With the DLA crud dealt with, I've been just taking it easy, relaxing, trying to recoup some energy, that sort of thing. You remember I said it's been like dealing with an exam? Well, this is that big knackered empty feeling afterwards except the knackered part is multiplied by "I have long-term lurgy and have been overdoing it".
So there's been lots of blank time, just lying still and not thinking about anything at all. And there's been a lot of gently vegetating in front of the computer. Well, in the vicinity of the computer. In fact I've spent a good deal of time gazing at the patterns of light on a can of furniture polish that's on my desk. And watching my Sunshine Buddy - very soothing.
I've been particularly enjoying watching a lot of stuff on youtube by Tripod, a trio of comedy musicians from Australia. Particular favourites include Gonna Make You Happy for all the other Girlfriends of Geeks out there (you have to listen at least until 1:08, the whole thing is 3:52), Ghost Ship which is just very silly indeed, or this relaxing little bit of politics.
Those who know me will not be surprised to hear that my favourite is Scod, the one with the dark hair and glasses. Me and geeks with dark hair and glasses, it's just this thing and there seems to be very little I can do about it. Don't worry though Steve, you don't need to learn guitar.
Knittingwise, I've got my next project lined up - a hat for Sister Dearest - and she has picked a pattern and told me what colour she wants. I've got the needles and I'm just waiting on the wool. For some crazy reason, charcoal-coloured 100% merino wool yarn is tricky to get hold of in June. She wants black flowers embroidered on it. So if anyone has a handy end-of-a-ball of black yarn in their stash that they want rid of, I have a use for it. Also, I would like to flag my utter amazement at the knitting dedication of Dominocat.
Finally, it just wouldn't be a Saturday if I hadn't recieved some rubbish from the Department of Work and Pensions that requires action or query but that I won't be able to do anything about until Monday morning.
Luckily it's not a "worry" thing. There's a letter from the DLA department reminding me that I had said I had additional information to submit for my reconsideration and that if this is the case, I must post it to them ASAP (hurrah!) and one from I'm not sure what department, but not DLA, that starts with "thank you for informing us of your recent change in circumstance" which, ???!?!? because I haven't actually informed them of any changes, being as how nothing has, you know, CHANGED as yet. I hope it's just a pre-emptive thing because my original award of DLA expires on August 8th. If it is, that's a relief, because it means there was actually a department that were on the ball and I don't have to go see them on August 7th and say "ummmm...", but it is always as well to check these things, and write down the name of the person who explains it to you.
Saturday, June 30, 2007
Thursday, June 28, 2007
and now we wait
All the DLA stuff is now compiled, copied, and sent. Well, I say "all". They never did get round to sending me the copy of the medical report I'd asked for - in fact all they sent me was that half-baked Written statement of reasons and that took them two weeks. Still, it's something.
So they have a copy of the specialist report, and they have a copy of the certificate from my Incapacity Benefit renewal which confirms that the level of disability (by which I mean, the extent to which my condition hinders me from doing things in a usual manner) that I described on those forms was consistent with the medical evidence and is unlikely to change for a couple of years yet. They have a copy of a statement from Steve about my care and mobility needs, they have a description of what happened with That Locum (a considerably shorter, calmer and more polite version, but containing all the important bits). And, they have the step-by-step refutation of the ridiculous claims they made on the Written Statement of Reasons.
It is all immaculately calm and polite, full of "I ask you to bear in mind" and "obviously you have already read (blah) but I would like to reiterate" and as many references as I could make, all prefixed with "please see (evidence)".
A slightly interesting exchange when I went to the Post Office. I put the envelope on the scales and explained that I needed it to reach its destination within the week, preferably sooner, and that I needed proof of it having arrived and been signed for and accepted by the recipient. The gentleman on the other side of the counter nodded and asked me to pass the envelope through, he took it, looked at the address, and chuckled. Apparently the DLA address is rather notorious to frontline Post Office staff. The DWP "lose" an awful lot of stuff, it seems. I was worried that it might be a little bit paranoid to insist on proof of receipt as well as proof of delivery. Turns out it's the only really sensible way, especially if you've got a time limit.
There is only one thing I still have to do, and that's go to the council and get them to change the bit on my housing benefit that says "Disabled (in receipt of DLA)" to "Disabled (in receipt of long-term Incapacity Benefit)". This won't make any difference to what I receive, but will cover the gap between my original DLA award expiring and the renewal being approved, or indeed if the renewal isn't approved.
I'm not sure whether I want to try and do this by letter or in person. In person is trickier, and you don't have black-and-white photocopied evidence of what was stated - which has caused trouble for me before with them. But letters often don't get read properly, little things like they don't notice words like "not" or "no longer" - which has also caused trouble for me before with them.
I also know that I should be making a complaint to the DLA about the problems I've had, but part of me is worried this could be detrimental to my reconsideration (I don't believe in the Chinese Wall) and a large part of me doesn't want to have anything more to do with the department than I can possibly help. Your thoughts, as ever, are welcome.
So they have a copy of the specialist report, and they have a copy of the certificate from my Incapacity Benefit renewal which confirms that the level of disability (by which I mean, the extent to which my condition hinders me from doing things in a usual manner) that I described on those forms was consistent with the medical evidence and is unlikely to change for a couple of years yet. They have a copy of a statement from Steve about my care and mobility needs, they have a description of what happened with That Locum (a considerably shorter, calmer and more polite version, but containing all the important bits). And, they have the step-by-step refutation of the ridiculous claims they made on the Written Statement of Reasons.
It is all immaculately calm and polite, full of "I ask you to bear in mind" and "obviously you have already read (blah) but I would like to reiterate" and as many references as I could make, all prefixed with "please see (evidence)".
A slightly interesting exchange when I went to the Post Office. I put the envelope on the scales and explained that I needed it to reach its destination within the week, preferably sooner, and that I needed proof of it having arrived and been signed for and accepted by the recipient. The gentleman on the other side of the counter nodded and asked me to pass the envelope through, he took it, looked at the address, and chuckled. Apparently the DLA address is rather notorious to frontline Post Office staff. The DWP "lose" an awful lot of stuff, it seems. I was worried that it might be a little bit paranoid to insist on proof of receipt as well as proof of delivery. Turns out it's the only really sensible way, especially if you've got a time limit.
There is only one thing I still have to do, and that's go to the council and get them to change the bit on my housing benefit that says "Disabled (in receipt of DLA)" to "Disabled (in receipt of long-term Incapacity Benefit)". This won't make any difference to what I receive, but will cover the gap between my original DLA award expiring and the renewal being approved, or indeed if the renewal isn't approved.
I'm not sure whether I want to try and do this by letter or in person. In person is trickier, and you don't have black-and-white photocopied evidence of what was stated - which has caused trouble for me before with them. But letters often don't get read properly, little things like they don't notice words like "not" or "no longer" - which has also caused trouble for me before with them.
I also know that I should be making a complaint to the DLA about the problems I've had, but part of me is worried this could be detrimental to my reconsideration (I don't believe in the Chinese Wall) and a large part of me doesn't want to have anything more to do with the department than I can possibly help. Your thoughts, as ever, are welcome.
Sunday, June 24, 2007
One day to go...
... no, not that benefits rubbish, I'm talking about the important things in life. Kingdom of Loathing, a game to which Steve, myself, and several of our friends are utterly addicted to, is having a major overhaul.
Very Brief Explanation for Non-KoLers:
KoL is a text-based online role-playing game which draws heavily on the sort of humour found in Monty Python, Discworld, or The Hitchhiker's Guide To The Galaxy, as well as being full of "references" to songs, novels, adverts, historical events and that sort of thing. You create a character, you adventure in various zones, you gain experience, and as you gain experience you are able to do more things, visit more zones, wield bigger weapons and so on. Helpfully, you have a limited number of "adventures" per day, so you can't just sit there playing it for hours on end. You start as a Level One character, and then for each level you attain you are given a new quest, up until Level Eleven, when you are tasked with hunting down the Naughty Sorceress.
A month ago, the warning was given that "NS13 is nigh!" NS13 is a project that the dev team have been working on for a while. Primarily, it means the quest to hunt and defeat the Naughty Sorceress is being moved from Level 11 to Level 13, with new quests being inserted for Levels 11 and 12. There's also going to be about 30 new zones, 400 new items, 100 new monsters, and twenty new trophies. Certain aspects of gameplay are going to be tweaked about. Most importantly, there have been no full descriptions of what is staying the same and what is changing. There's been hints here and there, but nothing definite beyond what you've just read.
There is now One Day To Go until NS13.
So yes, anyway, the last month has seen players in the Kingdom trying to get ready. Some have been farming for meat (the in-game currency), some have been trying to get trophies that are considered likely to be unobtainable after NS13, some are stockpiling goods, while some are trying to liquidise their in-game assets. Some have just been repeatedly ascending (explanation here if you want it) as fast as they can.
My own strategy has been a combination of these - I've picked up a couple of trophies, amassed a reasonable amount of meat and goods, and made sure that both the characters I play are up to level 13. At this point I should make clear that by the standards of the forums, I am a very distinctly casual player.
Rollover occurs at 3.30am UK time - in other words, that's when the in-game Today becomes Yesterday and Tomorrow becomes Today. I'm not planning to wait up, but I bet a lot of people are. KoL's load is spread over eight servers but tomorrow, odds are they are going to be creaking with the strain of people bouncing in to explore the new content.
It is only a game, but it's one I enjoy, and have done for over a year. I'm currently somewhere between apprehension about the new game mechanics, a hint of annoyance at having my cheese moved, but overwhelmingly, excitement at the idea of lots of new content to explore.
Which is better than spending the evening stressing over my draft response to the Department of Work and Pensions.
Very Brief Explanation for Non-KoLers:
KoL is a text-based online role-playing game which draws heavily on the sort of humour found in Monty Python, Discworld, or The Hitchhiker's Guide To The Galaxy, as well as being full of "references" to songs, novels, adverts, historical events and that sort of thing. You create a character, you adventure in various zones, you gain experience, and as you gain experience you are able to do more things, visit more zones, wield bigger weapons and so on. Helpfully, you have a limited number of "adventures" per day, so you can't just sit there playing it for hours on end. You start as a Level One character, and then for each level you attain you are given a new quest, up until Level Eleven, when you are tasked with hunting down the Naughty Sorceress.
