Second lesson

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?

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:

• 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.

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.

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.

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:

• 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?

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.

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.

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.

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.

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.

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.

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.

Urrrrgh

I have Extra Lurgy. Yep, on top of the usual, I've caught one of the glorious bugs that are floating around at this time of year, and I'm feeling crap. Coughing, wheezing, feverish, glandular, snot-ridden Crap. The last couple of nights have been increasingly bad in terms of sweaty-shivering unpleasantness, and last night in particular was just short bursts of sleep in between painkillers and needing another drink of water.

Luckily (although I'm not sure that's precisely the word I'm looking for), it's the weekend, so I'm able to be mostly in bed. I have a good supply of various strengths of painkillers (advantage to chronic illness), I have plenty of Strepsils, I have some Olbas Oil and I have a couple of boxes of tissues. I also have a Steve, who is slightly concerned and fussing a little - but mostly in terms of running me a bath and making me cups of tea, which, you know, I'm really not complaining about.

What is worrying me is tomorrow, when I am supposed to be at work for four hours. Usually when I've been bug-ill on top of everyday-ill, it's been a case of curling up in bed until it's gone. Now I'm working, that's not an option.

I really, desperately don't want to take time off sick.
I really, desperately don't want to make myself iller again in the long-term sense by not allowing myself a chance to recover from this virus (that's the most likely thing that made me long-term ill in the first place).

I don't want to let down the people I work with by being unavailable at the busiest time of year, making them do my share of the work.
But I also don't want to turn up at the shop, do half an hour's working, then pass out, and make people not only have to do my share of the work, but also make them have to spend time fussing over me, making sure I get home safely, writing it in an incident book and god knows what else.

Hopefully I will have intensive rest today, a much better night tonight, and feel better enough in the morning that I can dose up at lunchtime, go to work and just say "look, I'm going to have to be a bit careful today," but still be more or less functional for those four hours.

----------------------------------------------

In other news, Reynolds at Random Acts Of Reality is having a competition to win some books. I've had no ideas as yet.

Job Offer

Got the phone call at lunchtime today, and I have been offered the job.

Amazing. One application, one interview, one job offer. I had been under the impression it wasn't meant to work like that.

The manager asked if I could start Monday but I've said Tuesday because I need to go to the Jobcentre and get all that stuff sorted out.

It's sort of casual to begin with - so if I end up after a week or even an afternoon of it going "owww, eeek, I cannot do this after all" then I can just leave, no harm, no foul, which is good, but does add a little to the nervousness.

I am very excited and nervous. I also have this panic on about how I must get all the housework done in the next two days because once I'm working I won't have the energy any more.

A little bit of help in that direction though - the Roomba is now up and running and as I type, is cleaning the bathroom and landing. Well, the carpets, anyway. It seems to be having fun. I still think it's cute. It is still trying to attack Steve periodically. The cliff-sensor works, so it's not falling down the stairs, but there is one of the bedroom doors that doesn't shut as securely as the others and the Roomba keeps trying to nudge it open.

It seems to put Steve in mind of the Luggage from Discworld - pottering about with homicidal tendencies.

Oh, and from what I hear, my friends and relatives in Lowestoft are all okay. Which is good.

"Access" to work

I had my appointment with the Disability Employment Adviser (DEA) at the Jobcentre yesterday. We spent about an hour talking about what I would like to do, what my limitations are, what help I want, and the various rules about work and Incapacity Benefit. So that's pretty much the same conversation I had with the IB adviser last week, except the DEA seemed to know a bit more about the IB/work rules, or maybe she just felt more inclined to show off her knowledge.

The upshot is that I've been referred (surprise!) to Remploy, who hopefully will get in contact soon. I remain unsure about exactly who they will refer me to what they will do for me.

Remploy or otherwise, the DEA thinks I should be eligible for an Access to Work grant for my transport, assuming I can get my doctor to confirm, in writing, that I do need the exact physical help that I am requesting.

I have registered at the local surgery, and I've had a kind of introductory appointment with the nurse, so that if I turn up because I'm oozing disturbingly, the system won't just throw up a blank - they have my height, weight, blood pressure, brief family history, that sort of thing. But I can't have a routine appointment with a doctor until my notes arrive from Lowestoft. This could take some weeks. When they arrive, the surgery will contact me and then I can make a routine appointment to see my named GP.

