I recovered pretty well from my first riding lesson. On day 1 I had sore muscles, but nothing too upsetting. On day 2, my muscles had settled down considerably, but my ME/CFS symptoms (sore throat, headache, etc) flared. But on day 3 I was back within normal parameters.
Today was my second lesson. There were good bits and bad bits.
Things started off well. I got onto the horse correctly and was led into the school. I was sitting much more comfortably, I was wearing different shoes and I think that helped my position. I remembered how to hold the reins, and I felt good and confident and totally ready to balance on top of Harvey as he went round and round the school.
Then I realised that, although the instructor (different instructor today) was going to be walking around with me, Harvey wasn't actually on a lead rein. I was supposed to be in charge of getting him to go and stop and turn.
In many ways this makes sense. A lot of how you're supposed to communicate with the horse about going and stopping and turning has to do with how you sit and conversely how you sit is going to be communicating with the horse. So it's a bit unfair and confusing and counter-productive for all concerned if the horse is being tugged left by the instructor when everything in the rider's body is saying Turn Right (and the newbie rider doesn't realise that's what she's doing). It's also about as safe as it could be - unlike cars, horses don't tend to crash into walls when you get something wrong.
However, all the sense in the world could not quell my rising sense of panic. I wanted to beg them to just let me get "sitting" nailed before I tried actual "riding". I was genuinely surprised when my pride and positivity managed to get in between my brain and my mouth, to morph the phrase "no! nooo! let me off! can't do it! don't wanna!" into "okay, absolutely, so what do I need to know?"
To my amazement, I did manage to persuade Harvey to start and stop and turn and change direction several times. But what we then experienced was a clash between my ability, and the principles of teaching.
Principles of teaching are to keep pushing the student to improve. Sit up straight - good! Now put your shoulders back - good! Now try and have your hands about the same width apart as his ears - good! But don't look at the horse, or at your hands, keep looking where you want to go - good! Let your hips move - good! Aim towards the H - use your outside leg - don't lean forwards...
My ability considered on a scale of 1-10 where 10 is my top performance, probably started at about a seven. I got on the horse, I warmed up a bit, my confidence grew, I got a few things right, and I was functioning at a ten! for ooh, maybe a minute and a half. The demands of the teacher increased. My brain was trying to handle more instructions. My body was getting tired. Gradually my ability dwindled to maybe a three. I was dizzy and not breathing well because I was holding my breath as I tried to follow all the instructions at once. We rounded another corner and I was trying so hard to remember which is my "outside leg" that my concentration on sitting up straight all but vanished, and whichever leg it was, the passable squeezes and kicks I was managing at the beginning of the lesson had turned into rather pathetic flops.
At this point Harvey quite reasonably decided that in the absence of a decent rider or a lead rein, he certainly wasn't going to be taking half-baked instructions from the weak and wobbly sack of jelly perched atop his saddle. His walk slowed to a meander and eventually stopped altogether. With the instructor, the supervisor, and the people who were there for the previous and next lessons all calling out words of encouragement, I got another few metres out of him, but by that point I was just burning with humiliation and wanted to not only slide off the horse, but continue right on into the ground.
Of course the ground doesn't work like that, and neither do horses. It's surprisingly difficult to fall off a large horse when you're sitting comfortably with a leg either side and he's standing still, and given a choice, I'd rather not cover my clothes in grubby sand/sawdust/whatever it is. My chair was still outside by the ramped mounting block and my walking stick was in my bag which was hanging on my chair, so I was sitting up there in front of the audience as I waited for someone to bring me one or the other and help me dismount.
I managed to get down more easily than last time, although I still needed help and was hardly elegant. As I joined the other students, a couple of them made sympathetic noises about how difficult it is when you're first learning... but this didn't help, as my tired and embarrassed brain, a hair's breadth away from bursting into tears with frustration and exhaustion, could only hear that people who'd watched my efforts had found me so utterly incompetent that they could only offer pity about just how awful I was. I paid and booked my next lesson as quickly as I could and then went and sat in the car park so that I wouldn't have to talk to anybody for the half-hour until my taxi arrived.
Of course after getting home and having a rest, a cup of tea, and a spot of lunch, I can acknowledge how ridiculous this was (I could sort of acknowledge it at the time but it didn't help). It's not the job of the other students to praise or encourage me, they were trying to be nice and I was behaving like a bit of a twit to run off and hide from the world. It was my second ever lesson, and I did about as well as anyone can be expected to on their second ever lesson. I can even - grudgingly - accept that I do have an illness with physical and cognitive components, and that my rapidly dwindling ability in the latter part of my lesson was to be expected and will probably happen again.
What would be useful is if any readers who've done/are doing horse riding could give me a clue how long I should persevere before I say "no, clearly I'm not cut out for this and should call it a day." When does it become fun rather than a confusing, exhausting struggle?
Showing posts with label CFS. Show all posts
Showing posts with label CFS. Show all posts
Wednesday, September 07, 2011
Tuesday, June 21, 2011
Wedding: the Aftermath
There are certain patterns with ME/CFS, and one of the major ones has to do with the relationship between activity and fatigue. I follow the classic pattern:
The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.
First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.
We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.
My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.
That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.
One month on and things that are done include:
We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.
I also need to do another blogpost or two about some of our vendors who really were exceptionally good.
- I do something active.
- I feel tired, often rather more tired than the activity warrants.
- I have a rest.
- I feel, not 100% better, but significantly improved.
- I carry on with my life.
- ... and then somewhere between 24 and 48 hours after the activity, a massive dose of absolute exhaustion coshes me over the head, all plans must be cancelled and I spend a lot of time in bed trying to recover.
The wedding was obviously an enormous active event. I had planned out a 72-hour food and medication schedule to give myself the best chance and this went amazingly well, but the fact remains that by Sunday morning, despite a full night's sleep, I had a major spoon deficit and the knowledge that it was about to get a lot worse.
First Breakfast was a slice of wedding cake (we'd asked for a couple of slices to be put in our room just in case we didn't get to eat much cake during the reception) and that gave me the kick start I needed to go and have a more traditional Second Breakfast of tea and toast with a few of the guests who had stayed at the hotel. The hotel staff helped us divvy up the leftover cake.
We'd hired an MPV to enable us to move lots of stuff around, but even so, Steve ended up having to go home on his own with the car full of gifts and our own equipment (like the TV and the Wii), empty it all out, and then come back to collect me, my chair, the dress, the suitcase and all the other bits and bobs remaining. By this point I was starting to struggle, but I was able to walk from the car to the house.
My husband (!) and I sat down to open our cards and gifts. We were completely overwhelmed - there were cards on every flat surface and still there were some we didn't have room for, all with the most lovely messages. We just about had the sense to log all the gifts against our guestlist so that we would have an easier time writing the thank-you notes.
That's about all I can really remember as at that point the extreme exhaustion kicked in. I know I did things, like visiting a friend who couldn't make it and eating obscene quantities of cake, but only on an academic level, I don't have any personal recollection of it. Apparently right up to Thursday I was telling people what a marvellous day I'd had "yesterday" at the wedding, and although I wrote a few posts online, they were all absolute surprises to me when I re-read them a few days later! Thankfully Steve had the full week off work, so we could really do everything at our own pace.
One month on and things that are done include:
- We've recovered back to "normal for us" levels of physical and mental energy, house-tidiness, eating and sleeping patterns, etc.
- We've installed our new Stuff in the appropriate places (mostly the kitchen), and taken the old Stuff and all the packaging to the recycling centre.
- I've mostly finished changing my name, although I still keep getting surprised by the odd little things that keep popping up with my old name and I still hesitate every time I introduce myself.
- We've paid off all of the bills, and given back everything that was hired or borrowed like the car and the cake stand, so there's a nice line drawn under it all - we don't owe anyone anything.
- We've had some of the photos back and have been able to print ourselves some copies to show people.
- We've given or posted all of the thank you notes.
We still need to take decent close-up photos of "stuff" like the dress, the flowers, the jewellery and so on... Steve's been promising to do this for a while so I think I'll just wait for the next dry sunny day and take some snaps of them in the garden with my point-and-shoot - everything looks good on a sunny, grassy background, right? We need to get digital copies of wedding photos from a few more guests, and then we can start putting together an album.
I also need to do another blogpost or two about some of our vendors who really were exceptionally good.
Monday, November 29, 2010
Doctors
I had to go and see my GP today. Nothing's wrong - it's just that every so often there will be a note on my repeat prescription asking me to make an appointment for a "medication review" and then I have to attend.
Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:
Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.
The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.
A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.
The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.
And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.
So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.
Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"
To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.
So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.
Since I got all the diagnostic tests and the medication-juggling and so on dealt with while I was still living in Lowestoft, by the GP who'd known me since childhood, the doctor who has been "my" GP for the three years I've been living here doesn't actually know me - so it made no difference that she's ill today and I ended up seeing a different doctor. Today's appointment was much the same as every other and pretty much went as follows:
Good morning, how are you?
Fine thanks, yourself?
Yes, fine, thank you. Please take a seat. So, what can we do for you today?
Well, I had a note on my repeat prescription telling me it was time for a review.
Ah, okay. *taps at computer* You're on X, Y, and Z, yes?
That's right.
Any problems with any of those?
Nope.
How are you generally?
Same as usual, nothing new to report.
Nothing you need to raise?
Nope.
*taps at computer some more* okay, that's done. Do you need me to do you another prescription today?
I don't mind, I've got a couple of weeks' worth at home still.
In that case shall we leave it and you can just pick up your repeat as usual when you need it?
Sounds good to me. Are we all done?
Yes, unless there was anything else?
Nope, all good. Thank you for your time.
The trouble is that, as a patient with an ME/CFS diagnosis, there are no other answers I'd dare give. I'm too scared of being labelled a malingerer. So I get defensive and clam up.
A plethora of medical blogs teaches me that patients like myself, with chronic illnesses that don't seem to get much better or much worse, are despised. "Heartsink patients" is apparently what we are called - we walk in the room and the doctor's heart sinks because he knows that all he can do is dole out the drugs, which is not the role he slogged through medical school to attain.
The heartsink patient presents vague symptoms that the doctor can do nothing about. They bother the doctor with pointless questions and ideas and they seem to have no idea about what sort of thing actually warrants bothering a GP and taking up his valuable time. The caricature is of a patient holding a sheaf of newspaper clippings and internet printouts about quack therapies, because it is wrong to be concerned about your health if you don't have a critical scientific background. You should leave that to the expert who sees you for eight minutes a year.
