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Well, i received my tribunal papers a few weeks ago, and today i have sent in my remaining evidence to the Tribunals Service. I have sent a letter from my GP and also a letter from the CFS/ME specialist, who i saw a couple of weeks ago.

The tribunal itself won’t be until the new year as they have a bit of a back log at the moment, so in one way it is nice not to have to think about it and to have plenty of time to get the evidence in etc. but at the same time i would just like it to be done with, whatever the outcome. This process began last Easter-time and it is now nearly Chistmas! I should be happy to think of all the back payment i will get, but as i doubt that i fit the narrow criteria, particularly for higher rate mobility, i don’t think i will be awarded that, however difficult my mobility problems are.

So anyway, the letters i have sent are the only really supportive evidence that i have, so let’s hope that they are detailed enough… both are quite brief so i will summarise the points made below:

Specialist Letter:

I am writing in support of this patient’s appeal…

Her diagnosis is clearly CFS (ME) and there has been a steady deterioration in her symptoms since i last saw her with increasing headaches, neck pain, fatigue and marked reduction in her physical exercise capacity.

She has considerable problems on standing… and has been diagnosed with Positional Orthostatic Tachycardia Syndrome… gives very marked postural symptoms. This is part of autonomic dysfunction, which underlies CFS.

She is not able to undertake activities of daily living without significant help from her partner. Her physical activity is limited to 5-10 minutes maximum. She has become more significantly depressed because of her disability.

…her disability is severe and progressive and has not shown any significant improvement with previous therapeutic input along the lines suggested by the NICE guidelines…

After the letter he wrote for the insurance company i was a bit disappointed with this one as it was less detailed and specific about what i can and can’t do, and this one for DLA seems more important to me, but it is quite strongly worded so it may be ok.

The letter from my GP is not great, but it is better than the very briefly and incorrectly filled form she initially did. I had to go back and tell her is was not good enough – a bit nerve-wracking!

So now her new letter says i cannot cook a meal for myself, cannot walk more than 150m* without discomfort/rest, that my condition is severe and that i have a certain amount of energy to work with each day so any help that i get makes a big difference in my ability to manage my energy and condition.

*this was the distance used in my rejection letter as the reason i did not qualify for higher rate mobility, but it seems the actual distance they use to judge can be 30m, 50m or who knows what next week, so her saying this may work against me, as i cannot always leave the house to walk anywhere at all…

We will see how these letters affect my appeal, i hope they are detailed/strong enough and help to avoid me having to talk for ages at the appeal about the nitty gritty of what i can and can’t do as it is very difficult to be consistent when there are no definite answers with such a condition as this, and also to concentrate and talk for any length of time, especially under stress.

I will not be having any representation either… but hopefully a benefits adviser will be coming to help me prepare for it once i get the date through, which may help me feel better about it and know what to expect.

Anyway i am trying not to think about it right now and leave it til the new year when it will actually happen… i don’t think there is anything more i can do, just need to see how it goes on the day…

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After several days of feeling really awful and being mostly in bed (when not trying to take the dog out and wondering, literally, if i can make it home despite being only a few hundred yards from my house) i went today to get my hair cut! I was ready to cancel yesterday (and shave my hair off as i rarely feel up to going to get it cut) but knew i only needed to be taken there and sit through it and thought i would see how i felt today. I rested and mostly lay in bed until 2pm and then felt able to give it a go 🙂

The other thing i did was i popped into Boots, which is next door to the hairdressers and got some wrapping paper to wrap my partner’s birthday and anniversary presents in – i was beginning to get a bit stressed about it as could not see when i would be well enough to get some, had left it too late to order online (knew i forgot something!) and didn’t want to ask her to get her own! They did not have a great selection but i am happy. Still have not managed to get cards for her, but think i will have to make them if i can…

I do miss being able to go shopping, but usually it doesn’t bother me hugely unless i need clothes, but it really annoys me not to be able to choose presents for people… the internet is great and helps a lot but it is nice to see what you are buying sometimes as well!

Anyway, i didn’t feel as bad as i thought in the hairdressers (kept my eyes open and chatted quite a bit -although the music was a bit sharp) and i feel a sense of achievement. Plus my hair looks one hundred per cent better than before!

If the sun would just come out so i can sit in the backyard a bit over the weekend i will be doubly happy!