Then I get a ten-minute appointment slot to try and persuade said GP - who may or may not pay attention to my previous GP's notes, and whose standpoint on the veracity of my symptoms may well be unsympathetic - to write a letter saying "Mary can't actually walk very far at all and is unfit to drive". I'm trying not to think about that bit. Let's assume I'm successful.

This letter combined with the geographical fact of the house being some distance from the nearest bus route, should persuade the AtW gatekeepers that I am eligible for their scheme. After that I'm on my own until I have obtained a secure job offer to show them, and then the DEA will do the paperwork to apply for the grant for...

*curls up and sobs* Can someone tell me again why it is that I am doing this instead of simply being Steve's housewife?

Anyway. Once I have a GP's letter, I will finally be able to apply for jobs while feeling about 80% certain that when I begin a job I will be able to get to and from the workplace while remaining in profit.

Here's the rules:

1. If I do voluntary work for less than 16 hours a week, I must tell the Jobcentre, but it doesn't affect anything much - mostly it just covers my back if someone tries to report me for fraud saying "she works at [charity]!" I can get my expenses reimbursed by the voluntary-employer, but must not be paid for my work.

2. If I do paid work earning up to £20 a week, I must tell the Jobcentre, but I can keep the money and keep my benefit.

3. If I do paid work for less than 16 hours a week, earning up to about £80 a week, I must tell the Jobcentre, but I can keep the money and my benefit, for either 6 months or 12 months** depending on what my support status is deemed to be. After that time I must choose to (a) give up my benefit or (b) give up the job and not work again for a year.*

4. If I do paid work for more than 16 hours a week... well, that's all irrelevant really, there is not a snowball's chance in hell of me being able to do that any time in the forseeable future.

5. If I earn more than the aforementioned £80 a week... this is probably irrelevant too although I suppose it could happen. If it does, I'm simply telling the Jobcentre to stick it where the sun doesn't shine, as I wouldn't have a problem with taxi fares.

*Incapacity Benefit is about £80 a week. Wages for ten hours work at £5 an hour is £50 a week. So basically, I would have to decide whether to work my backside off for £50 a week plus my personal pride, or sacrifice my pride and sit on aforementioned backside for £80 a week**. What would you do?

**The idea of the time limit is that it forces encourages claimants to increase their hours to more than they can handle, sending them crashing back onto full-time benefit again more than 16 hours per week, and claim Working Tax Credits instead. Believe me when I say that the Tax Credits system is even more of a nightmare than the Jobcentre system, and that I would sooner work in the sex industry and live on the streets, than attempt to deal with Tax Credits again.

That explains a lot

I had a doctor's appointment the other day, and happily, it was Dr W, my GP of many years, just back from her maternity leave. The whole DLA, GP on leave, locum doctor who wouldn't listen to me thing has finally become much, much more clear.

(Brief recap for any new readers: earlier this year I got turned down for half my disability benefit largely on the basis of a report by Dr M, a locum who was covering the maternity leave of Dr W. This baffled and upset me as Dr W has always supported my benefit claim - it was her who insisted I stop work. Dr M reported that I suffer from depression, and that I have no difficulty doing many everyday tasks. This is inaccurate.)

It boils down to: Dr W is an extremely good GP. However, she would be a rubbish data entry clerk.

If you were to read the actual notes that Dr W has written about me over the last couple of years, they are covered in terms like "ME", "Chronic Fatigue Syndrome", "Post-Viral Fatigue Syndrome" and so on. They describe problems I have and how I overcome them, medications that have been tried and the effects they had, how I got on at the specialist ME/CFS clinic, everything you could want to know. You would see copies of the sicknotes with "Chronic Fatigue Syndrome" written large and clear, right up to the date when the DWP decided I didn't need to submit sicknotes any more.

If, however, you were only to glance at the front page of my computerised medical notes, you would have seen:

"Current ongoing conditions: none"

You would also see a note from the late 1990s suggesting I should be monitored for symptoms of depression and anxiety. The significantly more recent psychiatrist's letter giving me a mental health all-clear, is jumbled up with the reports from every other investigation into the possible causes of my illness that I underwent at that time - psychiatrist, neurologist, physiotherapist, and probably the butcher, baker and candlestick maker for good measure. You wouldn't see it unless you hunted for it.