A month ago, the warning was given that "NS13 is nigh!" NS13 is a project that the dev team have been working on for a while. Primarily, it means the quest to hunt and defeat the Naughty Sorceress is being moved from Level 11 to Level 13, with new quests being inserted for Levels 11 and 12. There's also going to be about 30 new zones, 400 new items, 100 new monsters, and twenty new trophies. Certain aspects of gameplay are going to be tweaked about. Most importantly, there have been no full descriptions of what is staying the same and what is changing. There's been hints here and there, but nothing definite beyond what you've just read.
There is now One Day To Go until NS13.
So yes, anyway, the last month has seen players in the Kingdom trying to get ready. Some have been farming for meat (the in-game currency), some have been trying to get trophies that are considered likely to be unobtainable after NS13, some are stockpiling goods, while some are trying to liquidise their in-game assets. Some have just been repeatedly ascending (explanation here if you want it) as fast as they can.
My own strategy has been a combination of these - I've picked up a couple of trophies, amassed a reasonable amount of meat and goods, and made sure that both the characters I play are up to level 13. At this point I should make clear that by the standards of the forums, I am a very distinctly casual player.
Rollover occurs at 3.30am UK time - in other words, that's when the in-game Today becomes Yesterday and Tomorrow becomes Today. I'm not planning to wait up, but I bet a lot of people are. KoL's load is spread over eight servers but tomorrow, odds are they are going to be creaking with the strain of people bouncing in to explore the new content.
It is only a game, but it's one I enjoy, and have done for over a year. I'm currently somewhere between apprehension about the new game mechanics, a hint of annoyance at having my cheese moved, but overwhelmingly, excitement at the idea of lots of new content to explore.
Which is better than spending the evening stressing over my draft response to the Department of Work and Pensions.
Saturday, June 23, 2007
DLA503a, "Written Statement of Reasons"
It arrived in the post this morning, four sides of A4 that it took them 14 days to print out and put in an envelope for me. This supports my theory that the Department of Work and Pensions only ever send letters like this out to people to arrive on a Saturday, when the helpline is closed. They would have sent it sooner, but then it would have arrived at a time when the helpline was available and that would just be too sporting.
One side is just the usual "If English is not your first language..." and "we would welcome any comments, good or bad..." and about two sides were this information which is pretty general knowledge, it's the simple list of what they ask you to think about when you are considering whether you should apply for DLA or not.
And four paragraphs pretended to explain why I was not awarded DLA. It's not really very helpful stuff though. It says things like "you can cope with all tasks for preparing a cooked main meal for one person if you have the ingredients", but it doesn't say why they think this, you know, like "your response to section X indicates that..." or "your GP tells us...". This statement, and others like it, lead me to suspect that they didn't even read my answers on the form. In fact at the moment I'm feeling rather hard pushed to create a response beyond simply repeating the stuff that's already on my forms that they just obviously haven't paid attention to.
There's also a sentence that doesn't really make sense - I can only imagine that while copy/pasting standard responses, someone made a mistake, because it reads:
"You may require help at time with bathing but your conditions are considered to be reasonable well controlled with your levels of medication taken." (all spellings and punctuation reproduced exactly). I'm not sure why having a bath has any connection to the effect my medication has on my condition. I have No Idea how to respond to this statement. Ideas welcome.
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.
One side is just the usual "If English is not your first language..." and "we would welcome any comments, good or bad..." and about two sides were this information which is pretty general knowledge, it's the simple list of what they ask you to think about when you are considering whether you should apply for DLA or not.
And four paragraphs pretended to explain why I was not awarded DLA. It's not really very helpful stuff though. It says things like "you can cope with all tasks for preparing a cooked main meal for one person if you have the ingredients", but it doesn't say why they think this, you know, like "your response to section X indicates that..." or "your GP tells us...". This statement, and others like it, lead me to suspect that they didn't even read my answers on the form. In fact at the moment I'm feeling rather hard pushed to create a response beyond simply repeating the stuff that's already on my forms that they just obviously haven't paid attention to.
There's also a sentence that doesn't really make sense - I can only imagine that while copy/pasting standard responses, someone made a mistake, because it reads:
"You may require help at time with bathing but your conditions are considered to be reasonable well controlled with your levels of medication taken." (all spellings and punctuation reproduced exactly). I'm not sure why having a bath has any connection to the effect my medication has on my condition. I have No Idea how to respond to this statement. Ideas welcome.
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.
Friday, June 22, 2007
Day 15
Firstly, KNITTING - the needle case is complete!
My sewing is not the neatest in the world, but I would describe it as "passable". I don't look at the finished product and think "dear god, the Littlun has snuck in during the night and tried to finish it off for me" so it's all okay.
The Fair Isle pocket looks rubbish, the tension is crappy so at one edge of the pocket the green Vs are too big and on the other edge they're too tiny. But at least I now know that doing Fair Isle drives me bonkers and doesn't look good on completion, so I can avoid it from here on in.
The beaded pocket, on the other hand, looks lovely. I'm quite proud of that. Plus, I'm proud of the sheer acreage and variety of knitting that I have actually accomplished. If you'd told me when I started, back in March, that I would be able to do that by June, I would have laughed at you.
I have a sort-of-scarf to keep me occupied for those moments when I just need to do a little knit, it's just straightforward garter stitch with a multicoloured yarn. My next project, however, is going to be a requested hat for Sister Dearest. I showed her the needle case and she liked the embroidered pocket, plain stocking stitch in a DK wool/cotton blend. It is very nice to the touch. I asked about colours and she said she wanted charcoal, to go with her long winter coat - which is also charcoal, knee length, very suitable for work or funerals, you know the thing. But she also said she wanted a bobble on it. In Brain Of Mary, "charcoal", "smart coat", "winter" and "hat" go together fine, but with a bobble? Personally, I would have thought a hat with a bobble should be done in funky, fun, bright colours to contrast with the austerity of the long, dark coat. Still, mine is not to reason why with someone like her. So, if anyone has a simple pattern for a single-colour bobble hat using DK yarn, then do flag me.
Secondly, the DLA debacle.
Today's post arrived and there was still nothing from the DWP, so I phoned up to ask what is going on.
A friendly lady named Linda went off to check, and then came back and told me that:
- A "written statement of reasons" was definitely sent in yesterday's post and so should really be with me tomorrow or Monday at the latest.
- The "Evidence", the bundle of information used to make the decision to not award DLA, arrived in their department on 11th June, to be photocopied and so on and a copy sent to me. There's no note of it having been sent on my file at this point.
- The "Evidence" will be sent separately from the "written statement of reasons".
I have no idea why it should take fourteen days to print off a copy of the reasons used to make a decision that, at the time of my request (by which I mean the time they interpreted my request correctly) was only fourteen days old. I mean, it's not like the reasons should have gone into a long-term storage vault or needed translating from Aramaic. The reasons were available on the computer on 7th June, the day I phoned. They even started trying to read the reasons out to me over the phone until I managed to explain that I did not have the capacity to take it in, remember it, or write it out as they dictated, and that therefore I needed a written version to actually look at. I can't imagine it's unusual for their clients to have difficulty dealing with important stuff over the phone.
Oh well. At least the Reasons are on the way, and at least I'm pessimistic enough to have made my own photocopy of my form before I sent it to them so I at least have one thing to refer to as I refute the Reasons.
I think once this crap has finally arrived and been dealt with, the next order of business will be a letter of complaint - not about the award or non-award of DLA, but about the barriers imposed by the system.
My sewing is not the neatest in the world, but I would describe it as "passable". I don't look at the finished product and think "dear god, the Littlun has snuck in during the night and tried to finish it off for me" so it's all okay.
The Fair Isle pocket looks rubbish, the tension is crappy so at one edge of the pocket the green Vs are too big and on the other edge they're too tiny. But at least I now know that doing Fair Isle drives me bonkers and doesn't look good on completion, so I can avoid it from here on in.
The beaded pocket, on the other hand, looks lovely. I'm quite proud of that. Plus, I'm proud of the sheer acreage and variety of knitting that I have actually accomplished. If you'd told me when I started, back in March, that I would be able to do that by June, I would have laughed at you.
I have a sort-of-scarf to keep me occupied for those moments when I just need to do a little knit, it's just straightforward garter stitch with a multicoloured yarn. My next project, however, is going to be a requested hat for Sister Dearest. I showed her the needle case and she liked the embroidered pocket, plain stocking stitch in a DK wool/cotton blend. It is very nice to the touch. I asked about colours and she said she wanted charcoal, to go with her long winter coat - which is also charcoal, knee length, very suitable for work or funerals, you know the thing. But she also said she wanted a bobble on it. In Brain Of Mary, "charcoal", "smart coat", "winter" and "hat" go together fine, but with a bobble? Personally, I would have thought a hat with a bobble should be done in funky, fun, bright colours to contrast with the austerity of the long, dark coat. Still, mine is not to reason why with someone like her. So, if anyone has a simple pattern for a single-colour bobble hat using DK yarn, then do flag me.
Secondly, the DLA debacle.
Today's post arrived and there was still nothing from the DWP, so I phoned up to ask what is going on.
A friendly lady named Linda went off to check, and then came back and told me that:
- A "written statement of reasons" was definitely sent in yesterday's post and so should really be with me tomorrow or Monday at the latest.
- The "Evidence", the bundle of information used to make the decision to not award DLA, arrived in their department on 11th June, to be photocopied and so on and a copy sent to me. There's no note of it having been sent on my file at this point.
- The "Evidence" will be sent separately from the "written statement of reasons".
I have no idea why it should take fourteen days to print off a copy of the reasons used to make a decision that, at the time of my request (by which I mean the time they interpreted my request correctly) was only fourteen days old. I mean, it's not like the reasons should have gone into a long-term storage vault or needed translating from Aramaic. The reasons were available on the computer on 7th June, the day I phoned. They even started trying to read the reasons out to me over the phone until I managed to explain that I did not have the capacity to take it in, remember it, or write it out as they dictated, and that therefore I needed a written version to actually look at. I can't imagine it's unusual for their clients to have difficulty dealing with important stuff over the phone.
Oh well. At least the Reasons are on the way, and at least I'm pessimistic enough to have made my own photocopy of my form before I sent it to them so I at least have one thing to refer to as I refute the Reasons.
I think once this crap has finally arrived and been dealt with, the next order of business will be a letter of complaint - not about the award or non-award of DLA, but about the barriers imposed by the system.
Wednesday, June 20, 2007
Waiting
According to my records...
On the 24th May I was turned down for DLA.
On the 2nd June (a Saturday) I received the letter telling me this.
On the 4th June, (Monday) my mother on my behalf asked for a reconsideration and for us to be sent copies of the reasons and Evidence used to turn down my application.
On the 6th June, the wrong forms arrived.