(yes i am blocking the fact that i need to write my letter requesting my DLA appeal and have had not even half the energy required to engage with that task in the last week… let’s hope i have the energy to do it this week before the deadline… shame i will have to use my better moments on that odious task…)

Well, bad news is that the benefits service who could have helped me have refused to take my case on for appeal… so if i want to carry on to appeal i have to go it alone… I am not sure what they would have done for me, but they would have come with me and helped me prepare for it, and possibly “represented” me in some way. Anyway going alone (with my partner) is a bit daunting. The reason they are not taking me on is that I do not have good medical support/evidence, and as my case stands it does not look very strong, as without medical backup they (DWP) have every reason not to believe me it seems. The service have limited resources so can’t take on someone in this situation. I have an appointment with my specialist in october so i am hoping that he will be very supportive so that i have a basis on which to continue to appeal (and to challenge what has already been said about me), but i am having real second thoughts about continuing. It is stressing me out! I know that if i don’t i will always be thinking, “what if i had carried on…” but i am left doubting how strong a case i have and my chances of success after this latest development, and it is a lot to put myself through for nothing. I suppose i will just carry on until i have seen the specialist and give up if he is not overly enthusiastic/supportive/articulate but i am so sick of all this now. I could rant on and on about it but i really can’t be bothered to waste my breath today!

Today was a day of such contrasts… i spent most of the day’s energy writing an email to my benefit’s adviser person about the DLA medical evidence they used to reject my claim, see below. No need to read it all but it gives a good idea of how much work/stress is involved in the Appeal, if i actually get that far…. and i got fairly stressed thinking about it all… on the other hand i have spent some lovely time in the back yard with my partner, the sky was so blue, it was so warm and sunny, i lay on my back and watched all different birds (starlings, gulls, pigeons, rooks, an unidentified possible bird of prey, swifts, a butterfly and some bees), several strange planes and a few familiar package holiday planes, a helium balloon (which floated about for ages from a tiny glinting speck to a large blob and from side to side), my plants were looking lovely and cobwebs shimmered in the heat. We played cards a bit and listened to some music and it made everything seem better.

So here follows the email, names edited…

…There are substantial differences between what the EMP had recorded about how i was/appeared and said to what actually was the case. I will briefly summarise these as it may be useful in justifying if we have a viable case. I will take  a note of obviously incorrect statements with me to Dr S too so that he will hopefully overrule them and assert that they are incorrect… no word from him as to an appointment date yet.
 
The report from my GP is not good, she has not even answered all the questions but maybe i should just wait and see if Dr S will be thorough and supportive, rather than go back for another couple of sentences from her? She has not even answered the question as to the severity, which the EMP describes as mild, which is ridiculous… I don’t know what to do about my doctor’s part.
 
OK:
Firstly, i did not get to answer all the questions fully as he did keep interrupting and moving on to new questions, so it is not a full picture, despite the meeting taking an hour, most time was taken up with repetition, him recording info on computer v slowly…
 
The summary in section 1, under Chronic Fatigue Syndrome J’s notes show that i talked about sensory overload as a main symptom (sensitivity to light, noise, movement in visual field). This affects me a lot and can affect my ability to sit in room with noise (TV/music) and often i have to lie in darkened room (i think i mentioned that to the EMP). Even when not severe this symptom can lead to me finding a taxi ride very draining and stressful, dealing with the momentum, radio, listening to chatty driver, etc and these symptoms do prevent me from going out and contribute to physical stress & fatigue/feeling unwell.
 
In medication i explained to him that i take Boots Tension headache tablets with codeine and muscle relaxant and at the time he said “paracetamol?” and i corrected him, saying that they did contain paracetamol but also codeine etc and he has recorded it as simply paracetamol… J’s notes also show here that i talked about my sharp nerve pains in my forehead that flare up sometimes, where i had Tri-geminal Neuralgia. he has not noted this anywhere.
 
on page 3 – client’s reported impairments and functional restrictions incl response to current treatment
J’s notes show that i stated that walking is VERY draining and that i need to lie down before and afterwards. He also asked me if i have good days and i said that they have greatly reduced as time has gone on, this is not in report.
He report states that “current treatment for CFS slightly improves the condition” I have no idea what this refers to as i am not receiving treatment. He asked me at one point if the painkillers i take work and i said to some extent, but this does not improve my functional abilities, I still have all the major symptoms/problems!
 
In the summary of typical day: again he had omitted that i have to spend a large proportion of the day in bed resting between tasks in order to get through the day without major flare up and effects in following days. He again asked me about my typical day but before i could answer he just asked lots more questions about my day rather than allowing me to explain. I became dizzy and very lightheaded while trying to answer these questions and asked for a pause at this point, as i was finding it hard to assert myself, be listened to, project my voice and felt quite weak and distressed. I explained that i do not get up, get washed, dressed, etc all at once and that i do the bare minimum (pj’s and teeth) before breakfast, then may deal with washing (bath etc) later if i feel well enough, which i often do not, or it takes a huge proportion of daily energy. After trying to explain about hair washing and being cut off within the first few words i started to cry, and although j’s notes do not show this i explained to him that i was finding it very hard to explain clearly as it was talking a huge amount of effort to speak and every time he interrupts is making it even harder as he did not seem to let me speak/listen to me. He did apologise but from this point on i was feeling very ill and was visibly shaking through the exertion/effort of being there. I also explained to him that my back was causing me a lot of discomfort /pain and i kept having to sit forward/shift position as the chair was not supportive.
 