Add to this, that I am not one of "those" patients, who marches off to the doctor every couple of weeks clutching an article about some revolutionary new cure or treatment or research. Since the Incapacity Benefit people decided I didn't have to provide sicknotes any more, I haven't actually been to see my GP about the whole ME thing, I've just turned up when I start oozing. Okay, so my tendency to get the sort of tonsillitis or ear infection that makes a practised GP recoil in horror and begin writing the scrip for antibiotics before they've even sat back down is because of the ME, but that's beside the point. If you look at the summaries of my recent visits on the notes, they're nothing to do with the ME.

So, let's look at my encounters with Dr M from a more sympathetic point of view.

A patient wobbles slowly into the consulting room, leaning on a walking stick and pulling faces. She gasps as she sits down, and explains she has come to see you about an ear infection. You look in her ear and sure enough, it's gunky. You look at her throat and that doesn't look too healthy either. You ask about other symptoms and she says that although she's having a bit more difficulty with certain things, it's just like an extra helping of her normal symptoms.

You quickly look at the notes on the screen. No ongoing conditions, the last thing she was here for was a throat infection, what's going on? What "normal symptoms"? What's with the stick? You ask what she means and she looks at you a bit funny before saying "the ME, or CFS, or whatever you want to call it." You spot a flag telling you to monitor her for mental health problems. Gently you ask a couple more questions. The patient says she's been like this for a couple of years, and no longer has a job. You can't quite make up your mind whether she's actually ill, or if she's a benefit scrounger, or if she's under some kind of delusion that she suffers a physical illness - she seems quite certain that it should be on her notes somewhere - but right now it's not terribly important. She has come here with an ear infection, she very obviously HAS an ear infection, so let's treat that and leave the rest for another day. Then, when you think you're home free, she tells you her benefit is being reviewed and that you may get a letter through asking for a GP's report. Great.


This also explains why Dr M was kind of obstructive when I asked to see my medical records. It could be psychologically damaging for a delusional person to read that their family GP thinks that they are delusional...

Dr W has of course apologised and corrected the front page. She's also made sure to put in plenty of information in the notes for our recent consultation a couple of days ago that might be important for whatever new doctor I get in Leamington - basically making sure the relevant details are at the top for a new GP. Yes, I realise there is a possibility that I am delusional and she is humouring me, or that I hallucinated the whole thing. But that just gets too metaphysical. I shall stick with the logic that, if the psychiatrists don't want to try and treat me, or even put me on a waiting list, and I'm not on psychiatric medication, and I'm not crying all the time, then I'm okay in that respect.


In other news... Stage One of the move has gone well. I will write more about it another time. For now, suffice to say that I am in one piece, partially unpacked, and very happy.

Discoveries

For various reasons, it's seemed like a good idea to start tidying up the flat a bit this week. It's not UN-tidy as such - day to day things like the dishes and the laundry and making sure there's no new life-forms in the fridge are well under control - but there's some less urgent stuff that wanted doing, like pruning my wardrobe and vacuuming under the bed.

This morning I had a wardrobe full of clothes and Nothing To Wear. Now I have five bags of clothes for my sister to go through and a wardrobe that's about a third full of everyday clothes which (with only one or two exceptions such as my one Smart Suit) I have worn and washed at least once in the last twelve months. I think this is an improvement.

I also found at least half a dozen pairs of black tights (I have kept two pairs which were still on the cardboard), a couple of bits of lacy underwear which had hidden behind my socks and still had the tags in, and three or four rather small tops which I used to wear when I was very fit and went out to dance for several hours at least once a week. I'm not even going to try to try them on, I don't think I could deal with that kind of trauma. Sister Dearest will love them though.

Having got over that little blast from the past, I started to tackle the depths of under my bed. At first it wasn't too bad, it was all stuff I knew was there. A plastic box containing my spare duvet. A pair of wings and a halo from a fancy dress competition in the aforementioned going-out-and-dancing days (*sniff*) that someone borrowed last year. A large sports bag which I have lugged around more train stations than I care to remember while on weekend jaunts to see various internet people. I could even run up and down stairs while carrying it and never missed a connection...
*sniff*
*sneezes from dust*

This didn't put me in the right frame of mind to hit The Paperwork.