And then there's the whole ME/CFS physical/psychological debate. What is the difference between a headache that exists and a headache that the sufferer only thinks exists? Personally I'm not sure there is a difference. Both patients are experiencing pain. Speaking for myself, I underwent psychological assessment in the earliest phases of my illness and was considered to have all screws firmly affixed. But that's buried many years back in my notes. Many doctors still consider ME/CFS to be a manifestation of depression, or attention-seeking, or even painkiller-addiction, and nothing says 'mental health problems' like the statement "the shrink said I was sane!" so I keep my mouth shut and hope beyond hope that the doctor will take me at face value.
So thanks to the medical bloggers letting me know how they view me, I feel resented as a patient, and obliged to take up as little of the doctor's time as possible. I do not dare mention to any medical professional the links and patterns that I've noticed since my condition and medication settled, lest I be categorised as 'obsessed' with my health. I have a normal human desire for people to not think badly of me and that includes doctors.
Paradoxically, there are things I probably should be mentioning. I mean, earlier today when the doctor asked me - actually asked me - if there were any difficulties with my medications, that was probably the right time to mention that for the last eighteen months or so I've been feeling really quite queasy about thirty minutes after taking ibuprofen in the afternoon or evening (but weirdly not in the morning). But I don't know! If I say that, is it going to be a case of "right, we'd better try you on something different for a while," or is it going to be more "FFS, stop wasting my time and clogging up my surgery with your hypochondria!"
To be absolutely clear, this has nothing to do with any of the GPs I've ever seen at my local surgery. They have never been anything less than courteous, professional and efficient. It's the ones who dropped the professional veneer, albeit with anonymity, to come online and let the patients know just how contemptible we are.
So, GP bloggers, off we go. Complain about those bloody heartsink patients who don't know how to behave. Because frankly, I have no idea how to behave and if you could give me some constructive pointers I'd be grateful.
Thursday, May 06, 2010
Stop
Sitting in Steve's study this morning, sharing the first cuppa of the day, catching up on the overnight Twitter feed but discussing nothing more weighty than whether we had a good night's sleep.
A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.
Stop.
There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.
Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.
Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.
Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.
Life goes on.
One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.
A thought occurs to me, I raise my head and start with "Steve?" but before he can respond, a scythe of pain slices through me, somewhere behind my eyeballs. I can't see, the world spins, I want to lie down but I can't work out which direction that might be.
Stop.
There's ways and ways of saying Stop. Steve knows me well enough by now to understand what this one means. He doesn't ask questions, he doesn't move, he doesn't fuss, he just stops and waits. If we are lucky, I'm going to catch myself and slowly work back up to speed. If we're not lucky, he'd better be ready to catch me and make sure I don't knock the cups over.
Time passes, but we are a tableau, a freeze-frame, suspended animation. With an effort I breathe in, and then back out. A brightly-coloured wriggling skewer of pain dances in the cavern of my skull which suddenly seems to be much larger than any part of my body has a right to be. I breathe again and my outstretched hands identify the edge of the guest bed, which my upper body gratefully sinks onto. The duvet fills my eye sockets with calm, refreshing darkness, and the vicious little spears of pain begin to dissipate into a cloud which is bigger, but more muted and easier to cope with.
Slowly, the passage of time reasserts itself. Gently, Steve begins to move and both of us make a conscious effort to relax again.
Soon we start to giggle about the unfairness of him being effectively told to shut up before he's had a chance to say anything. The tea has not quite gone cold. I will have to be cautious today, avoid pushing my limits, but as long as I'm careful, I should have the spoons to manage everything essential.
Life goes on.
One of the 'essentials' today was to go and vote, with the help of my PA. I'm pleased to report that it was an accessible experience - we were able to park at the polling station, wheel in without difficulty, there was a wheelchair-height polling booth available, and I was politely advised that if I had difficulty reaching to post my paper into the ballot box, I could ask one of the officials to do it for me. I didn't - but the offer was appreciated.
Saturday, February 06, 2010
Definition of Relief
Regular readers will be aware that I've been waiting for the results of my DLA renewal. To recap, that's the disability benefit that is received regardless of work or income because it is supposed to help cover some of the essential disability-related additional expenses like equipment and transport.
I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.
So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...
I have an indefinite award, at the same level I've had for the last two years.
In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.
If I get better, then I must let them know and they will reduce the award.
If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).
If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.
But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.
I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.
If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.
I've been very anxious about this. Partly because of the circus that was my last renewal and partly because my existing award was due to expire at the end of this month, and I did not need my first few months of business to be dogged by personal financial struggles as well.
So this morning, when I heard the post land on the doormat, I wobbled out to the hallway, saw the unmistakable DWP Brown Envelope, reached for it, fell over, and was ripping it open almost before I'd hit the floor...
I have an indefinite award, at the same level I've had for the last two years.
In DWP-speak, indefinite is the word they use because the word permanent doesn't allow for people recovering, and the leaps and bounds of medical science can be unpredictable.
If I get better, then I must let them know and they will reduce the award.
If I get worse, then I must let them know and they might increase the award (or they might decrease it, because who knows where the political goalposts will be?).
If someone has too much time on their hands, they might decide to review my claim at any point just for squits and giggles. The government retain the right to put me under intense covert surveillance (google "Operation Ramesses" (sic)) and generally treat me like a criminal whenever they feel like it. That's par for the course of any kind of claim for assistance.
But it means they acknowledge that I've been in the same condition for long enough that I'm really not likely to change, and that there is little point putting me through the expensive bi-annual mill of renewals and medical assessments and appeals and suchlike. The level of assistance I receive can now be considered as permanent as my condition.
I'm shaking like a leaf. I've got the letter folded open here on my desk so I can keep looking at it to check I haven't mis-read.
If I was a more spiritual person than I am, I might believe this was some sort of reward for having finally taken the plunge yesterday and registered as self-employed. Which was going to be the topic of today's blogpost, but the DLA thing has kind of overwhelmed it.
Tuesday, January 19, 2010
DLA exam
This morning I had my medical examination for my DLA renewal.
A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.
The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.
I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.
And now I can stop worrying until the next letter turns up.
A big thank you to everyone who left such supportive and encouraging comments on my last post - it really helped me to stay calm about the whole thing.
The doctor arrived on time and stayed for just under an hour, which is good as the examination is supposed to take between 20 and 60 minutes. He came across as a pleasant and professional man. He was patient when I was struggling with things and gave the impression of listening to what I was saying. He took an awful lot of notes and appeared to be trying to understand, although of course he also made several efforts to catch me out. He did seem a little perplexed about why he was being asked to examine me for a renewal rather than a new claim.
I don't know if he believed a word I said and I have no idea what he wrote down. But on the whole I am happy with how the examination went. My PA was also present and she felt it had gone well - that I had presented openly and honestly and that I had made my difficulties clear without exaggerating.
And now I can stop worrying until the next letter turns up.
Tuesday, January 12, 2010
Medical Examination
So, Disability Living Allowance, also known as DLA and a great source of both help and stress. To recap, this is the money given to disabled people regardless of income or work status, to help meet some of the unavoidable extra costs associated with disability, from wheelchairs to incontinence pads to home delivery fees to Meals On Wheels. It's split into Care and Mobility components, awarded at different levels depending on the extent of difficulty you have with each of these aspects.
Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.
As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:
In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.
But they say that they "do not have enough information."
They want me to be examined by a doctor from ATOS healthcare next week.
I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.
He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.
But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.
I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."
Please?
Now, a quick timeline. I applied for DLA again in February 2008. I was turned down and asked for an appeal. This took until October 2008 to arrange. I won and a backdated award was made, for two years starting from February 2008 when I had first applied. So the award expires in February 2010.
As such, I got a renewal pack in October 2009 - they give you plenty of time so that you have a chance to access support from the Citizen's Advice Bureau or similar organisations. In November I sent off the completed renewal pack, including:
- Their 40-page form, completed with the basic and general answers.
- A typed 26-page document giving the more detailed answers they ask you to provide to their questions, including information about good and bad days, equipment I use and how I use it, support I receive and so on, because these answers just don't fit into answer-spaces the size of a credit card on the form.
- A copy of my current medication and equipment prescriptions.
- A copy of my Social Services care plan and contact details for my social worker, occupational therapist, GP, Access to Work adviser and everyone else associated with my disability needs.
- A statement from Steve as someone who lives with me.
- A statement from my PA as a person who is paid to look after me.
- A medical report from the ME/CFS specialist who formally assessed and diagnosed me.
In addition they will have written to my GP for her opinion, and she will have written back in support of my application, just like she did last time.
But they say that they "do not have enough information."
They want me to be examined by a doctor from ATOS healthcare next week.
I'm not entirely sure what that doctor is supposed to discover in his 20-60 minute session that has not already been provided in my own testimony and corroborated by several different types of person associated with my care. Especially considering that there are no easy or visible diagnostic criteria for ME/CFS. It's not like counting the limbs of someone who claimed on their form to have had two legs amputated and going "yep, looks like you are right after all". Variable and invisible conditions are a little more complicated.
He will be coming to my house, so I have a glimmer of hope that he just wants to check that I do have the assistive devices I claimed to use and that they're not covered in dust, that my to-do list doesn't include renewing my subscription to Hill Walker Weekly, and that I say "ow" often enough.
But even though I tell myself this... even though I know I successfully appealed once and can do it again if I have to... even though I know I have not lied on my forms... even though I know the doctor will get paid regardless of what he says about me... I've known a few too many people with a few too many horror stories about medical examinations for benefits purposes, up to and including doctors getting a claimant's condition wrong, writing down things they had not asked about and could not possibly have observed, bullying claimants into signing blank forms, and in one memorable instance, ticking the wrong gender box.
I think it's like when people are pregnant, and everyone comes forward with the stories of six weeks of labour, of a hundred stitches inside and out, of the midwife being busy and the cleaner having to do an emergency C-section using only a biro... and even though you know it probably won't happen to you, it preys on your mind. What I could do with right now, if anyone has the time, is a few comments saying "I had an ATOS medical examination, it wasn't a problem, the doctor was on time, he was nice, he listened to what I said before writing it down, let me take my time, and a few weeks later I was given an indefinite award at what I feel was the correct level."
Please?
Thursday, October 29, 2009
All Change
So, obviously the gods didn't feel like I had enough on my plate with the DLA/CAB stuff and the Social Services stuff and so on, because on Friday, I lost my main job. Sort of.
To start at the beginning... when I started that job, two years ago, the company was a small one and the job mostly consisted of sitting on a perch-stool at a workbench, selecting and scanning CDs, packaging them up with the right address/postage/customs stuff on them, and putting them on a shelf depending on which part of the world they were being sent to. The CDs I needed were mostly within reach of the workbench, but four or five times a day, an order would come up containing a CD that was on a shelf on the other side of the room. Excitement! Sometimes there would be some sort of special request or larger order to sort out, but mostly, that was it, until the end of the day when my colleague would put the packages we'd done into mail sacks, weigh them, and I'd put the information into the Royal Mail website ready for the postie to come and collect it all.