On the 7th June, I rang up to query this. I was told to ignore the wrong forms and assured the reasons and Evidence would be with me in 10-14 days.
On the 16th June (a Saturday), I recieved a letter confirming that I was up for reconsideration, but with no mention of the reasons and Evidence. I phoned and was told that my request for this documentation was being processed.
Today is Wednesday the 20th June. Depending on how you look at it, it's been 13-16 days since I requested the documentation relating to my claim. If it isn't here by Friday, then I have to ring them up again and attempt to be assertive. I'm not looking forward to that.
So, I'm waiting. I've done my best to clear the decks of all other claims on my time and energy, I've made sure I have plenty of food (a combination of microwave meals, pre-prepared saladyveg, fruit, juice and smoothies for healthy vits, and junk comfort food) but now I'm just tensed. I know that as soon as the paperwork arrives, I have to get working on it, and I know it's important.
It's exactly like the feeling you get before an exam, which I suppose it effectively is. Except, when I was at school and college, and I had an exam coming up, I knew when exactly it would be. I knew that on this day at this time, I would be required to walk into the exam hall and force my brain as hard as it would go for two or three hours, after which, it would all be over. So my tension was generally reserved for the four or five hours leading up to Exam Time, and maybe an hour afterwards winding back down. Which was fine. But with this, I don't know when the exam starts, and I feel like I'm not prepared for it, and instead of it being over by lunchtime it's going to be several days of sustained effort, plus, you know, ILL, with the headaches and muscle pain and nausea and whatnot.
I keep trying to sleep - I'm shattered even by my standards - but I can't, because I'm all tensed and my mind won't stop working on what they might say is a reason and how I should best argue against it.
To cap it off, today is Little Sister's birthday. I was sunshine this morning and I'm going to go and be sunshine this evening for dinner as well, and even her friends will agree that my sister is an exhausting person to spend time with, but luckily, while I'm in this kind of state, I'm not really registering what people say to me so the torrent of words should hopefully just wash right over my head (Sister Dearest, if you're reading this, you know I don't mean it nastily, but you also know it's true). On the plus side, I will be getting a really nice, home-cooked, fresh-ingredients meal, without any of the prep or clearing up, since my parents simply won't let me. I do feel guilty about it, but I'd be lying if I said it wasn't a nice treat.
Sorry about the grammar and punctuation in this post (nod to Dr Crippen. I know it's all over the place, but I can't make it fixed any better right now.
On the 24th May I was turned down for DLA.
On the 2nd June (a Saturday) I received the letter telling me this.
On the 4th June, (Monday) my mother on my behalf asked for a reconsideration and for us to be sent copies of the reasons and Evidence used to turn down my application.
On the 6th June, the wrong forms arrived.
On the 7th June, I rang up to query this. I was told to ignore the wrong forms and assured the reasons and Evidence would be with me in 10-14 days.
On the 16th June (a Saturday), I recieved a letter confirming that I was up for reconsideration, but with no mention of the reasons and Evidence. I phoned and was told that my request for this documentation was being processed.
Today is Wednesday the 20th June. Depending on how you look at it, it's been 13-16 days since I requested the documentation relating to my claim. If it isn't here by Friday, then I have to ring them up again and attempt to be assertive. I'm not looking forward to that.
So, I'm waiting. I've done my best to clear the decks of all other claims on my time and energy, I've made sure I have plenty of food (a combination of microwave meals, pre-prepared saladyveg, fruit, juice and smoothies for healthy vits, and junk comfort food) but now I'm just tensed. I know that as soon as the paperwork arrives, I have to get working on it, and I know it's important.
It's exactly like the feeling you get before an exam, which I suppose it effectively is. Except, when I was at school and college, and I had an exam coming up, I knew when exactly it would be. I knew that on this day at this time, I would be required to walk into the exam hall and force my brain as hard as it would go for two or three hours, after which, it would all be over. So my tension was generally reserved for the four or five hours leading up to Exam Time, and maybe an hour afterwards winding back down. Which was fine. But with this, I don't know when the exam starts, and I feel like I'm not prepared for it, and instead of it being over by lunchtime it's going to be several days of sustained effort, plus, you know, ILL, with the headaches and muscle pain and nausea and whatnot.
I keep trying to sleep - I'm shattered even by my standards - but I can't, because I'm all tensed and my mind won't stop working on what they might say is a reason and how I should best argue against it.
To cap it off, today is Little Sister's birthday. I was sunshine this morning and I'm going to go and be sunshine this evening for dinner as well, and even her friends will agree that my sister is an exhausting person to spend time with, but luckily, while I'm in this kind of state, I'm not really registering what people say to me so the torrent of words should hopefully just wash right over my head (Sister Dearest, if you're reading this, you know I don't mean it nastily, but you also know it's true). On the plus side, I will be getting a really nice, home-cooked, fresh-ingredients meal, without any of the prep or clearing up, since my parents simply won't let me. I do feel guilty about it, but I'd be lying if I said it wasn't a nice treat.
Sorry about the grammar and punctuation in this post (nod to Dr Crippen. I know it's all over the place, but I can't make it fixed any better right now.
Sunday, June 17, 2007
Nearly finished
All the knitting is now done for the knitted knitting needle case. My favourite yarn to knit with was the dark green Rowan wool cotton. The pink Rowan cotton glace, on the other hand, was horrible stuff that made my hands feel funny. I'm still undecided on the dark red "kid classic" - it's nice, but it's all too easy to accidentally poke the needle through the actual strand of yarn rather than the stitch. That's probably just a practice thing though.
The cabled pocket was the one that gave me the biggest sense of achievement. The beaded one was fun, once I'd found some appropriate beads. The stripes weren't so enjoyable, although it wouldn't have been as bad if the pocket had been more than nine stitches across - it felt like all I was doing was changing wool. On which note, it should not surprise anyone that I hated the Fair Isle pocket (pink with green dots, in the middle) with a fiery fiery vengeance and hope to get away with doing as little of that as possible in the future.
The cluttered nature of the photo is because my flat is very small. I have a bedroom, a bathroom, and a living room with a kitchenette counter. The needle case is 25inches square. Even on the tidiest of days, I do not have 25inches square of floor space in the bedroom or the bathroom, and it was pushing it to make space in the living room.
I was pleased to find that my iron still works - I haven't ironed anything since I got ill. I am very impressed that I did not burn myself or mess up the knitting with it. The inner and outer panels of the needle case fitted together nicely, which reassures me that I did it right - even though in the picture on the pattern it looks more rectangle than square. I've sewn the two panels together neatly and it looks good. Now it's just a matter of sewing on the pockets. I'm humming and hawing about whether I should stitch the pockets on using the colours used for each of them - could get tricky on the stripy pocket mind - or if I should use the remainder of the pale blue yarn.
Next project - little sister wants a hat. Unfortunately I had to put up with a certain amount of rubbish from her earlier today and am feeling less than inclined to put time and effort into such a thing. But, I have to knit something. I already feel strange not working on this...
Oh, and to whomsoever of my readers it may apply, happy father's day.
Edited 21.35 to add tags.
The cabled pocket was the one that gave me the biggest sense of achievement. The beaded one was fun, once I'd found some appropriate beads. The stripes weren't so enjoyable, although it wouldn't have been as bad if the pocket had been more than nine stitches across - it felt like all I was doing was changing wool. On which note, it should not surprise anyone that I hated the Fair Isle pocket (pink with green dots, in the middle) with a fiery fiery vengeance and hope to get away with doing as little of that as possible in the future.
The cluttered nature of the photo is because my flat is very small. I have a bedroom, a bathroom, and a living room with a kitchenette counter. The needle case is 25inches square. Even on the tidiest of days, I do not have 25inches square of floor space in the bedroom or the bathroom, and it was pushing it to make space in the living room.
I was pleased to find that my iron still works - I haven't ironed anything since I got ill. I am very impressed that I did not burn myself or mess up the knitting with it. The inner and outer panels of the needle case fitted together nicely, which reassures me that I did it right - even though in the picture on the pattern it looks more rectangle than square. I've sewn the two panels together neatly and it looks good. Now it's just a matter of sewing on the pockets. I'm humming and hawing about whether I should stitch the pockets on using the colours used for each of them - could get tricky on the stripy pocket mind - or if I should use the remainder of the pale blue yarn.
Next project - little sister wants a hat. Unfortunately I had to put up with a certain amount of rubbish from her earlier today and am feeling less than inclined to put time and effort into such a thing. But, I have to knit something. I already feel strange not working on this...
Oh, and to whomsoever of my readers it may apply, happy father's day.
Edited 21.35 to add tags.
Monday, June 11, 2007
Progress
My stress has wound down several more notches, thanks to fantastic support from Steve, and from my family and friends here, and also (I realise this sounds cheesy) because of the blogger support.
A commenter on an earlier post linked me to Benefits And Work, and a quick Paypal of £16.50 later, there was an absolute wealth of useful information at my fingertips.
As well as all this information and support, I believe I've established the difference between a Reconsideration and an Appeal. I'm not doing an Appeal. An Appeal is a scary thing full of solicitors and panels and hearings and tribunals, yeeech. I'm doing a Reconsideration, which as I understand it, just means that a different Decision Maker will look at my case in 28 days time from when I phoned them. I can use those 28 days to submit any additional, supplemental or new evidence that I would like a Decision Maker to look at. Or not. But either way, it doesn't have to involve comprehension of legalese on my part.
I've had a good think about what evidence I would like to include that they don't already have. Here's my list:
- A step-by-step refutation of their reasons for the non-award decision ("you said [this], in fact the case is [this], as backed up by [evidence].") although I can't make a start on this until I get their written list of reasons, which could take another week from now.
- The report from the specialist ME/CFS clinic at the hospital. It's over a year old, but it includes such handy phrases as "Mary has classic chronic fatigue syndrome" as well as information about my pain and activity levels. I already have the patient copy of this document.
- A proper written explanation of the issues with the locum doing the GP's report, including a reminder that I flagged this issue at the time and well before they made the decision to not award DLA, or in other words, that I'm not making up issues because I'm all upset by their decision.
- A written statement from Steve regarding my care and mobility needs from his perspective as someone who sometimes looks after me. Mum already did one (albeit a short one), as part of my original renewal forms. I'd ask Pip too, but he's got a lot on his plate at the moment.
- The forms and GP's Report (by my actual proper GP) for my successful Incapacity Benefit renewal back in February. I have requested to be sent these, although I am warned it may take "a few days" as they have "probably gone to the storage facility already".
