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I have started something… check out the last two posts on my creative blog for the details… (birders welcome)!

Well, i said i would go out of the house somehow to mark my birthday, and i did. We decided Saturday was the best day for a number of factors (weather forecast, likely traffic due to Newcastle v Sunderland football game on Sunday etc), but i woke up feeling very dodgy and my partner’s assessment that i looked “a bit pale”, when i looked in the mirror, was a hilarious understatement. (Good to see those low blood pressure tablets working… NOT!). So, we crossed off the most ambitious option which was to drive to Sunderland to the National Glass Centre (best done in daylight as never been before and it was already late morning) and i got back into bed. I managed a bath in the afternoon and booked a taxi for 4.15pm, as i was determined to do something out of the ordinary. We went to the Laing Art Gallery in town (Newcastle) to quickly (It closes at 5pm!) see Tracey Emin’s Seagulls. I was happy to find them near the entrance and there was a sofa to sit on while looking at them.

I am not really a fan of hers, but i am conceiving an arty project of my own about birds (I feel it may be customary not to talk about things before you even start them, and for good reason, but hey! i like to live on the edge), which have taken on a greater significance for me recently as my illness has been more severe, so i thought in the name of research i would see what a “proper artist” was doing… We did not stay long and really there was nothing more to see than looking at the picture on the website (see link above). What really struck me was that the seagulls, all made from the same cast so pretty much identical, looked more like PIGEONS! To me the beauty of a gull is in it’s crisp edges and it’s angular elegance in the air; these were all rounded and puffy looking… and to have the same words on each one as well? It could have been more interesting to my mind, but what do i know?

So anyway, we then took a short walk to a bar as we had an hour before the restaurant opened. Firstly the only seat we could get were high bar stools which wobbled precariously and were set next to a wobbly table and i felt all “at sea” and not good at all. I do best with a seat with a supportive back, but this was a whole new level of discomfort! Luckily some people moved and we got better seats and the lights were less in my eyes there too.

Then we took another short walk to the bus stop to get a bus down the hill to the quayside. We did not have long to wait and got to the restaurant no problem. The meal was nice. It was Indian food from the Kerala region. We enjoyed the starters more than the main in the end and it was nice and quiet with only one other table occupied when we arrived, although it did fill up by the time we left. We could have got a taxi to come to the restaurant to take us home but i wanted to walk along the river just a little as it is a long time since i was there, and it is nice at night. So we walked a little bit and got a taxi home from the taxi rank.

sage-being-32

 

 

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When we got home i very quickly deteriorated and had to go and lie in bed for a while, which put a bit of a dampener on things (i walked into the bedroom and looked at the bed which i only left about 4 hours before and it looked like my enemy, which it does not usually) and i was disappointed, although i knew i had pushed my luck quite a lot considering the day started so badly.

I have slept most of today so far and i don’t feel too good now since writing this but i am glad we managed to go out, however much of an effort it can feel. I made my partner take some pictures of me (she refuses to have many taken of her although i did get one) to mark the occasion as otherwise i will probably forget what we did by next year, as my brain is not so good on that front at the moment!

All in all i did have a very good birthday, and what made it good were all the good wishes, cards and great presents people gave me. People have put so much thought into them and that touched me a lot and made me feel valued and special to them. I still have not even found homes for them all – yes i got that many!!! So thanks everyone, if you are reading this xx.

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(Hmm cheesy, green & nice!)

Special thanks to my partner, who always tries so hard to give a sense of occasion even when i am feeling ill, and who made me a gorgeous parsley risotto on Wednesday for my birthday dinner even though she was dubious about the concept, but we both loved it after all!  She got me a digital photo frame, which i love despite never wanting one before i got it and is so nice to have on when i am just sitting quietly, and a love-at-first-sight wool top! Here i am wearing it. Me, aged 32…

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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!

ME/CFS Awareness

ME/CFS Awareness

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