However, the company has grown, and with it, so have the demands of the dispatcher job. It's steadily increased over time. Now there are CDs in stock filling floor-to-ceiling shelves in two rooms, orders often weigh in excess of two kilos, and the loft space has been adapted to hold the supplies of flatpacked cardboard boxes that we now have to keep stocked. What has not increased is my ability to walk around or lift heavy things or climb ladders. If I was interviewing for the dispatcher job today, I would be having to apologise to the interviewers for having wasted their time as several aspects of the job are now beyond my capabilities.
On Friday afternoon, about halfway through my shift, I was called out of the packing room and into the boss's office. I was then asked to look for another job as the changed dispatch role was no longer suitable for me.
I was promised a fantastic reference but told that there were no roles available within the company that might be more suitable for me, and that it wasn't fair to the other dispatchers if I was doing all the less physically demanding parts of the job. I was thanked for all my hard work.
Head spinning with shock, I offered that I could learn to do just about anything, or I could ask an Access to Work Occupational Therapist to come in and see if any further adjustments could be made... but their minds were made up. Hard work, much appreciated, excellent worker, no complaints, glowing reference, not being given notice as such, but role no longer appropriate, please seek alternative employment soonest.
As an employer of a PA, I'm quite certain that for a conversation like that an employee is supposed to be advised in writing at least 48 hours beforehand and told they're allowed a representative with them. However it will surprise no one that instead of imperiously standing up and berating them for this laxity of procedure, I whimpered that I understood and asked if I could be excused to go and sit by myself for a few minutes to get my head around things.
But there's only so long you can spend sniffling in the Ladies loo and of course I can't independently leave the building - I need to wait for my taxi to turn up. So I went and packaged CDs for another hour and a half. What else could I do?
Options:
I could get signed off sick, as it is my poor health that means I cannot manage the changed job role. However, this means I would also have to stop doing my second job as well, and would screw up my lower-than-average sick-day record which would have an impact on my future employability. Also, just the thought of trying to deal with ESA makes me feel sick.
I could find another job, suitable for my abilities, with hours that suit me, that pays more than benefits rate and is prepared to take on a disabled person. In a recession, in a town where this week the paper reported there are six Jobseekers (ie healthy people on JSA) for every vacancy listed at the Jobcentre. Hahahahaha.
I could keep working until such time as they do actually outright fire me. However it is an understatement to say that since the "discussion" I have now lost the sense of loyalty and motivation that was making me put myself in more and more pain and swallow more and more drugs to try and keep up with my job.
So I took the initiative and on Tuesday, I resigned.
Dignity and self-respect more or less intact, a certain amount of annual leave to use up during my notice period, they don't have to try and accommodate me any more, and I don't have the unpleasantness of trying to work at a place I know wants me gone.
Once I finish my notice and have my P45, then I'll also technically resign my second job and set up as a self-employed person. I'll continue doing the second job, but instead of submitting a timesheet and having my employer do the PAYE thing, I'll invoice my employer for the hours worked and pay my own tax and NI. My earnings will be very low, but Steve has agreed to support me while I look for another "main" job so that I don't half-kill myself doing Christmas temping.
If anyone who reads this does the self-employed thing and can recommend a person or organisation that can do a bit of hand-holding when I do my first tax return, that would be appreciated.
To start at the beginning... when I started that job, two years ago, the company was a small one and the job mostly consisted of sitting on a perch-stool at a workbench, selecting and scanning CDs, packaging them up with the right address/postage/customs stuff on them, and putting them on a shelf depending on which part of the world they were being sent to. The CDs I needed were mostly within reach of the workbench, but four or five times a day, an order would come up containing a CD that was on a shelf on the other side of the room. Excitement! Sometimes there would be some sort of special request or larger order to sort out, but mostly, that was it, until the end of the day when my colleague would put the packages we'd done into mail sacks, weigh them, and I'd put the information into the Royal Mail website ready for the postie to come and collect it all.
However, the company has grown, and with it, so have the demands of the dispatcher job. It's steadily increased over time. Now there are CDs in stock filling floor-to-ceiling shelves in two rooms, orders often weigh in excess of two kilos, and the loft space has been adapted to hold the supplies of flatpacked cardboard boxes that we now have to keep stocked. What has not increased is my ability to walk around or lift heavy things or climb ladders. If I was interviewing for the dispatcher job today, I would be having to apologise to the interviewers for having wasted their time as several aspects of the job are now beyond my capabilities.
On Friday afternoon, about halfway through my shift, I was called out of the packing room and into the boss's office. I was then asked to look for another job as the changed dispatch role was no longer suitable for me.
I was promised a fantastic reference but told that there were no roles available within the company that might be more suitable for me, and that it wasn't fair to the other dispatchers if I was doing all the less physically demanding parts of the job. I was thanked for all my hard work.
Head spinning with shock, I offered that I could learn to do just about anything, or I could ask an Access to Work Occupational Therapist to come in and see if any further adjustments could be made... but their minds were made up. Hard work, much appreciated, excellent worker, no complaints, glowing reference, not being given notice as such, but role no longer appropriate, please seek alternative employment soonest.
As an employer of a PA, I'm quite certain that for a conversation like that an employee is supposed to be advised in writing at least 48 hours beforehand and told they're allowed a representative with them. However it will surprise no one that instead of imperiously standing up and berating them for this laxity of procedure, I whimpered that I understood and asked if I could be excused to go and sit by myself for a few minutes to get my head around things.
But there's only so long you can spend sniffling in the Ladies loo and of course I can't independently leave the building - I need to wait for my taxi to turn up. So I went and packaged CDs for another hour and a half. What else could I do?
Options:
I could get signed off sick, as it is my poor health that means I cannot manage the changed job role. However, this means I would also have to stop doing my second job as well, and would screw up my lower-than-average sick-day record which would have an impact on my future employability. Also, just the thought of trying to deal with ESA makes me feel sick.
I could find another job, suitable for my abilities, with hours that suit me, that pays more than benefits rate and is prepared to take on a disabled person. In a recession, in a town where this week the paper reported there are six Jobseekers (ie healthy people on JSA) for every vacancy listed at the Jobcentre. Hahahahaha.
I could keep working until such time as they do actually outright fire me. However it is an understatement to say that since the "discussion" I have now lost the sense of loyalty and motivation that was making me put myself in more and more pain and swallow more and more drugs to try and keep up with my job.
So I took the initiative and on Tuesday, I resigned.
Dignity and self-respect more or less intact, a certain amount of annual leave to use up during my notice period, they don't have to try and accommodate me any more, and I don't have the unpleasantness of trying to work at a place I know wants me gone.
Once I finish my notice and have my P45, then I'll also technically resign my second job and set up as a self-employed person. I'll continue doing the second job, but instead of submitting a timesheet and having my employer do the PAYE thing, I'll invoice my employer for the hours worked and pay my own tax and NI. My earnings will be very low, but Steve has agreed to support me while I look for another "main" job so that I don't half-kill myself doing Christmas temping.
If anyone who reads this does the self-employed thing and can recommend a person or organisation that can do a bit of hand-holding when I do my first tax return, that would be appreciated.
Wednesday, August 05, 2009
Wednesday
Wednesday is my day off, but today, it really doesn't feel like one.
What I'm about to say is going to sound really daft...
Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.
Anybody from Social Services reading this, I said almost, and I'm only referring to today...
You see, I have nothing to do.
Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.
The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.
I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.
I have enough library books to last several weeks, and there's nothing at all that I need to shop for.
As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.
Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.
But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.
So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.
All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.
What I'm about to say is going to sound really daft...
Today I have 3 hours of social activity with my PA and you know what? I almost wish I didn't.
Anybody from Social Services reading this, I said almost, and I'm only referring to today...
You see, I have nothing to do.
Steve and I seem to have some sort of bug or whatever and we're both feeling more run-down than usual. I had to go home early from work on Monday and went straight to bed and stayed there. With an effort, I managed work and knitting on Tuesday, but now I'm really shattered and all I want to do is just crawl back into bed and stay put. This removes all of the more physical activities I might engage in during my three hours of PA time like swimming or bowling.
The weather is miserable, so that removes the outdoorsy activities I enjoy like going for a wander-about in this or that park, maybe having a bit of a picnic somewhere pretty, very enjoyable things even when energy is low that just aren't fun when it's persisting it down.
I tried museums and art galleries but I guess I'm just not that sort of person. I do my best to find it interesting and make dutiful comments about how fascinating it is to find out about (insert museum speciality here) but seriously, I'm either falling asleep, or I'm getting a headache from trying to stoke up an interest and absorb tons of information about something that simply doesn't interest me. It's a bit different when I'm with Steve, because he can get excited about the engineering involved, or at the very least, find stuff to photograph in beautiful or unusual ways, and I can watch him.
I have enough library books to last several weeks, and there's nothing at all that I need to shop for.
As Steve isn't currently working, there aren't any out-and-about jobs that I should be taking care of, because he's tackling that sort of thing as it crops up. Which is great, and I am a million flavours of NOT complaining, but at least when I know I have to post a letter or buy a birthday card or something, it gives me the start of the roll of sticky tape.
Also as Steve isn't currently working, and as I've just splurged a month's worth of my own wages on this shiny new laptop (which I have been slowly getting used to since last night), it's not a good time to head to a shopping mall and spend money on things that I really don't need just for the sake of filling up some time.
But I have these three hours and although there's some flexibility, over the course of a month, my PA is supposed to do and get paid for a minimum of the regular approved number of hours.
So I'm sitting here, really not wanting to DO anything, yet trying to think of some sort of activity to occupy myself and my PA. I feel like I'm obliged to come up with some form of entertainment despite only wanting to sleep. I feel like it's a job.
All I've come up with so far is trying to find a nice cafe and sitting there drinking tea and eating cake and knitting or reading or something. But then I feel like I'm wasting the hours I've been allotted.
Wednesday, March 18, 2009
Good Start
Today was the first day with my new PA and I don't think it could have gone better.
She came round this morning, bang on time, which is always a good start. We spent a while going through the formal paperwork (and hooray for P at the Rowan for making sure I knew exactly what needed doing to each piece), and I also gave her the instructions for what to do in case of those little emergencies, so frequent in my life, that aren't 999 emergencies but involve me being too incapacitated to explain what's going on as the situation unfolds. I'd used an online translation tool to print up those instructions in both English and in her own first language, and she seemed a bit surprised by that, but in a good way. I was a bit concerned about whether it was the right approach - on the one hand, I wanted to be 100% sure she would know what to do in such a situation rather than have to translate as well as cope, on the other hand, I didn't want to seem patronising as her English is pretty good - but it seems to have gone okay.