There was a period, when I first got sick, where I didn't really realise what was going on and thought I just had a couple of nasty bugs and would get over it. This wasn't a happy time. When I look back now, I realise I was being ridiculous, but at the time, I thought I was making sense.

So there were a number of incidents to do with me fainting but refusing to go to hospital because I was running late for work and had clients to see and "it's just a bit of flu or something". There were also a number of times when I walked into the building where I worked and someone from another organisation took one look at me and pretty much forcibly ushered me into their car and drove me straight back home.

In these circumstances, paperwork wasn't top of my priorities. I would come in the front door, pick up my post, go up the stairs to my flat, and lie down on my bed and go to sleep, complete with my handful of post, my glasses, my coat, my bag, my shoes, everything. Stuff on the bed got pushed off the bed, and eventually underneath it.

Which is why today's discoveries were lurking there to upset me. I'm not sure what's worse. There's the stuff I do remember - handouts from work-based training I did and meetings I went to, printouts of emails, a magazine, some train tickets - which remind me of the life I used to have. And then, there's the stuff I don't remember, and it scares me a little that I don't remember it. Like, a tesco clubcard and two key fobs, still stuck to the letter they came with. The name is mine, the address is here, but I can't remember applying for it - and how can I have been too knackered to sign the card and stick it in my purse? Or an invite to a party I'm fairly certain I didn't go to. I hope I at least phoned to apologise.

I'm feeling very angry and I can't put my finger on exactly why. It's not that I want my old life back. I mean, it would be nice to not be in pain, or confined to bed so much (and it would be nice to be a size 10 again). But if giving up the pain and malaise (and excess flab) also meant giving up the friends I've made, the relationship with Steve, the steadiness I've acquired, and picking up at age 23 again, I would not do it.

I think the anger might be because the shift in pace and circumstances was not my choice. I didn't want to become unemployed, and I didn't "deserve" to get ill or do anything that made me ill. It was all completely out of my control and I hate that.

Carrying on from that, I think it's also affected by Sister Dearest. She's currently the same age I was when it all fell apart, and she *is* in control of her life, she *has* chosen to leave her job, she actively says and does things to steer her life in the direction she *wants* it to go.

Nah. I think it's mostly because I have done too much physically today. Also I have been inhaling two-year-old dust and that can't be good for you. Here's hoping I feel perkier tomorrow and that Sister Dearest enjoys my castoffs.

Oh, and good news. I have a routine doctor's appointment coming up in two weeks, and I've just found out that it will be with my actual proper GP, the lovely Dr W, rather than the smegging bloody Locum who cocked up my DLA. Hurrah!

Cooking

I got myself a new cookery book the other day. It's called Just like mother used to make and it's by a guy called Tom Norrington-Davies. On the back are a couple of quotes from reviews, and the one from The Times says that "the recipes are simple to follow and comfortingly delicious to eat." Marvellous, thunked Mary. This is the book I need.

Oh dear. Oh dear oh dear.

I should have looked at the name, really. This book is written by a man, who has access to many varied London shops, and above all, can afford a dishwasher. This is speculation, of course, but if he washes all his own dishes I will be very surprised.

I'm on page 82 now and I am stunned with the amount of faffery this guy suggests. It's the sort of cooking that's probably fun a couple of times a week if you're the sort of person who enjoys cooking and gets a kick out of accomplishing a meal (and you have a dishwasher).

A particular area where Tom and I have fallen out is over the issue of soup. He describes several "comfort soups" which according to him are "low maintenance" and "great food for those times when we are under the weather." Under the weather, that's me, let's take a look. Tomato soup, great.

First, he wants me to peel and chop onions, garlic (actually this should be "bruised" whatever the hell that means), a leek, and some carrots. Washing-up count so far, at least one sharp knife and chopping board, and a bowl to put the chopped veg in, plus it's taken me four hours due to keeping needing to sit down, the odds are I've cut my fingers, and we've not even got to the recipe instructions yet. You're then meant to stand at the cooker for ten minutes "keeping an eye on" the veg while they sweat in a little oil in a covered saucepan (washing-up count: saucepan, lid, wooden spoon). Next, we add some sugar and some tinned tomatoes (tinned? Tom, I'm shocked, you mean I don't have to grow them myself?), whack the heat up, and stand at the cooker for at least five minutes, "stirring constantly". Add some water (he prefers stock but he can stick that up his jumper) and allow to simmer, uncovered, for about an hour, because I always wanted to turn my flat into a tomato-scented sauna. Finally, we chuck it through the blender (washing up count: one blender which he doesn't tell you must be washed before the soup sets on the blades - handwashing blenders is Not Good) and add milk, salt and faff to taste. Serve (washing up count: bowl, spoon, and he also wants nice fresh bread but we're just not going to go there).

