We’re all going on a Summer Holiday la la la la ala lala laaaaa!

Well, today i am going away for a few days to the Cambridge Folk Festival! I am VERY excited and a little nervous about overdoing it (which is inevitable). We have planned everything to the last detail and packed for every eventuality so now all we can do is GO FOR IT!

I have had quite broken sleep (too excited) but sure i have had more than i think. Will just doze/deep breathe on train as much as possible and try to preserve energy… I am not feeling too bad at the moment. Last week i was like a zombie and could have slept all night and all day (which is quite unusual for me) and this week (until yesterday morning) i have been plagued by headaches but i am hoping that before any new symptoms pop up i can have a few days of calm and relaxed feeling ok-ness – everyone: CROSS YOUR FINGERS!

I have been before as i used to live in Cambridge, it was where i became ill, and i have a lot of very good memories of my time there as a well young thing, dancing the nights away! I didn’t often dance to folk music then but i hope to be tapping my feet a bit this weekend!

I will be back on Monday and will try to say how it went when i feel up to it – i am hoping that even if i don’t feel great all the time that a change of scenery will do me the world of good.

I am taking my holga (camera) and note book and endeavor to be creative as much as possible while i am there! A haiku or two at least

see this excitment building video!

The “Joys” of DLA Appeal and real sunshine JOY

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!

Grumble

Had planned to go out to the local Gay Pride today. Only thought about getting taxi there and back and sitting on a bench for a little while, watching the world go by and chatting to anyone i knew… it was never going to be high octane but i woke up this morning for the second time and knew there was no chance.

Have since been back to bed again and felt up to a bit of tv and lunch etc. but can’t help feeling disappointed that i could not go. Sometimes it’s easier than others when i can’t do something i want to do, depends what it is and how long it has been since i went anywhere. I have not had a good week and was really pinning my hopes on a couple of hours out today.

An old friend is getting married in August and has invited us to go, but it is being held where I grew up which is a long journey and i know i can’t go. Also we are planning to go away for an over ambitious few days away the week before so i know i will still be recovering from that, if i get to go there anyway!

It is things like that that only happen once that really get me. If i was a well-woman i would be there without question.

I was looking forward to today to feel part of the community and part of an event which i miss. My identity as someone who is chronically ill/disabled has taken over all my attention and i rarely focus as much as i used to on other aspects, such as being a lesbian. I am very interested in identity politics/issues and i find it so interesting how the aspects of our identity that we feel are most relevant are the ones that are affecting us most at any one time. I barely feel like a lesbian these days, which may seem ridiculous as i love and live with my female partner but it is not something which causes any issues for me on a daily basis (i am not visibly lesbian as i am rarely out in public with my partner), whereas i am reminded that i am unwell and unable to do so many things on a minute by minute basis.

Well i don’t feel able to be very articulate right now so will leave it there…

Maybe i will feel better tomorrow…

CBT… update!

Well, i was supposed to have CBT on Monday. I was not well enough to go, so cancelled for the second time in a row. This time, however, i spoke to the psychologist who does it and he asked if i wanted to make another appointment. I said that i felt that the chances of me being well enough at any given time are quite slim and that even when i did feel able, such as the last time i went, i suffered a bad flareup of symptoms and felt very unwell for about a week afterwards, and that i did not think this was a reasonable thing to have to go through. I said that i thought it was better that i don’t hold up his waiting list and waste appointments as i did not feel this was the right time to try to attend CBT… not that i think there will be a better time

 

He was very understanding. He said he had had contact from my insurance company (who had ”suggested” i had CBT in the first place) who wanted a written report from him. I had already told him that i was uncomfortable with them and the information they have gathered about me, some of which i felt was not particularly relevant or accurate, so he told them he would have to show me anything he wrote before he sent it. Very nice of him. So after i said i did not think i would be coming back he offered to write a letter to the Insurance company on my behalf and said he will email it to me to check beforehand. I have not had it yet and i hope he does do that. He even asked me what i wanted it to say! I said that if he could back me up that i do not seem well enough to attend and also if he felt comfortable to say that he does not feel i am in dire need of CBT right now, i would be very grateful… he has only seen me for two hours in total and that was just asking me a lot of questions and setting the scene i felt, rather than actually doing CBT… so we will see what his letter says…

Also i did contact the DLS (Disability Law Service) and explained my situation to them, that i felt bullied into CBT and worried what they would “suggest” i undergo next, or that they would stop my payments… i don’t think i should say exactly what they said but they sent me a good email of suggestions of what to do if they do continue to make claiming difficult Thanks DLS! I feel more empowered! Thanks also Rachel for sending me the link in response to a previous post on CBT.