After that, it was just a question of showing her how to take apart and reassemble the wheelchair and we were off and away into town. Nice and relaxed, we went into a few shops in the generally quite accessible central part of the town. She listened well to advice about how to best tackle certain obstacles (such as the trick of going backwards to get through a door with a lip), and in shops she was really good about browsing nearby without hovering over my shoulder or making me feel rushed.
The weather was gorgeous so we sat outside at the Olive Garden Café and I had some juice and a snack and enjoyed watching the world go by for a bit. Then we went to the park for a wander-around. Turns out this is something we have in common - we both love the sunshine.
I guess it sounds like a strange thing to get excited about. "It was my day off. The weather was nice. I went into town, looked in some shops, bought a couple of things, had something to eat, and then went to the park."
But the really exciting parts, you see, are things like:
Next week I think I might see about going swimming. I fear that part of me is going to run into trouble thinking of Things To Do, now that I have someone available to help me do them. Suggestions would be very, very welcome.
She came round this morning, bang on time, which is always a good start. We spent a while going through the formal paperwork (and hooray for P at the Rowan for making sure I knew exactly what needed doing to each piece), and I also gave her the instructions for what to do in case of those little emergencies, so frequent in my life, that aren't 999 emergencies but involve me being too incapacitated to explain what's going on as the situation unfolds. I'd used an online translation tool to print up those instructions in both English and in her own first language, and she seemed a bit surprised by that, but in a good way. I was a bit concerned about whether it was the right approach - on the one hand, I wanted to be 100% sure she would know what to do in such a situation rather than have to translate as well as cope, on the other hand, I didn't want to seem patronising as her English is pretty good - but it seems to have gone okay.
After that, it was just a question of showing her how to take apart and reassemble the wheelchair and we were off and away into town. Nice and relaxed, we went into a few shops in the generally quite accessible central part of the town. She listened well to advice about how to best tackle certain obstacles (such as the trick of going backwards to get through a door with a lip), and in shops she was really good about browsing nearby without hovering over my shoulder or making me feel rushed.
The weather was gorgeous so we sat outside at the Olive Garden Café and I had some juice and a snack and enjoyed watching the world go by for a bit. Then we went to the park for a wander-around. Turns out this is something we have in common - we both love the sunshine.
I guess it sounds like a strange thing to get excited about. "It was my day off. The weather was nice. I went into town, looked in some shops, bought a couple of things, had something to eat, and then went to the park."
But the really exciting parts, you see, are things like:
- I'm having a bit of trouble with my condition at the moment and usually that would prevent me from attempting to go out unless absolutely necessary, but today it didn't have to.
- Usually at the park I'm feeling grateful and indebted to whoever is pushing me and feel bashful about giving directions (especially when I want to go uphill), but today I didn't have to, I could go wherever I wanted and that was very empowering. Of course I've done that on the scooter, but,
- When I started to feel very unwell and crumpled up, I didn't have to try and find my way back to anywhere, or fend off any concerned passersby, or use up reserve spoons I don't have trying to cope, as someone was there to keep me safe and help me medicate and generally take charge of the situation.
- Once I'd got home and rested, I woke up feeling my version of "normal", rather than having arms and legs screaming from the effort and wondering why I did this to myself just for an amble about. I should still feel alright tomorrow - I haven't overexerted myself for the sake of a watch battery and a cheese and ham panini.
Next week I think I might see about going swimming. I fear that part of me is going to run into trouble thinking of Things To Do, now that I have someone available to help me do them. Suggestions would be very, very welcome.
Wednesday, December 31, 2008
2008 - A Roundup
I did this last year so I might as well do it this year too. Even though this time I haven't had any major life changes like moving house or getting a new job, it's worth bearing in mind that Steve and I started 2008 with a spirited attempt to blow ourselves up so the entirety of the last 12 months has been something of a bonus. It's also slightly disturbing that my first complete 12 months of post-getting-ill paid employment has been so centred around the benefits system.
January
In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.
February
February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.
I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.
March
I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.
"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."
My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...
April
While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.
Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.
May
As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:
"Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior."
I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.
My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.
June
I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.
The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.
Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.
July
Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.
August
I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.
I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.
September
With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.
October
I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.
After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.
Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.
November
I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.
"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."
I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.
Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.
December
Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.
The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.
I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.
And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!
January
In contrast to last year, my birthday was a bit of a non-event, consisting of me buying myself some cake to take into work, and Steve getting a card for me while I was out. Over the next few days things improved. Full of positivity about life, I started an attempt at some self-administered Graded Exercise Therapy which lasted all of about two days before Steve begged me to stop it and I felt cruddy enough to acquiesce. The extra pain, faints, weakness and cognitive difficulties from those days lasted almost two weeks.
February
February saw the Department of Work and Pensions Secretary Peter Hain leaving his position after a row over his failure to disclose donations for his failed attempt to become deputy leader of the Labour Party. His defence consisted basically of trying to prove that he was incompetent rather than a fraudster, a defence the DWP refuses to hear from its "customers" but apparently finds acceptable from its management. His replacement, James Purnell, started gleefully outlining "reforms" to the welfare system, based largely on a report from a City banker who had spent three whole weeks studying the system before spouting a lot of inaccurate data largely based on his own personal opinions. I got very upset about this as I was struggling with work and an overwhelming awareness that if I didn't cope, I would have to throw myself on the mercy of the "reformed" system.
I was also struggling with a Tax Credits cockup from several years ago, which makes it even more baffling why I decided to re-apply for Disability Living Allowance.
March
I got my forms finished, mostly by typing it up rather than trying to fit the ins and outs and variations of my day-to-day difficulties into the boxes.
"The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks."
My new GP confirmed that she would be supporting my DLA claim, and several people kindly wrote supporting statements about their direct experience of how my condition affects me. Just as I got the DLA bundle completed and sent off, the Tax Credits people started up again...
April
While the ball rolled on the Tax Credits and DLA issues, I wrote the most popular blogpost I have ever written... The Gorilla Theory. It gets linked to all over the place and people keep telling me how much it has helped them. I'm very proud of it.
Five months after I had alerted them to the issue, the DWP sent me an amusing letter about how they had paid me too much money when I started work (they forgot to stop putting my Incapacity Benefit into my bank account despite me asking nicely) and now they wanted it back. It was amusing because even though the error was entirely theirs, the letter implied that it was my fault and I'd actively claimed the money on purpose and threatened me with the full weight of THE LAW if I did not arrange to repay the money immediately.
May
As is becoming usual, May started with Blogging Against Disablism Day. The hot disability topic was still the welfare reforms but I opted to write some musings about equality and difference:
"Equal does not mean identical for the same reason that different does not mean inferior, or, for that matter, superior."
I started to think about my career direction (or lack thereof) and Steve scared the hell out of me by taking half a dose of paracetamol.
My DLA claim was turned down, but unlike 2007, this time I was ready to fight it to appeal.
June
I finally bit the bullet and admitted that 20 hours over 5 days packing CDs is too much for me, and asked for help from everyone I could think of. The agencies who are supposed to help were the least helpful of all. My boss and I agreed that I would work 17.5 hours over 4 days and have Wednesdays off as a sort of mini-weekend to recover from Monday and Tuesday, and prepare for Thursday and Friday. This has worked incredibly well for me and I haven't needed a sick-day since.
The Tax Credits Appeals and Complaints department reviewed my appeal bundle and agreed that I don't owe them any money. I could claim Tax Credits as a working disabled person and be something like £3k a year better off, but I don't dare.
Remploy offered me £50 to falsify information, and to make it even worse they wouldn't even tell me what that information was - just sent me signature pages of forms.
July
Steve finished his exams and started work again and our financial position eased up almost instantly. He could have claimed benefit when our savings ran out, but having spent a couple of years watching in horrified amazement the merry dances that people like Pip, Bendy Girl and I have to perform not just before and during our genuine and necessary claims, but for months and years afterwards, he decided not unreasonably that he'd have to be starving first.
August
I didn't blog at all in August. There was a lot going on and I didn't have the brain-time to write any of it up. Steve and I went out and about a little bit more with our new-found income, but we also had to adjust to the new balancing act of my care needs and the effects of my job vs him being at work all day and no longer having all the time in the world for looking after me and keeping the household running. Social Services assessed me for help and I was approved for Direct Payments for care, as well as an emergency backup care plan.
I applied and was interviewed for a part-time admin job - didn't get it, but there was lots of positive feedback and it was a good confidence boost. We also went to Jiva and Munkt0n's wedding which was quite possibly the loveliest wedding I have ever attended.
September
With my DLA appeal drawing closer I found myself unable to concentrate properly on anything. Christmas orders started coming in at work and keeping on top of things, while do-able, was taking everything I had.
October
I won my DLA Appeal. It was backdated to the application date in February which meant I was suddenly owed a lump sum in excess of £2,000. I am proud of having introduced the Appeals panel to Spoon Theory.
After some prodding, I also got an official response about the Remploy problems from back in June. It was as pathetic as I have come to expect.
Then it was off to Lowestoft for a week's holiday with Pip and The Boy. This would have been a great idea, and I felt extremely well-rested, except for the bit where I came home to discover that I had to fit in a whole lot of extra housework because while I'd been away Steve had been having one of those weeks.
November
I finally got to go into town to open a bank account in order to receive Direct Payments, to pay for the care Social Services assessed me as needing.
"The whole thing is a bit chicken and egg, really - to get Direct Payments, I have to go into town and set up a bank account, but that's a major excursion for me, so really, I need Direct Payments to pay a PA to go into town with me to set up a bank account so I can get Direct Payments to pay a PA..."
I had another job interview which didn't go so well as it turned out to be for a full-time job, and much as I would like to, there is no way I can do full-time work.
Then my laptop died with a virus of great horribleness. Never before had I picked up a computer virus which my antivirus program couldn't swiftly and efficiently dispatch. We ended up with no real option but a complete fresh reinstall of Windows and then very carefully scanning and replacing files from backups. I know I'm an addict, but I didn't realise it would upset me as much as it did. I will be more careful.
December
Steve and I underwent the ultimate test of the strength of a relationship - we went to IKEA. We survived.
The Welfare Reforms mooted in February came to the fore yet again. The banker's report is being treated as rock-solid fact, and the BBC is somehow combining stories of mass redundancies with the stereotypical image of benefit claimants as scroungers who cannot be bothered. It scares me.