Total washing-up: two bowls, one spoon, one wooden spoon, blender, saucepan and lid, sharp knife(s), chopping board(s), and I bet the work surfaces and cooker hob got splattered too.

Tom. Mate. If you ever feel really under the weather, here's what you do.

Get the bowl you intend to eat from, the spoon you intend to eat with, a tin-opener (I know you have one because of those tinned tomatoes) and a can of Heinz Cream of Tomato soup. Open the can and empty it into the bowl. Put the bowl into the microwave and nuke it for one minute. During this minute, assuming you recycle, peel the label off the can and rinse the can under the tap before chucking it in the appropriate bin. Rinse the tin-opener too and leave it on the draining board to air-dry. Get the soup from the microwave, stir it with the spoon, and then put it back in for another minute. Have a little sit-down. The microwave will beep but don't get excited, just in your own time get up and get the soup. The bowl will be hot, be careful. Give it another stir and eat. If it makes you feel better you can put a sprig of freshly plucked basil on top, or an artistic little swirl of cream.

Total washing-up: one bowl, one spoon.

I'm not even going to talk about what he expects me to do about mashed potatoes. Still, I have another 106 pages to read and hopefully there will be some genuinely simple and easy thing that I can serve up with microwave mash and instant gravy.

I don't want to be a domestic goddess, I just want simple easy food!

Good Things Come...

At Steve's at the moment. I woke up this morning at about 7:30am in quite a bit of pain, and also rather hungry. I spent half an hour stretching, rolled myself off the bed and wobbled out of the bedroom to the bathroom.

Mistake. It's suddenly got very cold. Our bedroom was warm enough - two warm people sleeping in it all night with the doors and windows closed will do that - but as soon as I opened the bedroom door, the chill hit me and my already sore, inadequately stretched muscles just slammed tense. My plans of morning-routine-ness dissolved, I went to the loo (*waves at people doing dodgy google searches*) and then back into bed as fast as I could.

In bed, and gently stretching to not much avail, I considered the options. I must take painkillers. To take painkillers, I must eat something. To eat something, I must go downstairs (this is the big benefit of the flat). To go downstairs, I will have to deal with the cold again, so I must put some clothes on. To put some clothes on, I need a certain amount of movement, of flexibility. I carried on stretching as best I could for about an hour, by which point things were as good as they were getting. Time to get dressed.

I got dressed carefully, which goes like this: Socks first, done sitting on the floor, and an outsize thick cotton t-shirt (easier than anything tight or anything with buttons), arms first, in front of me rather than in the air, and then gently over my head. Then sit on the edge of the bed, and dangle my pants from one hand while using the other hand to pull my leg up and hook my foot into the appropriate leg-hole. Repeat for the other side. Still sitting, attempt the same manoeuver for my jeans. Fail miserably. Fall off bed. Wrench already-sore back. Yelp. Steve wakes. Reassure Steve, and clamber back onto the bed, pause to get head together, and try again. Succeed. Half-roll along the edge of the bed to a standing position, supporting myself with hands on the bed. Stand properly, pull up pants and jeans. Deep breath. Check for mobile phone (in case of emergency) and painkillers and I'm good to go.

Dressed, the next task was to get down the stairs. There was no way I could safely walk it, so sliding down on my bum it was. Each stair I bumped down jarred my back and I had to stop three times before I reached the bottom. My walking stick and slippers were there waiting and I levered myself up without too much trouble, and on into the kitchen.

The first thing I did was flick on the heating. Then I got myself a glass of Innocent smoothie, my favourite strawberry and banana one. A glassfull contains 19 grapes, 10 strawberries, half a banana, and a squeeze of orange and lemon juice. That's got to be a couple of the five-a-day, and it tastes nice too. Highly recommended. To combat the health, I spread a slice of bread with Nutella, which I also recommend, and sat down to eat. Mostly this went well, until I dropped a piece of chocolate-smeared bread onto my jeans. Sticky side down, obviously. Still, it's easier to put jeans in the wash than to clean a carpet, so no harm done.