I also rang my GP's surgery and asked if I could have a copy of my notes for the last three years. Unfortunately the receptionist said I had to ask my GP, or in real terms, I had to ask the infamous Dr M. It was agreed that Dr M would call me back, which she did, when I was in the middle of my nap and in no position to deal with anything let alone start insisting. She told me that my notes would only be relevant if I went to an Appeal and my solicitor made a formal request for them. I do not have it in me to fight her. So I do not have access to my medical records. However, I'm toying with appropriate wording to explain in my Reconsideration covering letter that I believe there may be additional supporting evidence for my claim in my medical notes, but have been unable to gain access to them. Not sure.
Hopefully, this will be enough.
In better news...
I've finished the cable pocket on the knitted knitting needle case. Only one real hiccup, that was when I started looking at the wrong place on the page and knitted the final few rows that should have been on the Fair Isle pocket onto the end of the cable pocket. But it was easy enough to undo. Oh, and if anyone knows of an insanely simple explanation of Fair Isle online, please do recommend it in the comments.
My houseplant is still thriving. At this rate, it will see me through moving to Steve's (still no date set so don't get excited), which will be the third house-move it's done with me.
For dinner I had salad and a lasagne. Asda own-brand straightforward lasagne (in other words, not Extra Value or Low Fat or any other faff), microwaveable, £1, and it tastes bloody lovely. I would go so far as to say it's the nicest microwave lasagne I've had, and trust me, I know what I'm talking about. I shall have to buy more.
And now I'm off to bed, and I have ALL the bed to myself. Swings and roundabouts...
A commenter on an earlier post linked me to Benefits And Work, and a quick Paypal of £16.50 later, there was an absolute wealth of useful information at my fingertips.
As well as all this information and support, I believe I've established the difference between a Reconsideration and an Appeal. I'm not doing an Appeal. An Appeal is a scary thing full of solicitors and panels and hearings and tribunals, yeeech. I'm doing a Reconsideration, which as I understand it, just means that a different Decision Maker will look at my case in 28 days time from when I phoned them. I can use those 28 days to submit any additional, supplemental or new evidence that I would like a Decision Maker to look at. Or not. But either way, it doesn't have to involve comprehension of legalese on my part.
I've had a good think about what evidence I would like to include that they don't already have. Here's my list:
- A step-by-step refutation of their reasons for the non-award decision ("you said [this], in fact the case is [this], as backed up by [evidence].") although I can't make a start on this until I get their written list of reasons, which could take another week from now.
- The report from the specialist ME/CFS clinic at the hospital. It's over a year old, but it includes such handy phrases as "Mary has classic chronic fatigue syndrome" as well as information about my pain and activity levels. I already have the patient copy of this document.
- A proper written explanation of the issues with the locum doing the GP's report, including a reminder that I flagged this issue at the time and well before they made the decision to not award DLA, or in other words, that I'm not making up issues because I'm all upset by their decision.
- A written statement from Steve regarding my care and mobility needs from his perspective as someone who sometimes looks after me. Mum already did one (albeit a short one), as part of my original renewal forms. I'd ask Pip too, but he's got a lot on his plate at the moment.
- The forms and GP's Report (by my actual proper GP) for my successful Incapacity Benefit renewal back in February. I have requested to be sent these, although I am warned it may take "a few days" as they have "probably gone to the storage facility already".
I also rang my GP's surgery and asked if I could have a copy of my notes for the last three years. Unfortunately the receptionist said I had to ask my GP, or in real terms, I had to ask the infamous Dr M. It was agreed that Dr M would call me back, which she did, when I was in the middle of my nap and in no position to deal with anything let alone start insisting. She told me that my notes would only be relevant if I went to an Appeal and my solicitor made a formal request for them. I do not have it in me to fight her. So I do not have access to my medical records. However, I'm toying with appropriate wording to explain in my Reconsideration covering letter that I believe there may be additional supporting evidence for my claim in my medical notes, but have been unable to gain access to them. Not sure.
Hopefully, this will be enough.
In better news...
I've finished the cable pocket on the knitted knitting needle case. Only one real hiccup, that was when I started looking at the wrong place on the page and knitted the final few rows that should have been on the Fair Isle pocket onto the end of the cable pocket. But it was easy enough to undo. Oh, and if anyone knows of an insanely simple explanation of Fair Isle online, please do recommend it in the comments.
My houseplant is still thriving. At this rate, it will see me through moving to Steve's (still no date set so don't get excited), which will be the third house-move it's done with me.
For dinner I had salad and a lasagne. Asda own-brand straightforward lasagne (in other words, not Extra Value or Low Fat or any other faff), microwaveable, £1, and it tastes bloody lovely. I would go so far as to say it's the nicest microwave lasagne I've had, and trust me, I know what I'm talking about. I shall have to buy more.
And now I'm off to bed, and I have ALL the bed to myself. Swings and roundabouts...
Thursday, June 07, 2007
... and they're off!
Ladies and gentlemen, the screwups have commenced!
The DLA unit have sent me a set of irrelevant forms - the ones for if you are reporting a change in your condition that may affect your DLA entitlement.
They maintain that these forms would not have been sent if they hadn't been very specifically asked for. They did not have an answer to "why would we have asked for the "my condition has changed" forms, when the whole point of calling you was to outline that my condition has not changed at all?" other than to insist the incompetence (or as I tactfully phrased it "a misunderstanding, a bit of crossed wires") cannot possibly have been at their end.
If there is some poor sod out there who, on Monday, requested forms DLA454 to report a change in circumstances, and has instead received something along the lines of "so you'd like us to reconsider our decision..." then I'm really sorry. I don't have it in me to concurrently run an dispute about their decision regarding my DLA award, AND a complaint.
They told me on the phone that I have four weeks in which to put together as much additional information as possible for the reconsideration. However, the Evidence they are sending (all the evidence used to make their decision and the reasons for this decision) will not be with me for another 10-14 days. So if the third of these four weeks is a Bad Week for me, I'm screwed. There is no possibility of an extension.
I've been let down by DIAL as well. Possibly they're very busy, possibly they remember me as being all capable and independent from the work days, maybe they just don't like me - but the manager phoned me back and pretty much brushed me off with "you can deal with that yourself, because it's not a full-on appeal, just a reconsideration". Oh. Sorry to have bothered them. Obviously I phoned them for the fun of it, rather than because I'm at a stage of "please, please, somebody help me, I really cannot deal with this on my own, I have no resources, I don't know what's happening, and I don't know what to do..."
With this in mind I have sent money to the folk at Benefits and Work (with thanks to an anonymous commenter on an earlier post for flagging them) so that I can look at some of their handy online resources including titles like "Appealing against a Disability Living Allowance decision".
I wish there was some way that I could just, I don't know, sell a kidney or something and have someone take over all this Aaargh-ness.
On the happier side:
I've completed the inner panel of the knitting needle case and have started on the pockets.
One of the pockets requires beads, and I've just won the perfect ones from eBay.
I also won a new top from eBay (little bit of shopping therapy a couple of days ago). The top, plus my beads, plus the postage for each, totals about £5. Bargain.
Being back home has meant popping in to see Pip and the Littlun for a cuppa. Littlun gave me kisses and cuddles. Spontaneous ones as well, not the "go give (visitor) cuddles!" kind (which always make me feel uncomfortable - kids don't HAVE to cuddle me, you know?). I also got offered a slice of apple, which was yummy, and about a third of a chocolate biscuit, but it was a bit... slimy, so I turned it down in the politest manner possible. Still, he's learning about sharing.
The DLA unit have sent me a set of irrelevant forms - the ones for if you are reporting a change in your condition that may affect your DLA entitlement.
They maintain that these forms would not have been sent if they hadn't been very specifically asked for. They did not have an answer to "why would we have asked for the "my condition has changed" forms, when the whole point of calling you was to outline that my condition has not changed at all?" other than to insist the incompetence (or as I tactfully phrased it "a misunderstanding, a bit of crossed wires") cannot possibly have been at their end.
If there is some poor sod out there who, on Monday, requested forms DLA454 to report a change in circumstances, and has instead received something along the lines of "so you'd like us to reconsider our decision..." then I'm really sorry. I don't have it in me to concurrently run an dispute about their decision regarding my DLA award, AND a complaint.
They told me on the phone that I have four weeks in which to put together as much additional information as possible for the reconsideration. However, the Evidence they are sending (all the evidence used to make their decision and the reasons for this decision) will not be with me for another 10-14 days. So if the third of these four weeks is a Bad Week for me, I'm screwed. There is no possibility of an extension.
I've been let down by DIAL as well. Possibly they're very busy, possibly they remember me as being all capable and independent from the work days, maybe they just don't like me - but the manager phoned me back and pretty much brushed me off with "you can deal with that yourself, because it's not a full-on appeal, just a reconsideration". Oh. Sorry to have bothered them. Obviously I phoned them for the fun of it, rather than because I'm at a stage of "please, please, somebody help me, I really cannot deal with this on my own, I have no resources, I don't know what's happening, and I don't know what to do..."
With this in mind I have sent money to the folk at Benefits and Work (with thanks to an anonymous commenter on an earlier post for flagging them) so that I can look at some of their handy online resources including titles like "Appealing against a Disability Living Allowance decision".
I wish there was some way that I could just, I don't know, sell a kidney or something and have someone take over all this Aaargh-ness.
On the happier side:
I've completed the inner panel of the knitting needle case and have started on the pockets.
One of the pockets requires beads, and I've just won the perfect ones from eBay.
I also won a new top from eBay (little bit of shopping therapy a couple of days ago). The top, plus my beads, plus the postage for each, totals about £5. Bargain.
Being back home has meant popping in to see Pip and the Littlun for a cuppa. Littlun gave me kisses and cuddles. Spontaneous ones as well, not the "go give (visitor) cuddles!" kind (which always make me feel uncomfortable - kids don't HAVE to cuddle me, you know?). I also got offered a slice of apple, which was yummy, and about a third of a chocolate biscuit, but it was a bit... slimy, so I turned it down in the politest manner possible. Still, he's learning about sharing.
Monday, June 04, 2007
Stop the clock
The 28 days to respond are no longer ticking, and I have some space in which to get myself packed up, back home, and mentally prepared for the clock starting again.
The commenters here have been amazingly helpful and supportive, in both a friendly and a practical sense. Thank you all ever so much. Gawd bless the internets!