I got my Christmas Tree and decorated it, and with a stack of assorted presents underneath it was the centrepiece of a wonderful Christmas.
And now, I understand from my charming assistant that the fireworks have been purchased and the weather tonight looks to be cold but clear. Hopefully, see you on the other side - Happy New Year!
Wednesday, October 08, 2008
DLA Appeal
Appeal was today. It went well.
It was a bit daunting, but the panel made an effort to put me at my ease, asked sensible questions, and paid attention to my answers. I was able to answer all of the questions that were put to me, clearly and consistently. I also introduced the panel to Spoon Theory.
I got awarded High Rate Mobility and Low Rate Care, which is about right. We had thought I might get Middle Rate Care, but frankly I'm not going to argue about it. The award is backdated to February 2008 (which was when I applied) and is for two years from that date, until February 2010.
Absolutely knackered now.
It was a bit daunting, but the panel made an effort to put me at my ease, asked sensible questions, and paid attention to my answers. I was able to answer all of the questions that were put to me, clearly and consistently. I also introduced the panel to Spoon Theory.
I got awarded High Rate Mobility and Low Rate Care, which is about right. We had thought I might get Middle Rate Care, but frankly I'm not going to argue about it. The award is backdated to February 2008 (which was when I applied) and is for two years from that date, until February 2010.
Absolutely knackered now.
Friday, October 03, 2008
The Wibble
My Disability Living Allowance (DLA) appeal is next week.
In an organisational sense, I'm well prepared for it. Steve has managed to get a day off work in order to take me to and from the building where the appeal is being held. A person from the local Welfare Rights Advice Service is going to be there to represent me. The evidence I submitted is pretty substantial. I've reserved an accessible parking space at the venue, I've even decided roughly what I'm going to wear.
In a more personal sense, I'm not doing so badly either. I mean, I know my claim is genuine. I know that everything I have said on my forms is accurate. The absolute worst possible case scenario is that they turn me down and I have to continue living on exactly the same amount of money I am living on at the moment. Okay, it's not ideal, as it means I'm dependent on Steve's goodwill to continue to make up the shortfall between my wages and "survival" due to my disability-related expenses (which is what DLA is meant to cover and is why it is not means-tested), but at least I'm not currently likely to end up in a situation where I can't afford to eat because of benefit difficulties. This DLA appeal is not the end of the world.
But then there's the wibble. You know. The bit in each and every one of us that nags away at confidence, that says your date will be put off by that horrendous spot on your nose, or that reminds you in the night of that stupid thing you said at the interview...
The wibble, for me, is bypassing everything I academically know and understand about models of disability, everything I believe about how I am a useful member of society, doing a job, paying tax, helping and supporting my friends and loved ones and generally being just fine as a person. To prepare for the appeal I have to spend a lot of time concentrating on all the things I can't do, and this feeds the wibble.
The Wibble says to me,
"You're useless, you can't even walk around the block or work full-time or manage this or that or the other on your own.
If you win, well done! You've proved that you're useless! What a thing to prove! Wow, I bet you're proud.
But if you lose, you're still useless, in fact you're so useless, you've failed to prove you're useless! And you're going to have to carry on struggling without financial support to cover the additional expenses caused by your inability to do things..."
Yeah, I know, emo crap, call the waaaahmbulance, etc. I'm just stressed out to hell and can't wait for this to just be over, one way or the other.
In an organisational sense, I'm well prepared for it. Steve has managed to get a day off work in order to take me to and from the building where the appeal is being held. A person from the local Welfare Rights Advice Service is going to be there to represent me. The evidence I submitted is pretty substantial. I've reserved an accessible parking space at the venue, I've even decided roughly what I'm going to wear.
In a more personal sense, I'm not doing so badly either. I mean, I know my claim is genuine. I know that everything I have said on my forms is accurate. The absolute worst possible case scenario is that they turn me down and I have to continue living on exactly the same amount of money I am living on at the moment. Okay, it's not ideal, as it means I'm dependent on Steve's goodwill to continue to make up the shortfall between my wages and "survival" due to my disability-related expenses (which is what DLA is meant to cover and is why it is not means-tested), but at least I'm not currently likely to end up in a situation where I can't afford to eat because of benefit difficulties. This DLA appeal is not the end of the world.
But then there's the wibble. You know. The bit in each and every one of us that nags away at confidence, that says your date will be put off by that horrendous spot on your nose, or that reminds you in the night of that stupid thing you said at the interview...
The wibble, for me, is bypassing everything I academically know and understand about models of disability, everything I believe about how I am a useful member of society, doing a job, paying tax, helping and supporting my friends and loved ones and generally being just fine as a person. To prepare for the appeal I have to spend a lot of time concentrating on all the things I can't do, and this feeds the wibble.
The Wibble says to me,
"You're useless, you can't even walk around the block or work full-time or manage this or that or the other on your own.
If you win, well done! You've proved that you're useless! What a thing to prove! Wow, I bet you're proud.
But if you lose, you're still useless, in fact you're so useless, you've failed to prove you're useless! And you're going to have to carry on struggling without financial support to cover the additional expenses caused by your inability to do things..."
Yeah, I know, emo crap, call the waaaahmbulance, etc. I'm just stressed out to hell and can't wait for this to just be over, one way or the other.
Wednesday, March 26, 2008
Ahead of schedule
The DLA claim is now complete. All pages have my name and NI number on, all signatures are in place, all documents are attached.
Steve and I got the bulk of the photocopying done on Tuesday morning. That was sort of fun. Obvously the Big Document, we had simply printed off two copies. But the supporting documents, like other people's statements and my repeat prescription and whatnot, needed actual photocopying, plus of course several pages of the form itself such as the front page, the signature and the sucklike. Anyway, we sauntered into the local library and asked the nice lady at the desk if we could do photocopying. She looked across at the photocopier (obviously a complicated piece of equipment requiring years of training) and answered "well, I can do photocopying for you."
I cannot describe how very intensely satisfying it was to cheerfully say "okay then!" and whump about 25 miscellaneous pieces of paper and a big, thick form onto her desk, none of which could be put into the autofeeder on the machine.
Then Steve and I sat down on some really quite comfortable chairs (the library's just had a bit of a re-fit) and quietly flicked through some magazines for half an hour, listening to the singing of the toddler's group which was taking place in a side room, while she got on with copying each. page. individually.
This was much easier than I had envisaged.
Today, I got the physical signed copy of the last of the statements from my friends. Steve and I don't have a photocopier, but we do have a scanner and a printer, so rather than another trip to the library we took care of that one at home.
I now have two large checked and double-checked piles of paperwork, one for them and one for me.
The pile of paperwork being sent to the DWP is over a centimetre thick. This will not fit into the standard A4 size envelope provided by the DWP for the return of the form. Also, the envelope provided is a Freepost one, and I don't want to send my precious documentation via Freepost. I want it guaranteed next-day delivery, recorded, tracked, traced and signed for. I'm wondering whether my best course of action is to (a) ask the people at the Post Office, or (b) call the Benefit Enquiry Line and ask them.
I'm so glad this is over. I will send it tomorrow and then I won't have to think about it at all until they contact me with their answer, which could well be several months.
A big, big, enormous thank you to everyone who has helped me - everyone who's written a statement, or helped with phrasing of things, or signposted me to useful resources, or listened to me sounding off when I got overstressed, or left a supportive blog comment. I could not have got this done without your help and support.
I do find myself at a bit of a loss, though. I'm sat here with the laptop and this overwhelming feeling that I'm supposed to be working on my Additional Information, like I have done with most of my spare time for the last few weeks. I'm not really sure what I'm meant to do instead. Suggestions for blog topics welcome.
Steve and I got the bulk of the photocopying done on Tuesday morning. That was sort of fun. Obvously the Big Document, we had simply printed off two copies. But the supporting documents, like other people's statements and my repeat prescription and whatnot, needed actual photocopying, plus of course several pages of the form itself such as the front page, the signature and the sucklike. Anyway, we sauntered into the local library and asked the nice lady at the desk if we could do photocopying. She looked across at the photocopier (obviously a complicated piece of equipment requiring years of training) and answered "well, I can do photocopying for you."
I cannot describe how very intensely satisfying it was to cheerfully say "okay then!" and whump about 25 miscellaneous pieces of paper and a big, thick form onto her desk, none of which could be put into the autofeeder on the machine.
Then Steve and I sat down on some really quite comfortable chairs (the library's just had a bit of a re-fit) and quietly flicked through some magazines for half an hour, listening to the singing of the toddler's group which was taking place in a side room, while she got on with copying each. page. individually.
This was much easier than I had envisaged.
Today, I got the physical signed copy of the last of the statements from my friends. Steve and I don't have a photocopier, but we do have a scanner and a printer, so rather than another trip to the library we took care of that one at home.
I now have two large checked and double-checked piles of paperwork, one for them and one for me.
The pile of paperwork being sent to the DWP is over a centimetre thick. This will not fit into the standard A4 size envelope provided by the DWP for the return of the form. Also, the envelope provided is a Freepost one, and I don't want to send my precious documentation via Freepost. I want it guaranteed next-day delivery, recorded, tracked, traced and signed for. I'm wondering whether my best course of action is to (a) ask the people at the Post Office, or (b) call the Benefit Enquiry Line and ask them.
I'm so glad this is over. I will send it tomorrow and then I won't have to think about it at all until they contact me with their answer, which could well be several months.
A big, big, enormous thank you to everyone who has helped me - everyone who's written a statement, or helped with phrasing of things, or signposted me to useful resources, or listened to me sounding off when I got overstressed, or left a supportive blog comment. I could not have got this done without your help and support.
I do find myself at a bit of a loss, though. I'm sat here with the laptop and this overwhelming feeling that I'm supposed to be working on my Additional Information, like I have done with most of my spare time for the last few weeks. I'm not really sure what I'm meant to do instead. Suggestions for blog topics welcome.
Monday, March 24, 2008
Egads
First, some good knitting news: Following on from last week's trauma, I have now knitted and measured (and measured, and measured, and got Steve to measure too) the 14 inches of jumper and have made a start on the armhole decreases. There's still a way to go, but at least I know it'll be right.
Also, some Pip and Littlun news: They built a snowman at the park with some other dads and kids from their street. I saw the pics. The Boy is still cute. He starts at the nursery class at the local school next week, just mornings and no uniform for now, although there's still a sense of "no! how can he be going to the school! he's a baby!". Fingers crossed for them, although I'm sure they'll be fine.
And, the form. Oh boy, the form.