(On page 5 it says that i sat still through 45 minutes… this is very incorrect.)

Still on p3 it says i can use a computer without difficulty – i did not say this, i said that i can use it for limited time, that i get blurred vision and limited concentration when reading, and that i can get sensory overload symptoms when using it. I also said here that i often just sit quietly, and am not always able to be doing something. None of this was recorded by EMP.
 
It also says i do not fall. I explained that i sink down to the ground, or have to sit/lie down on the ground but do not fall suddenly or in a way that could hurt me (a controlled fall)
 
Page 5:
hands not shaking (my body was so i think my hands probably were a bit as well – my legs were trembling through most of interview)
does not look tired – felt absolutely awful and cannot believe that i looked ok
 
mental state:
here is says i sat still – i was not sitting still at all – but this seems to be the mental assessment and my reasons were physical.
 
Spoke at normal rate/volume – i was having great difficulty speaking and getting through the questions. it was using a huge effort/amount of energy and making me lightheaded.
 
page 7:
no neck tenderness – very precursory feel about neck was done – i always have neck tenderness and can feel “grating” when i turn my head.
 
page 11: sat in upright chair for 45 mins without obvious discomfort  not only was i frequently changing sitting position, often leaning forward as no support for upper back on chair, i stated more than once that i was in discomfort. he asked me straight out if my back was painful during physical exam and i said yes.
 
walked 30 m very slowly to examination room. However this was inconsistent with other available evidence
balance observed as unsteady, However this was inconsistent with other available evidence
I felt very weak and was finding it very hard to walk, particularly by the end of the visit, where J was supporting me on one side and i had stick on other side as i left the examination room. I had refused to stand for physical exam as i felt unable and was feeling very weak and dizzy by this point. What other evidence?
 
I had no difficulty understanding the customer’s speech 
I had to repeat myself and correct him over and over again and still at the end when he summarised he had recorded things wrongly that had been repeated earlier. He misheard me several times due to my lack of ability to project my voice, j had to repeat things i had said for me.
 
page 12:
physical summary completely disagree with. My condition is not mild.
Medication does not improve level of function at all.
i have more than mild disability and there is not way i could cook and care for myself on a daily basis.
 
the degree of variability described by the client is unlikely  it took me a full week to recover back to any level i consider to be “normal” for me after that examination, which i found to be so stressful and drained me of all energy reserves. My level of functioning went down so that i was basically bed-bound for most of the day, managing only to get up to use the toilet and to sit downstairs for meals. I felt very ill and found it very hard to concentrate on anything, think straight, stand or move around the house. My whole body ached and felt very heavy and cumbersome. I have very sensitive points on my scalp and tension type muscular headache for several days. I was not able to bath etc as much as i would have like to, and the couple of times i had to take the dog out i almost crawled across the road, sat on the bench opposite while she did her stuff, then crossed back over and it was a major trauma. I felt very unsteady and dizzy.
 
How can i ever prove it though? If i have been asked to go to the medical in the days after i would not have been able to go AT ALL. If i had to do everything for myself just getting through most days would be overdoing it and would result in flare-up after flare-up. This is why i think i do meet the criteria. I have no control or say in having to go to appointments etc which make me overdo it in this way. Sometimes i have a flareups due to viruses, hormonal changes etc that again i have no control over. These flareups happen regularly and are part of the condition. even when not in this emergency situation i still cannot go out much or for long, have to plan any walking or to avoid it where possible, have quiet places to rest planned etc just to make normal things possible, which largely they are not.
 
Small rant there, but unless i say, how can it be used as evidence?
 
Page 13: discomfort, pain, breathlessness on walking: they say not enough to significantly restrict my mobility… my mobility IS significantly restricted If i want to go to the shop and i know i have to take the dog out i have to combine the two tasks, and it is a very short walk… how bad do i have to be? even that short walk is a struggle. Standing to pay for something in shop is very hard and if more than one person ahead in queue i have to leave and not get the item.
 
Does the client need to halt? If i stop and rest on a bench this helps a lot but if i stand still, it is worse than walking slowly due to symptoms of orthostatic intolerance. Often i sit on bench and feel so lifeless and heavy in limbs i really struggle to get up and get home. Saying no contradicts that i told them i do need to stop often when walking.
 
Page 15 – Risk of falls
i have already told them i am at risk of falls due to dizziness and that i do HAVE to sit/lie on occasion or feel so weak that i feel faint.
 