Even with all that support, I don't think I have the capacity to organise my own appeal. If I did, let's face it, I would go and get a job. Luckily, the job I used to have means I knew exactly who to call - DIAL. Locally, DIAL is an officeful of volunteers who have done Welfare Rights training and a whole bunch of other stuff. Their remit is to help disabled people apply for various benefits and resources, assist in appeals, and signpost any other relevant organisations. I think there are two paid full-time employees there, one of whom is the manager. I confess that during the course of my employment I met people who seemed to think the most important part of their job was getting enough Lottery funding to extend their salaries for another year or so, and maybe to employ some friends and family as well... however this is an accusation that cannot be levelled at DIAL. They were quite possibly the most dedicated professionals I met.
So, at 9:30 this morning (Monday) I phoned them. Shock number one was that the phone was answered by one of my ex-clients. After a slight tangle of emotion (happy to hear a friendly voice who recognised me, proud he's doing so well in the placement, embarassment at having to admit "no, I'm not back at work, I'm calling as a client", confusion as my whole brain/speech/style/whatever unconsciously slipped back into Job Mode as if I was calling in a work capacity, and a touch of stress about the actual DLA business) I explained the problem.
Within a few minutes I had been told clearly and concisely what the next thing to do was. I was to call the DLA, and ask for a reconsideration. They would probably offer an over-the-phone reconsideration which I must reject, because for DIAL to help me they need everything written down. I must also ask to be sent written reasons for their decision and copies of their evidence used to make that decision. Then I should call back.
There's no landline phone at Steve's and calling any government unit first thing on a Monday morning is asking to hear the ENTIRE loop of hold music several times over - if you don't start with a headache, you'll have one by the time you get through to someone. Not something to be done from a mobile. So I called mum, who knows all my details, has the letter and so on, and offered her flowers and chocolates and Pretty Things if she'd call them for me. She agreed - being the lovely mum that she is - and did.
Less than ten minutes later, she called back. I honestly thought something was wrong. I was expecting her to say "sorry, I can't spend an hour on hold to the DLA unit because my leg's been ripped off and I really must go to hospital". I think I actually answered my mobile with "what's the matter?" But no, by some unknown amazingness she'd got almost straight through.
They did try to get her to agree to an over-the-phone reconsideration, but she explained that we were getting help from an independent organisation and needed stuff in writing. So now, I'm down for a reconsideration and they are going to send all the stuff.
I called DIAL back and they said that what happens now is that my case will be passed to another "decision maker". IF the turn-down was just because of the original decision maker having a grumpy day or trying to hit a rejection target or whatever, then we should be okay, and I should get a letter awarding me DLA at whatever level. However, IF the turn-down was on the basis of that locum's half-assed GP's Report, it could be a bit more of a problem. The clock re-starts at the date of the next decision-containing letter. Upon receiving it, I have to call DIAL immediately and arrange an appointment to start an appeal.
I've decided to try and forget about it and enjoy the next couple of days, go to the Victoria for another cream tea, and go to the knitting group here on Tuesday again, and then on Wednesday get packed and ready to go home. I figure that even with the most unlikely dazzling efficiency, they won't have a whole packet of evidence and a fresh decision ready until Tuesday, and then it will take a day or two to get to the flat, and then there's no way I'll get a same-day appointment at DIAL.
I still keep feeling nauseous though.
The commenters here have been amazingly helpful and supportive, in both a friendly and a practical sense. Thank you all ever so much. Gawd bless the internets!
Even with all that support, I don't think I have the capacity to organise my own appeal. If I did, let's face it, I would go and get a job. Luckily, the job I used to have means I knew exactly who to call - DIAL. Locally, DIAL is an officeful of volunteers who have done Welfare Rights training and a whole bunch of other stuff. Their remit is to help disabled people apply for various benefits and resources, assist in appeals, and signpost any other relevant organisations. I think there are two paid full-time employees there, one of whom is the manager. I confess that during the course of my employment I met people who seemed to think the most important part of their job was getting enough Lottery funding to extend their salaries for another year or so, and maybe to employ some friends and family as well... however this is an accusation that cannot be levelled at DIAL. They were quite possibly the most dedicated professionals I met.
So, at 9:30 this morning (Monday) I phoned them. Shock number one was that the phone was answered by one of my ex-clients. After a slight tangle of emotion (happy to hear a friendly voice who recognised me, proud he's doing so well in the placement, embarassment at having to admit "no, I'm not back at work, I'm calling as a client", confusion as my whole brain/speech/style/whatever unconsciously slipped back into Job Mode as if I was calling in a work capacity, and a touch of stress about the actual DLA business) I explained the problem.
Within a few minutes I had been told clearly and concisely what the next thing to do was. I was to call the DLA, and ask for a reconsideration. They would probably offer an over-the-phone reconsideration which I must reject, because for DIAL to help me they need everything written down. I must also ask to be sent written reasons for their decision and copies of their evidence used to make that decision. Then I should call back.
There's no landline phone at Steve's and calling any government unit first thing on a Monday morning is asking to hear the ENTIRE loop of hold music several times over - if you don't start with a headache, you'll have one by the time you get through to someone. Not something to be done from a mobile. So I called mum, who knows all my details, has the letter and so on, and offered her flowers and chocolates and Pretty Things if she'd call them for me. She agreed - being the lovely mum that she is - and did.
Less than ten minutes later, she called back. I honestly thought something was wrong. I was expecting her to say "sorry, I can't spend an hour on hold to the DLA unit because my leg's been ripped off and I really must go to hospital". I think I actually answered my mobile with "what's the matter?" But no, by some unknown amazingness she'd got almost straight through.
They did try to get her to agree to an over-the-phone reconsideration, but she explained that we were getting help from an independent organisation and needed stuff in writing. So now, I'm down for a reconsideration and they are going to send all the stuff.
I called DIAL back and they said that what happens now is that my case will be passed to another "decision maker". IF the turn-down was just because of the original decision maker having a grumpy day or trying to hit a rejection target or whatever, then we should be okay, and I should get a letter awarding me DLA at whatever level. However, IF the turn-down was on the basis of that locum's half-assed GP's Report, it could be a bit more of a problem. The clock re-starts at the date of the next decision-containing letter. Upon receiving it, I have to call DIAL immediately and arrange an appointment to start an appeal.
I've decided to try and forget about it and enjoy the next couple of days, go to the Victoria for another cream tea, and go to the knitting group here on Tuesday again, and then on Wednesday get packed and ready to go home. I figure that even with the most unlikely dazzling efficiency, they won't have a whole packet of evidence and a fresh decision ready until Tuesday, and then it will take a day or two to get to the flat, and then there's no way I'll get a same-day appointment at DIAL.
I still keep feeling nauseous though.
Saturday, June 02, 2007
Cured?
This morning I got a phone call from my mum. In a wonderful piece of timing with me being on holiday (so I don't have my file) AND it being a Saturday (so all helplines etc are closed), a letter has turned up from the Department of Work and Pensions.
I have been turned down for Disability Living Allowance.
Not reduced, but turned down flat.
Option 1: I have magically been cured. I'll go out and get a 40-hour-a-week job now, and start living my social life to the max too. I have to go shopping now, to get some new trainers for the marathons I'll be running this summer.
Option 2: The effects the illness has on my life are the same as ever, but the discrepancies between what I wrote on my forms about my condition and day-to-day life, and what the woman standing in for "my GP" wrote on her forms, has led them to think that one or the other of us is telling porkies. Obviously people with medical degrees don't ever make mistakes or get things wrong, therefore my statements are the ones which are wrong, and I need no help whatsoever with my care or mobility needs.
I have just under a month (28 days starting from the date their letter was written) to try and sort this mess out. Steve was going to be taking me home next week anyway, but now it will be nearer the beginning of the week than the end.
Plan:
1. Draft some letters to the DWP. I may be able to find some templates online to help with this once I've got my head together.
2. Contact the ME/CFS clinic at the hospital who gave me the definite diagnosis of "yes, you have classic ME" and ask if they can reassess me.
3. Contact DIAL and see if they can help me.
3(b). If DIAL can't help, call Pip and arrange for him to help me lay siege to the Citizen's Advice Bureau (unfortunately the local CAB have broken email and don't answer the phone due to terminal understaffing, so you have to go in person and a wait of four hours or more should be prepared for).
4. Go through all my accounts and carefully plan my expenditure for the next year, eg exactly how much will be needed for rent, bills, etc.
5. Learn how to knit socks.
Other thoughts:
At least I've already done this once. When I lost my job, and the lovely income that went with it, I managed to trim things down until my outgoings were essential bills (rent, council tax, electric, water, landline phone line rental) plus £15 a week for everything else - from food to transport to phone calls/internet to toothpaste to Christmas presents. It wasn't much of a lifestyle, granted, and involved a lot of Lidl's pasta, but I definitely survived and I damn well will again.
Plus, I have the long-term incapacity benefit award (as supported by Dr W...) so at least there is a fixed income I can rely on, rather than trying to live out of savings.
Forecast: Sunny spells, but with intermittent tears and mood swings for a while. Warning! Warning! Flooding may occur.
I have been turned down for Disability Living Allowance.
Not reduced, but turned down flat.
Option 1: I have magically been cured. I'll go out and get a 40-hour-a-week job now, and start living my social life to the max too. I have to go shopping now, to get some new trainers for the marathons I'll be running this summer.
Option 2: The effects the illness has on my life are the same as ever, but the discrepancies between what I wrote on my forms about my condition and day-to-day life, and what the woman standing in for "my GP" wrote on her forms, has led them to think that one or the other of us is telling porkies. Obviously people with medical degrees don't ever make mistakes or get things wrong, therefore my statements are the ones which are wrong, and I need no help whatsoever with my care or mobility needs.
I have just under a month (28 days starting from the date their letter was written) to try and sort this mess out. Steve was going to be taking me home next week anyway, but now it will be nearer the beginning of the week than the end.
Plan:
1. Draft some letters to the DWP. I may be able to find some templates online to help with this once I've got my head together.
2. Contact the ME/CFS clinic at the hospital who gave me the definite diagnosis of "yes, you have classic ME" and ask if they can reassess me.
3. Contact DIAL and see if they can help me.
3(b). If DIAL can't help, call Pip and arrange for him to help me lay siege to the Citizen's Advice Bureau (unfortunately the local CAB have broken email and don't answer the phone due to terminal understaffing, so you have to go in person and a wait of four hours or more should be prepared for).
4. Go through all my accounts and carefully plan my expenditure for the next year, eg exactly how much will be needed for rent, bills, etc.
5. Learn how to knit socks.
Other thoughts:
At least I've already done this once. When I lost my job, and the lovely income that went with it, I managed to trim things down until my outgoings were essential bills (rent, council tax, electric, water, landline phone line rental) plus £15 a week for everything else - from food to transport to phone calls/internet to toothpaste to Christmas presents. It wasn't much of a lifestyle, granted, and involved a lot of Lidl's pasta, but I definitely survived and I damn well will again.