Since the tick boxes on the new DLA form are a bit 'one size fits no one'; and since the 'Additional Information' boxes are tiny; and since even if they were bigger, I don't do so well with the handwriting (that comes under question 47, 'Communication', if you're interested); and since Steve's handwriting is terrible; we just typed all my answers into a big document to print out and attach. The idea was that in and across the little boxes, we could simply write "see Additional Information, page X" making things easier all round.
Today, I printed out the document of 'Additional Information' so that I could start writing the correct page references into the little boxes on the form.
The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks.
Two of them are me covering my back with things like a list of the supporting evidence I am sending with the form, and an extra reiteration of the Declaration ("I declare that the information I have given is correct blah blah") just in case. The remaining 46 are all providing as clear a picture as I can of what problems I have and what help I need.
It defies stapling. We ended up with Steve hole-punching them all a few pages at a time, and me tying them together with spare yarn. It is a measure of how far I have progressed in the last year, that instead of just thinking "I'll grab whatever bit of wool is handy," I gave serious thought to the issue. I didn't want anything that would break, anything fluffy or fuzzy, or anything pink. After a moment's consideration, I instructed Steve to go downstairs to my Stash and fetch the pale blue Rowan All Seasons cotton. It is a measure of how far Steve has progressed, that he came back with not only the All Seasons cotton, but also the green Rowan Handknit Cotton as well, in case I'd prefer that, which I did. It's worked well, although we decided against listing it as a project on Ravelry.
In addition to this monster statement, and the standard DLA additional paperwork such as a list of repeat prescriptions and a report from a specialist, I am lucky enough to also be able to provide statements from:
- my mother
- my boyfriend, who I live with
- my co-worker who works with me for four hours a day
- two of my oldest friends. Uh, that's oldest as in, known me for years, not that they're old, I mean, uh...
I did ask my mum about the idea of providing a statement from the family dog too ("when Mary is on the floor, I lick her hand until she gives me a fuss, upon which I am satisfied that all is well and stand guard over her, in silence. They told me about some pup called Lassie who would have jumped about all over the place fetching people and barking, but I figured, no, some peace and quiet is what she'll want, that and an unpleasantly moist hand...") but she felt this might be over-egging the pudding somewhat.
Anyway, tomorrow I'll finish writing the Additional Information page references onto the form itself, and once that's done, I can sign and date it. Then on Wednesday, I need to find somewhere that does photocopying, because we Do Not send things to the DWP without keeping a copy, which means that hopefully I can get it posted (registered recorded whoopdedoo) by Friday, neatly inside the deadline. And I can stop fretting about it.
Also, some Pip and Littlun news: They built a snowman at the park with some other dads and kids from their street. I saw the pics. The Boy is still cute. He starts at the nursery class at the local school next week, just mornings and no uniform for now, although there's still a sense of "no! how can he be going to the school! he's a baby!". Fingers crossed for them, although I'm sure they'll be fine.
And, the form. Oh boy, the form.
Since the tick boxes on the new DLA form are a bit 'one size fits no one'; and since the 'Additional Information' boxes are tiny; and since even if they were bigger, I don't do so well with the handwriting (that comes under question 47, 'Communication', if you're interested); and since Steve's handwriting is terrible; we just typed all my answers into a big document to print out and attach. The idea was that in and across the little boxes, we could simply write "see Additional Information, page X" making things easier all round.
Today, I printed out the document of 'Additional Information' so that I could start writing the correct page references into the little boxes on the form.
The total was 48, yes, forty-eight pages. The word-count was 26,019. That's twenty-six thousand and nineteen words. That's more than the entirety of my GCSE English Language and Literature courseworks.
Two of them are me covering my back with things like a list of the supporting evidence I am sending with the form, and an extra reiteration of the Declaration ("I declare that the information I have given is correct blah blah") just in case. The remaining 46 are all providing as clear a picture as I can of what problems I have and what help I need.
It defies stapling. We ended up with Steve hole-punching them all a few pages at a time, and me tying them together with spare yarn. It is a measure of how far I have progressed in the last year, that instead of just thinking "I'll grab whatever bit of wool is handy," I gave serious thought to the issue. I didn't want anything that would break, anything fluffy or fuzzy, or anything pink. After a moment's consideration, I instructed Steve to go downstairs to my Stash and fetch the pale blue Rowan All Seasons cotton. It is a measure of how far Steve has progressed, that he came back with not only the All Seasons cotton, but also the green Rowan Handknit Cotton as well, in case I'd prefer that, which I did. It's worked well, although we decided against listing it as a project on Ravelry.
In addition to this monster statement, and the standard DLA additional paperwork such as a list of repeat prescriptions and a report from a specialist, I am lucky enough to also be able to provide statements from:
- my mother
- my boyfriend, who I live with
- my co-worker who works with me for four hours a day
- two of my oldest friends. Uh, that's oldest as in, known me for years, not that they're old, I mean, uh...
I did ask my mum about the idea of providing a statement from the family dog too ("when Mary is on the floor, I lick her hand until she gives me a fuss, upon which I am satisfied that all is well and stand guard over her, in silence. They told me about some pup called Lassie who would have jumped about all over the place fetching people and barking, but I figured, no, some peace and quiet is what she'll want, that and an unpleasantly moist hand...") but she felt this might be over-egging the pudding somewhat.
Anyway, tomorrow I'll finish writing the Additional Information page references onto the form itself, and once that's done, I can sign and date it. Then on Wednesday, I need to find somewhere that does photocopying, because we Do Not send things to the DWP without keeping a copy, which means that hopefully I can get it posted (registered recorded whoopdedoo) by Friday, neatly inside the deadline. And I can stop fretting about it.
Thursday, March 20, 2008
Things are picking up again
A couple of nights ago I realised that I have now been knitting for a whole year.
While this is something I'm actually quite happy about, it did put the cherry on the top when I did some measurements on the jumper I am working on last night and realised: I Have Made A Mistake.
To make matters worse, the Mistake was some five or six inches back. I can pinpoint the mistake - I made it on the 8th of March, because it was the day before Simon and Tony ran a half-marathon dressed as a camel. So that's almost two weeks' knitting. The Mistake I made was that I mis-measured the length from the cast-on to the armhole decrease. It's meant to be 14 inches. The back piece, already completed, has a perfect 14 inches. The front piece, for some reason, has a perfect 13 inches. I suspect that I looked at the tape measure with my brainfog on and misread the number or got the alignment wrong. It's not a huge difference but it's enough to show.
With a heavy heart and a lot of swearing, I started to frog. This was made complicated because with the Colinette Cadenza yarn I'm using, you're supposed to use two balls at once to avoid pooling. You do a knit and a purl row of Ball A, then a knit and a purl row of Ball B, then a knit and a purl row of Ball A again. Result: huge tangle of wiggly wool.
Steve was bright enough to realise that this was NOT the moment to go "hang on, I'll get my camera" but to offer support and assistance.
Once I'd ripped back far enough, I started to painstakingly pick up 120 stitches from the remaining knitting. I'd picked up about 115 of them before realising that because of the yarn-changeovers, the 5 at the end had unravelled themselves two rows back.
Further cursing as attempted to remember how to put in a safety line. I got some bright orange acrylic and started to stitch it in, four or five rows back. I got Steve to count my stitches while I did some stretching. Then it was back on the floor for more frogging, and a big sigh of relief when the line held.
While I began to thread the stitches on the orange line onto my circular needle, Steve wound his first centre-pull ball of yarn. It was great, except that as soon as I started to knit, we discovered respective cockups: I had threaded all 120 stitches onto my needle in the right order, but twisted the wrong way round, and Steve had wound the ball of yarn so tightly it wouldn't actually pull from the centre.
Still, by this point, we had a great sense of having got past the worst of it. I started to knit again, carefully turning each stitch around before knitting it, and Steve unwound his yarn and began to wind again, a little looser this time. He was so satisfied, that he checked his colour balancing before getting camera-happy at it, with the result that this picture is not only a nice picture of his second attempt, it's also pretty much exactly true colour.
I feel a bit funny about having wasted an evening - I should have been working on my form, he should have been studying - but there was something very nice about working together to get it sorted out. Plus, I now have a boyfriend who can wind centre-pulls, and that is a serious asset.
As far as the form goes, well, I just need to write about my night-time care needs, the precis of which is "I'm pretty much sorted if I'm safe and sound in bed, however, if I need to get out of bed, I need the same help as I would in the day, with additional consideration for me being even more badly co-ordinated because I'm sleepy because, you know, it's the middle of the damn night." I'm continuing with my approach of typing all the information into a document and then, on the form, just writing in which page of the document they should refer to. There are currently about 37 pages, covering about 30 major questions.
Oh, it's also worth saying, I saw the new GP, Dr H, about a week ago. I told her I was applying for DLA and about what happened last time. She told me there were in fact notes in my records about what happened last time, so I guess Dr W must have typed up a bit extra the last time I saw her before sending my notes here. Dr H confirmed a few bits and bobs from the screen ("yes, we've got stuff here about how you have trouble walking, can't walk without pain, about faints and dizzy spells, all that sort of thing") and then, the confirmation I really needed to hear:
"Yes, for the bit that asks about your GP, just put my name and the address of this surgery, they'll send us a form, and we will back you up. We will support your claim.".
Phew.
While this is something I'm actually quite happy about, it did put the cherry on the top when I did some measurements on the jumper I am working on last night and realised: I Have Made A Mistake.
To make matters worse, the Mistake was some five or six inches back. I can pinpoint the mistake - I made it on the 8th of March, because it was the day before Simon and Tony ran a half-marathon dressed as a camel. So that's almost two weeks' knitting. The Mistake I made was that I mis-measured the length from the cast-on to the armhole decrease. It's meant to be 14 inches. The back piece, already completed, has a perfect 14 inches. The front piece, for some reason, has a perfect 13 inches. I suspect that I looked at the tape measure with my brainfog on and misread the number or got the alignment wrong. It's not a huge difference but it's enough to show.
With a heavy heart and a lot of swearing, I started to frog. This was made complicated because with the Colinette Cadenza yarn I'm using, you're supposed to use two balls at once to avoid pooling. You do a knit and a purl row of Ball A, then a knit and a purl row of Ball B, then a knit and a purl row of Ball A again. Result: huge tangle of wiggly wool.
Steve was bright enough to realise that this was NOT the moment to go "hang on, I'll get my camera" but to offer support and assistance.
Once I'd ripped back far enough, I started to painstakingly pick up 120 stitches from the remaining knitting. I'd picked up about 115 of them before realising that because of the yarn-changeovers, the 5 at the end had unravelled themselves two rows back.