Attention needs:
Peel/chop – i would find this very difficult on bad days when feeling weak
hot pans –  same as above
i always sit if doing any kitchen prep and do find it very draining – i do it very rarely.
take bath/shower – i cannot shower as cannot stand well. I am not always able to have a bath when needed as major effort. always lie down afterwards.
 
page 17 – communicated without difficulty during examination – not true – i directly said i was finding it hard and was visibly distressed by effort and voice was quiet.
 
If i can get something supportive out of Dr S i will carry on, but i can see your point about the appeal without more medical evidence/support. How can i demonstrate how bad things can be? The more articulate i am the more people think i am ok, but i need to be because people do not seem to get it/listen/understand.
 
I am totally exhausted now but had to write this to give you something else to go on with welfare rights people… This is really stressing me. Tried to leave it and rest but could not stop thinking about it so maybe now that i have written this i can sleep a bit. trying to rest up for wednesday but not feeling too good now!
 
Is any of this inconsistency useful for our case? Please GOD!

My application for DLA has been turned down…

It has been so much hard work. Filling in the form took 6 weeks and felt like a lot of work, i had someone to help me and even then we only got it in the day before the deadline. The first three weeks i was completely unable to even think about it or concentrate on anything like that, and just managed to write a diary for a week as supportive evidence, then the next three weeks were spent filling it in with several short meetings with my benefits adviser who wrote it all out for me. It really exhausted me especially as we pushed to get it in in time and i was not really up to working on it. I got very down as i found it completely demoralising.

Then two weeks ago i had a medical and it was a nightmare (the same week as i had to fill in my incapacity benefit form, and with a phone call on Wednesday asking me to go on Friday i then had to push on with my IB form as i know i would be unable to finish it at the weekend, as well as reading up on what to expect at the medical). I found the medical very stressful. My partner came with me thankfully, and write notes as to what was said. We had to wait half an hour (which i believe is standard for “observational purposes”), then spend a whole hour in with the doctor.

I won’t go into ALL the details but I was feeling very weak and “past it” by the time i saw the doctor, (at 2pm, and although i did lie down before we left the house I would usually have had a nap by that time, and with the extra stress of the occasion i was not feeling good) my back was hurting, i felt very light-headed and dizzy (even sitting down) and was having trouble speaking and expressing myself clearly which led to tears of frustration as the doc was so ineffectual. The doctor could not type well (2 fingers and slow) and seemed not to be able to listen and type at the same time, which meant that he asked me the same questions over and over (and over) again, constantly getting my answers wrong and even interrupted me if i responded with anything more than a yes or no answer as it seemed he could not cope with typing sentences or deal with nuanced answers, which frankly with a fluctuating condition you are going to get when you ask questions like “how far can you walk?” “Can you do x for yourself?” etc. there are not many things i can say a definite yes or no to! I felt forced into oversimplifying my answers, as i had to on the form, which makes you feel as if you are lying, but the questions are not designed for M.E… by the end of the hour I could barely stand up and made this clear (i refused to stand to do exercises and sat instead on the bench, although he then made me stand against the wall to do a sight test (did i say i can’t see?) for a minute or two…). How that medical could not have backed up what my form said i do not know…

That took a full week to get over, during which i ached literally all over, and barely made it out of the house (very short dog “walks” when essential), had head pains and generally felt as weak and as bad as i had said on my form… actually even worse, which made me not doubt myself so much (It is easy to feel guilty when i have a better day or two and i can do things i have said that i generally cannot – forgetting how bad things are 95% of the time, and i have not even been given any money yet! It is ridiculous to feel that way when i am only trying to claim something i am supposedly entitled to…). I thought, if i could do a video diary of the impact of a one hour doctor’s assessment, maybe they would get it! I slept as much as possible. I did not feel too down, just incredibly weak and drained of all energy. I did the bare minimum in terms of dog walking, personal hygiene etc… The thought of going to Scarborough for the weekend gave me something to rest for so i knew it would be worth it if i could make it.

Scarborough was great – it could not have been better – see separate post!

Then Friday i got a letter saying that i am NOT virtually unable to walk, that i CAN prepare a meal for myself etc etc. Very occasionally this is true… most of the time however it is not. Even if i do these things, the impact that having done them has on my health and my ability to manage my symptoms and how i then feel the next few days (when i would most certainly not be able to do the aforementioned things), means that i would have been much better off not having to do them. Also, been able to do something sometimes, and not knowing how much “payback” i will get is not a lot of practical use as i can’t plan to do anything as i never know when my “better” days (or is more often the case, better hour or so) will be…

Anyway i am going to appeal and hope that at the tribunal there are intelligent people who can see the limitations that I face in daily life and hopefully they will be able to see that they fit with the DLA criteria if you have half an imagination… here’s hoping… Apparently that can take months to happen so i will just have to get the correct form, send it off and then try not to think about it too much in the meantime and hope that i feel able to cope with it and the stress it will undoubtedly cause at the time.

ME/CFS Awareness

ME/CFS Awareness

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