Plus, I have the long-term incapacity benefit award (as supported by Dr W...) so at least there is a fixed income I can rely on, rather than trying to live out of savings.
Forecast: Sunny spells, but with intermittent tears and mood swings for a while. Warning! Warning! Flooding may occur.
Wednesday, May 30, 2007
Yarn!
Yesterday was a nice day. Steve and I went to the Victoria Coffee House on Warwick Street for tea/coffee and scones, which was as lovely as it always is. Proper loose-leaf tea in a pot, proper coffee in a cafetiere, proper fresh warm irregularly-shaped scones with butter and clotted cream and jam... mmm. Also, wireless internets. We arrived just as the lunchtime busy-ness was easing off, which was nice.
A nice, slow afternoon involved playing some Kingdom Of Loathing, in which we're all eagerly anticipating the event of NS13. I would say we're preparing for it, except it's difficult to know how to prepare - a lot of goalposts are being shifted. I play with two characters, one who ascends regularly and tries out different character classes, and one who just gets really really powerful in one class - she's been going for a year but has only just ascended for the first time. I really enjoy exploring the game, and for NS13 I'm putting aside my current gameplay style and trying to get both my characters up to a respectable level so that (hopefully) I will be able to explore all the new content with relative ease.
I apologise that the above paragraph meant nothing to non-KOL-ers.
Anyway, yesterday evening was knitting group in Leamington. It was a nice evening and at first I hoped Steve and I could go on the bike, but then it occurred to me that although I'd be okay on the way there, getting back after sitting and knitting for a couple of hours would be beyond my capabilities. It was a shame because I think Steve has been kind of itching to get on the bike for several days now. Still, he's gone out on it today for a big-long-ride which will probably make him a happy bunny.
I have a really nice time at the knitting group. Everyone's so friendly and welcoming. Carie helped me pick out some colours for the pockets on my knitting needle case, which was really good of her because I think left to my own devices I would have given up and just ordered the exact colours suggested on the example photo on the pattern, even though I don't much like them (too much pink, not to mention a hurts-the-eyes green). Carie is really good at colours and likes choosingyarn study insulation. I've never been overwhelmed by my creative abilities, half the reason I chose knitting was because the instructions are right there, written down by someone else. But to be able to mull it over with the help of a friend was really enjoyable.
Click the picture to see the photo of the yarns we chose on my flickr stream, with notes.
Today I'm pretty shattered, after not just yesterday evening but also a rather energetic night during which I beat Steve up three times. I was dreaming about being chased and, unusually for me, being caught and having to fight off the vampire/grizzly bear/marshmallow blob/killer ants/etc. I've told him to just shove me back. He says he did. Oh well. I'll probably get used to the idea that I don't have the whole bed to myself just as soon as he takes me back home and I have a whole bed to myself again.
edited 14:20 to add tags
A nice, slow afternoon involved playing some Kingdom Of Loathing, in which we're all eagerly anticipating the event of NS13. I would say we're preparing for it, except it's difficult to know how to prepare - a lot of goalposts are being shifted. I play with two characters, one who ascends regularly and tries out different character classes, and one who just gets really really powerful in one class - she's been going for a year but has only just ascended for the first time. I really enjoy exploring the game, and for NS13 I'm putting aside my current gameplay style and trying to get both my characters up to a respectable level so that (hopefully) I will be able to explore all the new content with relative ease.
I apologise that the above paragraph meant nothing to non-KOL-ers.
Anyway, yesterday evening was knitting group in Leamington. It was a nice evening and at first I hoped Steve and I could go on the bike, but then it occurred to me that although I'd be okay on the way there, getting back after sitting and knitting for a couple of hours would be beyond my capabilities. It was a shame because I think Steve has been kind of itching to get on the bike for several days now. Still, he's gone out on it today for a big-long-ride which will probably make him a happy bunny.
I have a really nice time at the knitting group. Everyone's so friendly and welcoming. Carie helped me pick out some colours for the pockets on my knitting needle case, which was really good of her because I think left to my own devices I would have given up and just ordered the exact colours suggested on the example photo on the pattern, even though I don't much like them (too much pink, not to mention a hurts-the-eyes green). Carie is really good at colours and likes choosing
Click the picture to see the photo of the yarns we chose on my flickr stream, with notes.
Today I'm pretty shattered, after not just yesterday evening but also a rather energetic night during which I beat Steve up three times. I was dreaming about being chased and, unusually for me, being caught and having to fight off the vampire/grizzly bear/marshmallow blob/killer ants/etc. I've told him to just shove me back. He says he did. Oh well. I'll probably get used to the idea that I don't have the whole bed to myself just as soon as he takes me back home and I have a whole bed to myself again.
edited 14:20 to add tags
Monday, May 28, 2007
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.
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.
Friday, May 18, 2007
Internet Addiction?
On May 9th I mentioned a number of half-written posts I had and asked which ones I should make into full posts. The answer seemed to be "all of them, why not?" so here's the first. I'm not entirely happy with it, but it's the most complete one of the lot, and I'm not having a great time for concentration at the moment so bah, it'll do.
While aimlessly reading through the BBC Magazine Monitor's "100 things we didn't know last year", I came across this article.
Apparently more than one in eight adults in the (US) study were internet addicts. Signs of addiction include:
- Finding it hard to stay away from the Internet for several days at a time
- Often staying online longer than intended
- Having seen a need "at some point" to cut down on Internet use
- Attempting to conceal Internet use
- Using the Internet to escape problems or "relieve negative mood"
- Relationships suffering from excessive Internet use
Lists like this cover most forms of addiction. Just read the list above substituting "alcohol" or "heroin" or "gambling" or "bingeing on chocolate" for "Internet".
For the record, I freely admit to finding it hard to stay away from the internet for more than a day or two, and I come online to "relieve negative mood" - it's something I enjoy doing, in the same way as I enjoy a nice bath, or a cuppa with a friend. I'm "online" most of the time, most days, but while the computer and msn and so on are "online" I'm quite probably curled up on the sofa snoozing, or filling out a form, or tidying up around the flat. I do my computer-stuff in many short bursts rather than one long stint. I've never tried to conceal my usage, and I'm pretty certain my relationships haven't suffered - quite the opposite! I'm hazy on the idea of "non-essential use". If I order groceries online because it's easier for me than going to a shop, is that essential or not? If Steve plays an online game for half an hour to relax after a crappy day at work, is his relaxation essential? Is reading the news essential? Is contact with long-distance relatives essential?
Even if we get an idea of what is essential use and what is non-essential, but reasonable use, we then still end up on the same old cycle of trying to figure out at which point the use is defined as an addiction. Where's the line that makes it a problem, or possibly even a pathology?
It may partly depend on what the activity is. I know many people who like to read books. They wouldn't want to spend several days without reading a book. They become immersed in a book at bedtime and then realise it's 4am and they've been reading much longer than intended. They have realised they have more books than shelf-space and decided to get rid of a few. They read books to "escape from reality" or because it relaxes them, or cheers them up. But no one would dream of telling them they are addicts, or that they have a problem, or that they must empty their houses of books and from now on they can only read road signs. You just don't do that with Reading Books. Is it reasonable to do it with Using the Internet? Writing diaries is another one. If Samuel Pepys was alive today and writing his memoirs in daily blog form, would he be castigated as an internet addict with "compulsive behaviour issues" as these researchers put it?
It also depends to what extent the activity is taken. For instance, it is normal, even desirable behaviour to keep one's home clean. I also know people who like to take pride in keeping their houses neat and clean. Rather than "oh no, housework, it's got to be done but I wish I didn't have to do it," they actually quite enjoy tidying a room, putting things in the proper places, polishing the surfaces, fluffing the cushions and looking at the results with a sense of deep satisfaction. Then there are those who feel distinctly uncomfortable in an untidy room - people who come to your house for a cup of tea and can't help themselves from lining up your remote controls in order of size on the coffee table, or even say "I'll just rinse my cup out," and then start washing up your breakfast things from that morning. And then there are those who compulsively and constantly deep-clean everything. A friend of mine got burns on her legs at someone's house because she hadn't been warned to wipe the bleach off the toilet seat before sitting down - the householder in question reapplied the bleach several times a day. Few people would argue a statement that this last example shows signs of a problem. But at which point along the spectrum does the "problem" status apply?
I think perhaps the line between a hobby or interest, and an addiction, is when it has a real impact on other people. I'm having trouble imagining someone shoplifting their food and mugging people so that they can pay their line rental or get another couple of gig of bandwidth... but I can, for instance, imagine a child with a full nappy and an empty bottle sticking their fingers in sockets while their parent is at the other end of the house having "just one more f5", so maybe internet addiction isn't such an outlandish concept.
Hopefully someone will prod me before I get too sucked in.
While aimlessly reading through the BBC Magazine Monitor's "100 things we didn't know last year", I came across this article.
Apparently more than one in eight adults in the (US) study were internet addicts. Signs of addiction include:
- Finding it hard to stay away from the Internet for several days at a time
- Often staying online longer than intended
- Having seen a need "at some point" to cut down on Internet use
- Attempting to conceal Internet use
- Using the Internet to escape problems or "relieve negative mood"
- Relationships suffering from excessive Internet use
Lists like this cover most forms of addiction. Just read the list above substituting "alcohol" or "heroin" or "gambling" or "bingeing on chocolate" for "Internet".
For the record, I freely admit to finding it hard to stay away from the internet for more than a day or two, and I come online to "relieve negative mood" - it's something I enjoy doing, in the same way as I enjoy a nice bath, or a cuppa with a friend. I'm "online" most of the time, most days, but while the computer and msn and so on are "online" I'm quite probably curled up on the sofa snoozing, or filling out a form, or tidying up around the flat. I do my computer-stuff in many short bursts rather than one long stint. I've never tried to conceal my usage, and I'm pretty certain my relationships haven't suffered - quite the opposite! I'm hazy on the idea of "non-essential use". If I order groceries online because it's easier for me than going to a shop, is that essential or not? If Steve plays an online game for half an hour to relax after a crappy day at work, is his relaxation essential? Is reading the news essential? Is contact with long-distance relatives essential?
Even if we get an idea of what is essential use and what is non-essential, but reasonable use, we then still end up on the same old cycle of trying to figure out at which point the use is defined as an addiction. Where's the line that makes it a problem, or possibly even a pathology?