Further cursing as attempted to remember how to put in a safety line. I got some bright orange acrylic and started to stitch it in, four or five rows back. I got Steve to count my stitches while I did some stretching. Then it was back on the floor for more frogging, and a big sigh of relief when the line held.
While I began to thread the stitches on the orange line onto my circular needle, Steve wound his first centre-pull ball of yarn. It was great, except that as soon as I started to knit, we discovered respective cockups: I had threaded all 120 stitches onto my needle in the right order, but twisted the wrong way round, and Steve had wound the ball of yarn so tightly it wouldn't actually pull from the centre.
Still, by this point, we had a great sense of having got past the worst of it. I started to knit again, carefully turning each stitch around before knitting it, and Steve unwound his yarn and began to wind again, a little looser this time. He was so satisfied, that he checked his colour balancing before getting camera-happy at it, with the result that this picture is not only a nice picture of his second attempt, it's also pretty much exactly true colour.
I feel a bit funny about having wasted an evening - I should have been working on my form, he should have been studying - but there was something very nice about working together to get it sorted out. Plus, I now have a boyfriend who can wind centre-pulls, and that is a serious asset.
As far as the form goes, well, I just need to write about my night-time care needs, the precis of which is "I'm pretty much sorted if I'm safe and sound in bed, however, if I need to get out of bed, I need the same help as I would in the day, with additional consideration for me being even more badly co-ordinated because I'm sleepy because, you know, it's the middle of the damn night." I'm continuing with my approach of typing all the information into a document and then, on the form, just writing in which page of the document they should refer to. There are currently about 37 pages, covering about 30 major questions.
Oh, it's also worth saying, I saw the new GP, Dr H, about a week ago. I told her I was applying for DLA and about what happened last time. She told me there were in fact notes in my records about what happened last time, so I guess Dr W must have typed up a bit extra the last time I saw her before sending my notes here. Dr H confirmed a few bits and bobs from the screen ("yes, we've got stuff here about how you have trouble walking, can't walk without pain, about faints and dizzy spells, all that sort of thing") and then, the confirmation I really needed to hear:
"Yes, for the bit that asks about your GP, just put my name and the address of this surgery, they'll send us a form, and we will back you up. We will support your claim.".
Phew.
Wednesday, February 27, 2008
Witty Title Goes Here
So, I've been being very organised about this whole DLA business. I phoned the Benefit Enquiry Line to get a form sent to me that would be date-stamped so that my claim, if successful, would be backdated. I scoured the members area of Benefits and Work and saved a copy of the guidelines to filling in the adult DLA form on physical health grounds. I went through that document and made a Notepad file with my notes based on what would be most relevant for me. Next, I downloaded a copy of the new form (it's different to the forms I filled in before. There's only one of it and it's a lot more reminiscent of the IB50). Then I started slowly working on one question at a time, typing my answers into another notepad file.
A number of people who know me in real life were lovely enough to say they would write statements for me, detailing their experiences of my care and mobility needs, if I told them what was needed. So I whipped up yet another notepad file, this one being a rough guide to the sort of information the DLA people are looking for.
Today, the actual forms arrived. There are 63 questions. Unfortunately that's not a useful number. "Date of birth" is one question. "National Insurance number" is one question. However, on the other side of the coin, "Would you have difficulty preparing and cooking a main meal for yourself? Is there anything you want to tell us about the difficulty you would have planning, preparing and cooking a main meal?" is all one question.
Having got to a point in my notepad file-o-answers where I was feeling really useless and like I wanted to throw my laptop across the room (question 32, if anyone's keeping track), I decided to start working on the form. After all, my notepad files are a bit pointless if the actual form remains blank.
And, ladies and gentlemen, I have made my first mistake. Question 6. "Address where you live", I got my postcode wrong.
I am wondering whether to make a note of this in the Additional Information.
A number of people who know me in real life were lovely enough to say they would write statements for me, detailing their experiences of my care and mobility needs, if I told them what was needed. So I whipped up yet another notepad file, this one being a rough guide to the sort of information the DLA people are looking for.
Today, the actual forms arrived. There are 63 questions. Unfortunately that's not a useful number. "Date of birth" is one question. "National Insurance number" is one question. However, on the other side of the coin, "Would you have difficulty preparing and cooking a main meal for yourself? Is there anything you want to tell us about the difficulty you would have planning, preparing and cooking a main meal?" is all one question.
Having got to a point in my notepad file-o-answers where I was feeling really useless and like I wanted to throw my laptop across the room (question 32, if anyone's keeping track), I decided to start working on the form. After all, my notepad files are a bit pointless if the actual form remains blank.
And, ladies and gentlemen, I have made my first mistake. Question 6. "Address where you live", I got my postcode wrong.
I am wondering whether to make a note of this in the Additional Information.
Thursday, February 21, 2008
Giving in
I'm going to attempt to claim DLA again. Yes, I know. Don't ask.
I've been going through the members' resources at Benefits and Work and it looks like where I'm really going to fall down is that I have not maintained a raft of professionals to back me up.
My condition cannot be 'cured', the best the medical profession can do for me is help me to control my symptoms.
The first year of my illness, I had any amount of assessments and tests, physical, neurological, psychiatric, you name it, and I was tried on all sorts of different medications and treatments (within the constraints of NHS provision) until we found the optimum combination for controlling my symptoms - not perfect by a long way, but the best we could do.
After which, my medical treatment pretty much dwindled to a repeat prescription every month, and the occasional GP appointment if something acute happened. There was no point remaining on the books for the Pain Clinic or the neurologist or the butcher, baker or candle-stick maker, knackering myself out by hiking off to appointments at hospitals ten or twenty miles away. They had nothing further to offer me.
Wrong. There was a point. They could have provided extra confirmation about my condition and my limitations to the DWP. As it is, the DWP have a computer, and if the computer sees that I am only treated by my GP, and that I've only had a few appointments with my GP in the last 12 months... then it will calculate that there isn't much wrong with me and send me on my way. There are no prizes for attempting to "not be a burden on the NHS" and so on. That's not playing the game properly, it seems.
I have to try and convince the humans that the computers have it wrong on this one.
I'm going to be working on this for a while, blogging might become minimised.
I've been going through the members' resources at Benefits and Work and it looks like where I'm really going to fall down is that I have not maintained a raft of professionals to back me up.
My condition cannot be 'cured', the best the medical profession can do for me is help me to control my symptoms.
The first year of my illness, I had any amount of assessments and tests, physical, neurological, psychiatric, you name it, and I was tried on all sorts of different medications and treatments (within the constraints of NHS provision) until we found the optimum combination for controlling my symptoms - not perfect by a long way, but the best we could do.
After which, my medical treatment pretty much dwindled to a repeat prescription every month, and the occasional GP appointment if something acute happened. There was no point remaining on the books for the Pain Clinic or the neurologist or the butcher, baker or candle-stick maker, knackering myself out by hiking off to appointments at hospitals ten or twenty miles away. They had nothing further to offer me.
Wrong. There was a point. They could have provided extra confirmation about my condition and my limitations to the DWP. As it is, the DWP have a computer, and if the computer sees that I am only treated by my GP, and that I've only had a few appointments with my GP in the last 12 months... then it will calculate that there isn't much wrong with me and send me on my way. There are no prizes for attempting to "not be a burden on the NHS" and so on. That's not playing the game properly, it seems.
I have to try and convince the humans that the computers have it wrong on this one.
I'm going to be working on this for a while, blogging might become minimised.
Monday, February 18, 2008
I Demand A Recount
Friday: felt ok. Came back from work a bit sore, a bit tired, a bit glad it was the weekend, but nothing out of my ordinary.
COLD SNAP
Saturday: spent it in bed. A couple of hours propped up on pillows with the lappie, but mostly, snoozing.
Sunday: a bit better than Saturday, but still confined to the upstairs floor of the house. In the evening, a sudden downturn.
Monday: Almost back to my normal. I even fixed my own breakfast.
REALISATION: I'll be going to work today. I feel ripped off of my weekend. There should be rules about having a non-weekend due to sickness.
DISCLAIMER: Yes, I'm complaining about going to work. Rest assured that if I feel awful again later today, or tomorrow, and I have to call in sick, I'll probably complain about NOT going to work.
I bet you're grouchy too when you're this sore.
I will try and post something a bit more thoughtful over the next week.
COLD SNAP
Saturday: spent it in bed. A couple of hours propped up on pillows with the lappie, but mostly, snoozing.
Sunday: a bit better than Saturday, but still confined to the upstairs floor of the house. In the evening, a sudden downturn.
Monday: Almost back to my normal. I even fixed my own breakfast.
REALISATION: I'll be going to work today. I feel ripped off of my weekend. There should be rules about having a non-weekend due to sickness.
DISCLAIMER: Yes, I'm complaining about going to work. Rest assured that if I feel awful again later today, or tomorrow, and I have to call in sick, I'll probably complain about NOT going to work.
I bet you're grouchy too when you're this sore.
I will try and post something a bit more thoughtful over the next week.
Saturday, December 29, 2007
2007 - A Roundup
January
A wonderful birthday, followed by all sorts of hassle from a bunch of cowboys at a computer shop in Lowestoft which shall remain nameless but is found North of the bridge.
February
Benefits-wise, I found out that my Incapacity Benefit (the money you get to live on if you can't work due to illness) was secure until 2010, but then I had to start on renewal forms for my Disability Living Allowance (that's the one you get regardless of work or income to cover the additional costs incurred by the fact of your disability). The form filling and a bout of particularly poor health meant that I spent a lot more time than usual laid up in bed, but I managed to get out for a bit on Steve's birthday, which we both enjoyed.
March
A friend of mine, Jesse, sadly died after many months fighting the double-whammy of heart problems and cancer. I couldn't blog about it at the time - Jesse had been forced to close his blog a few months previously because of a spate of trolls who seemed to be getting their kicks by attacking several vulnerable people (myself included) online from behind a shield of anonymity, and it didn't seem right to offer them another chance to have a pop at him in death.
In March, I also taught myself to knit, which has paid dividends, and first gave thought to buying a Roomba.
April
I found Web of Wool and Twitter which have both been positive in different ways. My knitting progressed, my health picked up a bit, and I met The Locum Doctor who was covering for my GP while she was on maternity leave.
May
May started with Blogging Against Disablism 2007. Unfortunately the same day I also ran up against problems with The Locum Doctor (which we found out several months later were due to an error on the front page of my medical records, but not before The Locum Doctor's Report had lost me my DLA award).
Pip and I made all sorts of plans to have a nice summer with the Littlun, but these were scuppered by various factors including the way the summer of 2007 never really got off the ground. Days out enjoying the sunshine were swapped for feeling extra-awful every time the weather changed. On the other hand, this meant my knitting really took off.