Thus fed, I swallowed the painkillers and wondered what came next - this was as far as my planning had got. I couldn't curl up on the sofa because of the chocolate spread on my jeans. I looked at the kettle, but although I really wanted a cuppa, I didn't like my chances for not pouring boiling water all over myself. My books and laptop and so on were all upstairs, so climbing it would have to be. Ouch. That is all. By the time I was halfway up, all ideas of laptops and books were gone from my head. I got to the top and lay on the carpet for a while, waiting for the throbbing to stop. Then I pushed off the jeans and crawled back into bed.

Steve is a wonderful, wonderful man. He was half-asleep still, but he wrapped me up in warmness and put lovely hot hands on the worst bits of pain, my neck and my back. The first stage of the painkillers began to take effect and I honestly felt that I was just going to evaporate away like a cloud of steam from a kettle (I still had that cuppa on my mind). All the cold and hard and struggle started to be slowly but surely replaced by warmth and soft and relaxy goodness. The pain was still extremely present, but it just didn't matter quite so much. Being "looked after" like that doesn't make me any less ill, but it makes it much easier for me to manage.

Of course, it couldn't last, it never does. After a while I simply HAD to start moving and stretching again. I don't want to wake him up, so I've come through here. But, I'm all happy in a haze of codiene and cuddles.

I reserve the right to come back and edit this post when I'm not quite so out of my tree.

What to write?

First, a knitting update. I haven't stopped, I've just not been doing anything I felt was worth blogging about. I'm working on a needle case (yeah, a knitted knitting needle case, slightly recursive) and although the pockets are all different and use all sorts of different stitches and techniques I haven't played with yet, all I've been doing for the last couple of weeks is the BIG outer panel, which is going to be something like 27inches square. I've done 25inches of it, I'm on my fourth hank of wool. But I have this horrifying feeling that I've misconstrued an instruction right way back by the start, like, four or five rows in, and that "work four more rows even" may have meant knit row, purl row, knit row, purl row, rather than knit row, knit row, knit row, knit row. I don't know. I remember asking the peoples at the knitting group what it meant but I can't remember exactly what whoever helped me said and I know that, especially when I'm tired, I have a tremendous capacity to get things wrong.

Not that it overly matters. All it means is that one of the foldovers will be a bit... ridged. The main part is perfect - all knits, purls, slips, increases and decreases present and correct. Plus, it's a bloody big piece of fabric that I can totally hold up in my hands and say "I made this".

Anyway, tomorrow I'll go see mum and she'll have a look at it for me.

Steve should be coming to see me at the weekend, although we don't yet know which day, or when, or how long for. It is probably very bad that, although most of my excitement is "yay! I'm going to see Steve and have ALL the hugs!" there is a bit of me that is really quite looking forwards to getting my hands on the yarn he picked up for me from Web of Wool.

Knitting-voodoo-based gibbering ends.

So, I have a lot of half-written non-knitting posts as notepad files on my lappie desktop, but I don't know what ones to finish and post. Mostly they're ones that I started while in the maximum grip of my painkillers - there's something about codiene that, for some unknown reason, makes me chatter. Total verbal diahorrea. Anyway, here's some bits, and if any of you think I should expand on any of them, tell me.

1. Internet Addiction. I started writing this one at New Year. There was an article I had read about internet addiction and in this post, I look at their "signs of addiction", think about how they apply to me, and also consider where the line should be drawn between a hobby and an addiction, and how that line varies depending on what exactly the activity is.

2. The Baby Thing. About how the change in my health and personal circumstances has led to a different perspective on my lifelong desire to have a family, and things I'm having to consider which wouldn't have occurred to me before - some of the potential problems, and some of the potential solutions. Disabled or otherwise, I still intend to raise a child.

3. When Naps Go Bad. For anyone who thinks they envy me for being able to lie around all day snoozing. A warts-and-all picture of what quite often happens to me when all I have done is sleep for an hour or so.

4. Where Did My Day Go? About trying to trim down your activity levels to the bare essentials, how to define "essential", and how it compares to a more typical lifestyle of someone who is not yet disabled.