It may partly depend on what the activity is. I know many people who like to read books. They wouldn't want to spend several days without reading a book. They become immersed in a book at bedtime and then realise it's 4am and they've been reading much longer than intended. They have realised they have more books than shelf-space and decided to get rid of a few. They read books to "escape from reality" or because it relaxes them, or cheers them up. But no one would dream of telling them they are addicts, or that they have a problem, or that they must empty their houses of books and from now on they can only read road signs. You just don't do that with Reading Books. Is it reasonable to do it with Using the Internet? Writing diaries is another one. If Samuel Pepys was alive today and writing his memoirs in daily blog form, would he be castigated as an internet addict with "compulsive behaviour issues" as these researchers put it?
It also depends to what extent the activity is taken. For instance, it is normal, even desirable behaviour to keep one's home clean. I also know people who like to take pride in keeping their houses neat and clean. Rather than "oh no, housework, it's got to be done but I wish I didn't have to do it," they actually quite enjoy tidying a room, putting things in the proper places, polishing the surfaces, fluffing the cushions and looking at the results with a sense of deep satisfaction. Then there are those who feel distinctly uncomfortable in an untidy room - people who come to your house for a cup of tea and can't help themselves from lining up your remote controls in order of size on the coffee table, or even say "I'll just rinse my cup out," and then start washing up your breakfast things from that morning. And then there are those who compulsively and constantly deep-clean everything. A friend of mine got burns on her legs at someone's house because she hadn't been warned to wipe the bleach off the toilet seat before sitting down - the householder in question reapplied the bleach several times a day. Few people would argue a statement that this last example shows signs of a problem. But at which point along the spectrum does the "problem" status apply?
I think perhaps the line between a hobby or interest, and an addiction, is when it has a real impact on other people. I'm having trouble imagining someone shoplifting their food and mugging people so that they can pay their line rental or get another couple of gig of bandwidth... but I can, for instance, imagine a child with a full nappy and an empty bottle sticking their fingers in sockets while their parent is at the other end of the house having "just one more f5", so maybe internet addiction isn't such an outlandish concept.
Hopefully someone will prod me before I get too sucked in.
Thursday, May 17, 2007
Wednesday, May 09, 2007
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.
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.
Tuesday, May 08, 2007
The weather seems to have given me a bit of a knock so I haven't been about too much. I've been spending far more time than is healthy lying down, wide awake, feverish and full of painkillers, with my mind wandering.
The chain of thought started with Terry Pratchett's Hogfather, which was dramatised on SkyOne last Christmas and which I recently bought on DVD. From there we went to the Coca-Cola Christmas adverts.
I also started thinking about the type of adverts that take a well-known song, and then put their own lyrics on it, like this Weetabix advert.
The next stage was how in school, up until I was about 13, we had to sing hymns in assembly each day, as well as any amount of carol concerts. Lots of songs we sang had "alternative" lyrics. "While sheperds washed their socks by night", and "we three kings of orient are trying to light a rubber cigar", "good king Wenceslas looked out, on the Feast of Stephen, a snowball hit him on the snout and made it all uneven" and hundreds of others I'm sure you can remember.
And from THERE, final leap, I fell into a sort of half-sleep full of people in a church. A priest at the front burbling a sermon, congregation variously dozing, or fidgeting, or looking disapprovingly at those who were dozing or fidgeting. The bit where the priest says something and the congregation answer in a zombie monotone.
"May the Lord be with you"
"A n d a l s o w i t h y o u"
"Let us lift up our hearts"
"w e l i f t t h e m u p t o t h e L o r d"
(Catholic primary school, this crud is etched on my brain)
The organ plays a chord, people cough and shuffle to their feet. Upon which they launch into This Bloody Frosties Advert. Complete with jumping up and down.
My mind scares me sometimes.
Oh, and as this post has far too many YouTube links in it already, I may as well stick in another one. Ladies and gentlemen, I give you... Nintendo Opera.
The chain of thought started with Terry Pratchett's Hogfather, which was dramatised on SkyOne last Christmas and which I recently bought on DVD. From there we went to the Coca-Cola Christmas adverts.
I also started thinking about the type of adverts that take a well-known song, and then put their own lyrics on it, like this Weetabix advert.
The next stage was how in school, up until I was about 13, we had to sing hymns in assembly each day, as well as any amount of carol concerts. Lots of songs we sang had "alternative" lyrics. "While sheperds washed their socks by night", and "we three kings of orient are trying to light a rubber cigar", "good king Wenceslas looked out, on the Feast of Stephen, a snowball hit him on the snout and made it all uneven" and hundreds of others I'm sure you can remember.
And from THERE, final leap, I fell into a sort of half-sleep full of people in a church. A priest at the front burbling a sermon, congregation variously dozing, or fidgeting, or looking disapprovingly at those who were dozing or fidgeting. The bit where the priest says something and the congregation answer in a zombie monotone.
"May the Lord be with you"
"A n d a l s o w i t h y o u"
"Let us lift up our hearts"
"w e l i f t t h e m u p t o t h e L o r d"
(Catholic primary school, this crud is etched on my brain)
The organ plays a chord, people cough and shuffle to their feet. Upon which they launch into This Bloody Frosties Advert. Complete with jumping up and down.
My mind scares me sometimes.
Oh, and as this post has far too many YouTube links in it already, I may as well stick in another one. Ladies and gentlemen, I give you... Nintendo Opera.
Friday, May 04, 2007
Dagnabit
Two days!! Two blasted days of doing only the bare minimum - convenience food, minimal washing-up efforts, damn near militarised regular breaks and naps, resistance of an overwhelming compulsion to go shopping and the hell with the consequences...
Why? Well, Pip, the Littlun, and myself are all plan-free today, no doctor's appointments or playgroup or family commitments or anything. So earlier in the week, we thought, let's have a day out again, like last summer's trip to Banham Zoo.
Places we're considering include Pettitts Animal Adventure Park, or Fritton Lake, or perhaps Colchester Zoo. Of course, a day out like that requires us all to be well-rested. I have to be prepared to spend several hours solid "up and doing things", but it's poor Pip who really gets it in the shorts - pushing me in the wheelchair while carrying Littlun in the backback/chasing after Littlun on foot, plus all the driving while Littlun and I are likely to be zonked out asleep on the drive back, and possibly the drive there too.
I phoned Pip late yesterday afternoon and we agreed that the most likely plan was Pettitts. But I've just got up, bright and early, and it is GREY out there.
It's only 8am, so I'm hoping that the BBC weather is right and it's going to be mostly sunny with just a bit of (white) cloud, but seriously, Mary's Window Weather Report does not look promising.
On the bright side (well, the drizzly side), we do have Adventure Island nearby, and it's not school holidays so we should be alright there.
Oh, and I had the weirdest dreams last night... I was running around all different types of places (the flat, a stately home, a shop, a restaurant, all indoors though) painting "I am" statements on the wall with my Big Pot Of Paint and an enormous brush. You know, "I am happy" or "I am brunette" or "I am Steve's girlfriend", that sort of thing.
Update 8pm
We ended up with the master plan of going to the East Point Pavillion which houses a Tourist Information Centre, a small restaurant, and a big indoor play area. Pip took the Littlun into the play area while I collected up an assortment of leaflets for family days out - basically everything for the area that wasn't a stately home, museum, or other obviously non-two-year-old-friendly venue.
I couldn't really participate a great deal, unfortunately. The Pavillion has three floors. The ground floor contains the Tourist Information, the restaurant, the kitchens, and the loos, as well as the baby soft-play area and a couple of ball-pools where the big slides finish. Then the entirety of the first AND second floors are more of the main playground. Pip got a good workout - Littlun is at that awkward size where he's definitely too big for the baby area, but too small to manage some of the larger obstacles, and too adventurous to stay within eyesight of the adult seating, but too young for Pip to be able to just leave him to it completely while we sit on the ground floor with a cuppa. Still, the place was practically empty, and the three of us had a wonderful fight in the ball-pool. After about an hour Littlun was quite worn out, so we went and got some Unlucky Fried Chicken for lunch and then back to their house for a nap.
Not quite the day out we had hoped for, but a good day nevertheless. And now I'm shattered.
Why? Well, Pip, the Littlun, and myself are all plan-free today, no doctor's appointments or playgroup or family commitments or anything. So earlier in the week, we thought, let's have a day out again, like last summer's trip to Banham Zoo.
Places we're considering include Pettitts Animal Adventure Park, or Fritton Lake, or perhaps Colchester Zoo. Of course, a day out like that requires us all to be well-rested. I have to be prepared to spend several hours solid "up and doing things", but it's poor Pip who really gets it in the shorts - pushing me in the wheelchair while carrying Littlun in the backback/chasing after Littlun on foot, plus all the driving while Littlun and I are likely to be zonked out asleep on the drive back, and possibly the drive there too.
I phoned Pip late yesterday afternoon and we agreed that the most likely plan was Pettitts. But I've just got up, bright and early, and it is GREY out there.
It's only 8am, so I'm hoping that the BBC weather is right and it's going to be mostly sunny with just a bit of (white) cloud, but seriously, Mary's Window Weather Report does not look promising.
On the bright side (well, the drizzly side), we do have Adventure Island nearby, and it's not school holidays so we should be alright there.
Oh, and I had the weirdest dreams last night... I was running around all different types of places (the flat, a stately home, a shop, a restaurant, all indoors though) painting "I am" statements on the wall with my Big Pot Of Paint and an enormous brush. You know, "I am happy" or "I am brunette" or "I am Steve's girlfriend", that sort of thing.
Update 8pm
We ended up with the master plan of going to the East Point Pavillion which houses a Tourist Information Centre, a small restaurant, and a big indoor play area. Pip took the Littlun into the play area while I collected up an assortment of leaflets for family days out - basically everything for the area that wasn't a stately home, museum, or other obviously non-two-year-old-friendly venue.
I couldn't really participate a great deal, unfortunately. The Pavillion has three floors. The ground floor contains the Tourist Information, the restaurant, the kitchens, and the loos, as well as the baby soft-play area and a couple of ball-pools where the big slides finish. Then the entirety of the first AND second floors are more of the main playground. Pip got a good workout - Littlun is at that awkward size where he's definitely too big for the baby area, but too small to manage some of the larger obstacles, and too adventurous to stay within eyesight of the adult seating, but too young for Pip to be able to just leave him to it completely while we sit on the ground floor with a cuppa. Still, the place was practically empty, and the three of us had a wonderful fight in the ball-pool. After about an hour Littlun was quite worn out, so we went and got some Unlucky Fried Chicken for lunch and then back to their house for a nap.