June
Again, a bad start, as I found out for definite that I had been turned down flat for DLA, despite my condition not having improved. June consisted mostly of short bursts of Doing Things to try and mount my case for a reconsideration of that decision, and long periods of waiting for the DWP to do the things they were supposed to do, like sending me forms and information I'd asked for.
I did a fair amount of blogging ("The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot..") and quite a lot of knitting - I completed my needle case which really helped me to stay positive, having a tangible item that I had created. There was also a happy co-incidence when "NS13", a major overhaul of an online game I play, happened just at the same time as me having sent off my DLA Reconsideration paperwork, so I had plenty to get on with while I waited for the reconsidered response.
July
The reconsidered response was another rejection of my DLA claim. I was gobsmacked, as was everyone around me, the people who could see the effect my illness had on my life. "Two years ago, the facts I told them resulted in me being given the middle level of DLA Care component and the higher level of the Mobility component. Today, those same facts result in zero. How can this be right?" I had the right to appeal, but I wasn't well enough - even doing the forms had been making me more and more ill. I made the decision not to appeal and my family and friends breathed a big sigh of relief. It was easier for them to support a Mary with no money but some energy, than a Mary with some money but no energy and a shedload of stress.
August
There was a noticeable improvement in my health, probably due to a combination of the DLA-stress and time-consumption being removed from my life, and the weather steadying out a bit. With the help of other bloggers, I learned to knit in the round on double-pointed needles and I successfully knit my first sock, which I was very proud of. Pip and I took Littlun for a haircut, a course of action it has been decided to NOT repeat. Pip has since arranged to every so often borrow a set of clippers from a friend and do the boy's haircut in short bursts when it's most possible.
September
The second sock was completed, making a matching pair, and even now I'm still very proud of them. Steve and I set a date for moving in together and I began winding up my life in Lowestoft. Sorting out the admin side of moving house was nowhere near as stressful as dealing with the DWP/benefits lot. In fact the only bit that caused any significant trouble was... the DWP/benefits lot.
I had a doctor's appointment with my Regular GP, back from maternity leave. I told her what had happened with my DLA claim. She was shocked, so I told her about what happened with The Locum. She was even more shocked, checked my records... and found that the front page had never been updated to include ME/CFS as an "ongoing condition". Oops.
October
I finished my first knitted garment - a jumper for the Littlun - just in time for Steve to give it to him when he drove a van to Lowestoft to pick up the last of my stuff from my flat. As time went on I settled more and more into living with Steve, and initiated the wrangling with the DWP/Jobcentre to try and get them to help me into paid employment.
November
Joined Ravelry. Bought a Roomba. Realised that life really is quite a lot easier with Steve around, which allowed me to increase my estimate of how many hours of work I could do per week, which in turn meant a higher chance of a job advertised in the local paper matching my spec. In the space of five days I spotted a suitable job-ad, sent off my CV, was offered an interview, attended the interview, and was offered the job. I started work on Tuesday November 13th. It took the rest of the month to organise help with viable transportation to and from work - DWP again, causing more trouble and stress than the job itself. At the end of the month, a really nice surprise - flowers and chocolates to welcome me to the team and congratulate me on learning the job so quickly.
December
It wouldn't really be a month without a cockup from the DWP, and December was no exception. Despite telling several departments in several formats that I had started work, I noticed they were continuing to pay benefit into my account. Happily they've stopped now, but I've yet to get an official explanation or find out what happens to the erroneously-paid funds still sat in my bank account.
Christmas fell in just the right way so that I had a full five days off work - Saturday, Sunday, Christmas Eve Monday, Christmas Day Tuesday, Boxing Day Wednesday. Steve and I went to stay in Lowestoft so I could see my friends and family again. It was absolutely wonderful. We travelled back here on Boxing Day (Wednesday) and I was back at work on Thursday afternoon, which was a bit much for me, but luckily we're past the Christmas rush so I wasn't letting anyone down by being a bit groggier than usual. I'm getting another long weekend for New Year as well, Saturday, Sunday, New Year's Eve Monday, New Year's Day Tuesday, and we're not going anywhere, so I'm hoping that New Year will allow me to fully recover from Christmas and then I'll be back to my normal levels again.
All in all, it's been a busy year, with more ups than downs. It started well and ended even better. I'm happy, loved, secure, productive and relaxed. I'm looking forward to 2008.
Happy New Year.
A wonderful birthday, followed by all sorts of hassle from a bunch of cowboys at a computer shop in Lowestoft which shall remain nameless but is found North of the bridge.
February
Benefits-wise, I found out that my Incapacity Benefit (the money you get to live on if you can't work due to illness) was secure until 2010, but then I had to start on renewal forms for my Disability Living Allowance (that's the one you get regardless of work or income to cover the additional costs incurred by the fact of your disability). The form filling and a bout of particularly poor health meant that I spent a lot more time than usual laid up in bed, but I managed to get out for a bit on Steve's birthday, which we both enjoyed.
March
A friend of mine, Jesse, sadly died after many months fighting the double-whammy of heart problems and cancer. I couldn't blog about it at the time - Jesse had been forced to close his blog a few months previously because of a spate of trolls who seemed to be getting their kicks by attacking several vulnerable people (myself included) online from behind a shield of anonymity, and it didn't seem right to offer them another chance to have a pop at him in death.
In March, I also taught myself to knit, which has paid dividends, and first gave thought to buying a Roomba.
April
I found Web of Wool and Twitter which have both been positive in different ways. My knitting progressed, my health picked up a bit, and I met The Locum Doctor who was covering for my GP while she was on maternity leave.
May
May started with Blogging Against Disablism 2007. Unfortunately the same day I also ran up against problems with The Locum Doctor (which we found out several months later were due to an error on the front page of my medical records, but not before The Locum Doctor's Report had lost me my DLA award).
Pip and I made all sorts of plans to have a nice summer with the Littlun, but these were scuppered by various factors including the way the summer of 2007 never really got off the ground. Days out enjoying the sunshine were swapped for feeling extra-awful every time the weather changed. On the other hand, this meant my knitting really took off.
June
Again, a bad start, as I found out for definite that I had been turned down flat for DLA, despite my condition not having improved. June consisted mostly of short bursts of Doing Things to try and mount my case for a reconsideration of that decision, and long periods of waiting for the DWP to do the things they were supposed to do, like sending me forms and information I'd asked for.
I did a fair amount of blogging ("The reason I'm blogging when I should be working on my response, is because after a couple of sensible, thought-out responses, referencing evidence on my forms and the report from the specialist clinic and so on, I got to a point where all I could think of to type was "read my goddam forms, you morons". I doubt this would go down well with the reconsideration lot..") and quite a lot of knitting - I completed my needle case which really helped me to stay positive, having a tangible item that I had created. There was also a happy co-incidence when "NS13", a major overhaul of an online game I play, happened just at the same time as me having sent off my DLA Reconsideration paperwork, so I had plenty to get on with while I waited for the reconsidered response.
July
The reconsidered response was another rejection of my DLA claim. I was gobsmacked, as was everyone around me, the people who could see the effect my illness had on my life. "Two years ago, the facts I told them resulted in me being given the middle level of DLA Care component and the higher level of the Mobility component. Today, those same facts result in zero. How can this be right?" I had the right to appeal, but I wasn't well enough - even doing the forms had been making me more and more ill. I made the decision not to appeal and my family and friends breathed a big sigh of relief. It was easier for them to support a Mary with no money but some energy, than a Mary with some money but no energy and a shedload of stress.
August
There was a noticeable improvement in my health, probably due to a combination of the DLA-stress and time-consumption being removed from my life, and the weather steadying out a bit. With the help of other bloggers, I learned to knit in the round on double-pointed needles and I successfully knit my first sock, which I was very proud of. Pip and I took Littlun for a haircut, a course of action it has been decided to NOT repeat. Pip has since arranged to every so often borrow a set of clippers from a friend and do the boy's haircut in short bursts when it's most possible.
September
The second sock was completed, making a matching pair, and even now I'm still very proud of them. Steve and I set a date for moving in together and I began winding up my life in Lowestoft. Sorting out the admin side of moving house was nowhere near as stressful as dealing with the DWP/benefits lot. In fact the only bit that caused any significant trouble was... the DWP/benefits lot.
I had a doctor's appointment with my Regular GP, back from maternity leave. I told her what had happened with my DLA claim. She was shocked, so I told her about what happened with The Locum. She was even more shocked, checked my records... and found that the front page had never been updated to include ME/CFS as an "ongoing condition". Oops.
October
I finished my first knitted garment - a jumper for the Littlun - just in time for Steve to give it to him when he drove a van to Lowestoft to pick up the last of my stuff from my flat. As time went on I settled more and more into living with Steve, and initiated the wrangling with the DWP/Jobcentre to try and get them to help me into paid employment.
November
Joined Ravelry. Bought a Roomba. Realised that life really is quite a lot easier with Steve around, which allowed me to increase my estimate of how many hours of work I could do per week, which in turn meant a higher chance of a job advertised in the local paper matching my spec. In the space of five days I spotted a suitable job-ad, sent off my CV, was offered an interview, attended the interview, and was offered the job. I started work on Tuesday November 13th. It took the rest of the month to organise help with viable transportation to and from work - DWP again, causing more trouble and stress than the job itself. At the end of the month, a really nice surprise - flowers and chocolates to welcome me to the team and congratulate me on learning the job so quickly.
December
It wouldn't really be a month without a cockup from the DWP, and December was no exception. Despite telling several departments in several formats that I had started work, I noticed they were continuing to pay benefit into my account. Happily they've stopped now, but I've yet to get an official explanation or find out what happens to the erroneously-paid funds still sat in my bank account.
Christmas fell in just the right way so that I had a full five days off work - Saturday, Sunday, Christmas Eve Monday, Christmas Day Tuesday, Boxing Day Wednesday. Steve and I went to stay in Lowestoft so I could see my friends and family again. It was absolutely wonderful. We travelled back here on Boxing Day (Wednesday) and I was back at work on Thursday afternoon, which was a bit much for me, but luckily we're past the Christmas rush so I wasn't letting anyone down by being a bit groggier than usual. I'm getting another long weekend for New Year as well, Saturday, Sunday, New Year's Eve Monday, New Year's Day Tuesday, and we're not going anywhere, so I'm hoping that New Year will allow me to fully recover from Christmas and then I'll be back to my normal levels again.
All in all, it's been a busy year, with more ups than downs. It started well and ended even better. I'm happy, loved, secure, productive and relaxed. I'm looking forward to 2008.
Happy New Year.
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