Not quite the day out we had hoped for, but a good day nevertheless. And now I'm shattered.
Tuesday, May 01, 2007
New Doctor - a follow up
A while ago I mentioned my concerns about how I am renewing my Disability Living Allowance (DLA) and they want a report from my GP, but my GP is on maternity leave, so the GP's report will be filled in by a locum.
Unhappily, it seems that my fears were not completely unfounded.
Today was the day that Dr M (the locum) had asked me to come in for a double appointment so that she could fill in her part of the form. I went into her office, exchanged greetings, asked how she was, and sat down, just like always. She scrolled through my notes on the computer for a brief moment - perhaps five seconds by the clock - and then scrawled across the first box, the one asking what my illness is... "Anxiety and depression".
Sure, I sometimes get a bit anxious. I sometimes get a bit depressed. But not clinically so. I was given a low dose of antidepressant in the early stages of my illness. I did feel, and tell my GP I was feeling, both anxious and depressed about the new limitations on my way of life. She told me she was prescribing the antidepressant to cushion the blow of losing my job/hobbies/lifestyle, and because "sometimes it helps with ME. It doesn't hurt to try." In time I came to terms with things, and I've now come off the antidepressants, best part of a year ago, perfectly successfully - an opinion my real GP, Dr W, shares. If she felt I required treatment for anxiety or depression, she would refer me for it and I would attend it. I have absolute confidence in Dr W to do stuff like that.
I try not to swear on this blog, but with all that in mind, where the shuddering FUCK does this new girl get off, casually writing an inaccurate, or at best, incomplete diagnosis across a form that has a big impact on my life?
Dr M then cheerfully moved on to the next part of the form, that asks about any specialists I see. Asking me, but looking at the computer notes, she saw that I went to the specialist ME/CFS clinic at one of the local hospitals, and that there is a report from Dr Terry Mitchell, an expert in the field. Only when she saw that Dr Mitchell himself had seen me, assessed me, and confirmed in writing and in so many words that I *do* have ME/CFS and *don't* have depression, did she go back and add "CFS" to the box on the form asking for my diagnoses. However, it's in small writing, tucked underneath the large central "anxiety and depression", which hasn't been crossed out.
From then on, the consultation felt like some kind of horrible parody. She spoke too quickly, confused the hell out of me, and I couldn't get my words in the right order or quick enough to stop her. She was looking at the form muttering "washing, feeding, [unintelligible], getting dressed, no, you don't have any problems with those..." and I only just managed to say in time "yes I do!" - she looked like she was going to cross through the box. A little later, she stated "I can't imagine you have any trouble being aware of danger," and I told her to tell that to the friends who keep having to pull me back from the road because I'm concentrating so hard on walking that I forget to pay attention to traffic. It was all going too fast, I didn't get a chance to describe any of my symptoms properly or adequately explain any of the problems I have.
I'm fairly sure my mobility is part of that form. It was Dr W who first suggested to me that I should get a wheelchair and a mobility scooter - Dr M, however, doesn't even know I have them or the difference they make to my life, and she certainly didn't ask me anything about what walking is like for me.
I'm fairly sure that equipment I use is part of that form. Dr W has spent time discussing with me all sorts of tips and equipment for remembering medication and managing stuff, but Dr M has assumed I'm automagically fine with it all.
I'm fairly sure that my care needs are part of that form. Dr W knows the extent of care and support I get from my family and friends, because she's my family GP. Dr M was filling out the form murmuring things like "you're pretty much independent then, yes..."
Dr W lets me bloody well finish a sentence. Dr M starts writing my answers in before I've opened my mouth.
After just under ten minutes of this gobsmacking whirlwind of misapprehensions (oh, looks like we didn't need a double appointment after all), Dr M squiggled her signature on the form and clipped it back together. God knows what she's written on it. It should get faxed to the DWP late today or some time tomorrow (so I'll call them in a week or so to make sure it's definitely been recieved, as they're notorious for "losing" documents). Then she made it entirely, bluntly clear that the consultation was over, and even seemed impatient with me struggling to stand - although I may have imagined that, as I was feeling pretty overwhelmed by then.
As I waited outside the surgery for a taxi home, the headmuddle resolved itself first into worry (oh no, her report will be completely different to what I've said on my forms because I didn't explain myself properly) and then into anger (godammit, her report will be completely different from the actual truth because she wouldn't listen to me or read the notes properly).
By the time I got home, I'd got the anger into annoyedness (gah, her report will be significantly different to what Dr W would have written) and worked out a plan. I've called the DWP, explained the situation, and asked what we could do. The call-taker asked if I wanted to request that they ignore the report, but I said no (because I understand that she's attaching Dr Mitchell's report from the CFS clinic, and that IS worth a read to anyone assessing me). But she put a note on my file, and read it back to me to confirm it, to the effect that I have "raised concerns" about my GP's report being from a locum, rather than the GP who manages my illness, and that I do not feel the locum is fully informed or understanding of my condition.
I'm knackered, so sorry that this wasn't my best ever post. I'm also a bit concerned that if my application is turned down on the basis of Dr M's assumptions, I don't know how I'll manage to see through an appeal. I really could have done without this. I don't think I'm the illest person on earth and I have no desire to play the system, but I would like the doctor I see to listen to me, and I want to receive the benefits I am reasonably entitled to.
Unhappily, it seems that my fears were not completely unfounded.
Today was the day that Dr M (the locum) had asked me to come in for a double appointment so that she could fill in her part of the form. I went into her office, exchanged greetings, asked how she was, and sat down, just like always. She scrolled through my notes on the computer for a brief moment - perhaps five seconds by the clock - and then scrawled across the first box, the one asking what my illness is... "Anxiety and depression".
Sure, I sometimes get a bit anxious. I sometimes get a bit depressed. But not clinically so. I was given a low dose of antidepressant in the early stages of my illness. I did feel, and tell my GP I was feeling, both anxious and depressed about the new limitations on my way of life. She told me she was prescribing the antidepressant to cushion the blow of losing my job/hobbies/lifestyle, and because "sometimes it helps with ME. It doesn't hurt to try." In time I came to terms with things, and I've now come off the antidepressants, best part of a year ago, perfectly successfully - an opinion my real GP, Dr W, shares. If she felt I required treatment for anxiety or depression, she would refer me for it and I would attend it. I have absolute confidence in Dr W to do stuff like that.
I try not to swear on this blog, but with all that in mind, where the shuddering FUCK does this new girl get off, casually writing an inaccurate, or at best, incomplete diagnosis across a form that has a big impact on my life?
Dr M then cheerfully moved on to the next part of the form, that asks about any specialists I see. Asking me, but looking at the computer notes, she saw that I went to the specialist ME/CFS clinic at one of the local hospitals, and that there is a report from Dr Terry Mitchell, an expert in the field. Only when she saw that Dr Mitchell himself had seen me, assessed me, and confirmed in writing and in so many words that I *do* have ME/CFS and *don't* have depression, did she go back and add "CFS" to the box on the form asking for my diagnoses. However, it's in small writing, tucked underneath the large central "anxiety and depression", which hasn't been crossed out.
From then on, the consultation felt like some kind of horrible parody. She spoke too quickly, confused the hell out of me, and I couldn't get my words in the right order or quick enough to stop her. She was looking at the form muttering "washing, feeding, [unintelligible], getting dressed, no, you don't have any problems with those..." and I only just managed to say in time "yes I do!" - she looked like she was going to cross through the box. A little later, she stated "I can't imagine you have any trouble being aware of danger," and I told her to tell that to the friends who keep having to pull me back from the road because I'm concentrating so hard on walking that I forget to pay attention to traffic. It was all going too fast, I didn't get a chance to describe any of my symptoms properly or adequately explain any of the problems I have.
I'm fairly sure my mobility is part of that form. It was Dr W who first suggested to me that I should get a wheelchair and a mobility scooter - Dr M, however, doesn't even know I have them or the difference they make to my life, and she certainly didn't ask me anything about what walking is like for me.
I'm fairly sure that equipment I use is part of that form. Dr W has spent time discussing with me all sorts of tips and equipment for remembering medication and managing stuff, but Dr M has assumed I'm automagically fine with it all.
I'm fairly sure that my care needs are part of that form. Dr W knows the extent of care and support I get from my family and friends, because she's my family GP. Dr M was filling out the form murmuring things like "you're pretty much independent then, yes..."
Dr W lets me bloody well finish a sentence. Dr M starts writing my answers in before I've opened my mouth.
After just under ten minutes of this gobsmacking whirlwind of misapprehensions (oh, looks like we didn't need a double appointment after all), Dr M squiggled her signature on the form and clipped it back together. God knows what she's written on it. It should get faxed to the DWP late today or some time tomorrow (so I'll call them in a week or so to make sure it's definitely been recieved, as they're notorious for "losing" documents). Then she made it entirely, bluntly clear that the consultation was over, and even seemed impatient with me struggling to stand - although I may have imagined that, as I was feeling pretty overwhelmed by then.
As I waited outside the surgery for a taxi home, the headmuddle resolved itself first into worry (oh no, her report will be completely different to what I've said on my forms because I didn't explain myself properly) and then into anger (godammit, her report will be completely different from the actual truth because she wouldn't listen to me or read the notes properly).
By the time I got home, I'd got the anger into annoyedness (gah, her report will be significantly different to what Dr W would have written) and worked out a plan. I've called the DWP, explained the situation, and asked what we could do. The call-taker asked if I wanted to request that they ignore the report, but I said no (because I understand that she's attaching Dr Mitchell's report from the CFS clinic, and that IS worth a read to anyone assessing me). But she put a note on my file, and read it back to me to confirm it, to the effect that I have "raised concerns" about my GP's report being from a locum, rather than the GP who manages my illness, and that I do not feel the locum is fully informed or understanding of my condition.
I'm knackered, so sorry that this wasn't my best ever post. I'm also a bit concerned that if my application is turned down on the basis of Dr M's assumptions, I don't know how I'll manage to see through an appeal. I really could have done without this. I don't think I'm the illest person on earth and I have no desire to play the system, but I would like the doctor I see to listen to me, and I want to receive the benefits I am reasonably entitled to.
Blogging Against Disablism Day
Today is Blogging Against Disablism Day. I wanted to write something for it, unfortunately I just haven't been able to. Even when my mind's been clear, I've been seriously lacking in ideas.
But, if you go and have a look, there are posts coming in about all sorts of disability issues.
I also really, really recommend that if you only click one link today it is this one, a post from last year by Lady Bracknell's Editor. It's not very long but explains something very important.
Subscribe to:
Posts (Atom)