I probably should have told him more specifics of how badly attending had affected me last time as it was like i had used up all my cognitive function in one go answering all his questions and spent the following couple of days lying in bed and my brain was in meltdown – random thoughts flew in and out – i couldn’t remember certain things and kept thinking i had forgotten things (i probably had!) and it was all a bit traumatic. Although maybe if i told him that he would think i needed more CBT… sigh! So for now i am released from it, or at least in the process of, i am just waiting for the phone to ring though… the insurance company have not rung me for ages and it has been so nice to be left alone as they were ringing me very often for a while there before the CBT started… i suppose i will have to start screening my calls again… sigh. I always ring them back but sometimes i just am not in the right frame of mind to deal with their stupid questions…

Hormones…

Warning! This blog discusses women’s issues, periods etc!

Last week i went to see what i thought was a hormone specialist… it turned out to be the sexual health & contraception clinic – which was ok as my main query was about my periods…

My main issue is that my periods really drag me down. This is nothing new, but the last 6 months or so i have seen a definite pattern in my symptoms, in that i have a “better” week (or sometimes just a few days) just before my period (when i can feel pretty good “at rest” and even manage to go out and about a little bit without major payback) and then just before my period i start to feel bad, feel very low in energy and everything is a struggle during my period, with all my bad symptoms of headaches, dizziness, muscle weakness, achiness, sensitivity to noise, etc etc and then it seems to take another couple of weeks to gradually get over the event and it all starts again.

The doctor i saw was a little confused as most people feel worse the week before, but has given me Norethisterone, a progestogen only pill to take, starting on my 5th day of my period and to take continuously (i am going back in 6 weeks or so for a check up). If it seems to agree with me, she said we could consider the Depo Injection… (very scared of that as heard it can have bad side effects and once you have it it can’t be undone). The idea is that my periods will cease and won’t drain me so much, although there may be some spotting and side effects (weight gain, bloating, spots, dizziness – just what i need!). They don’t know how it will affect me until i try so i am giving it a go, although not without some concerns. I am just hoping i don’t miss out on my few good days a month as a result!

I am willing to try it now as what i used to consider to be an ok/average day is now the highlight of my month and my general level of functioning has gone way down. My hormones may not have much to do with this but my period seems to be just one more burden on top of all the others that i really could do without. Unfortunately there does not seem to be a magic answer so i may be making things even worse but don’t know til i try.

Progestogensare like natural progesterone but are synthetic hormones and are not without controversy and i am not entirely comfortable with “polluting” my body and messing about withit when it is evidently already struggling to function, but it is worth a try. I also hate taking things then wondering if my odd symptoms are due to side effects of a drug or if they are the ME, and not knowing how i would be feeling without taking it…

Dr Sarah Myhill does not recommend people with ME take the pill, but she does not really talk about what to do about period hell either so i don’t see any obvious alternatives! She talks more about contraception, which is irrelevant to me as a lesbian. She does say Progestogens can cause depression. I have not been depressed the last couple of months so will be suspicious if i suddenly get down. I have been taking Agnus Castus for a long time, which is a herbal remedy and which definitely helps with keeping periods regular and i think make mine last for less days as well. I had stopped taking it last month in case the hospital wanted to take any blood tests and my period was late this time, which has not happened in a long time, so i think it certainly is worth a try for anyone not on the pill who has issues with PMT etc. (Kira brand has seemed best to me).

So, my period came today! I am so happy as it is 3 days late and have been feeling very premenstrual, as well as having bad (and different to usual) leg pains – from my hips and down the sides into my knees and beyond! Also i usually get bleeding gums when i clean my teeth around the time of my period (who knows why) but yesterday when i got out of bed in the afternoon and sat in the next room chatting to my girlfriend, my gum spontaneously started bleeding into my mouth! It stopped quite quickly but was quite copious there for a minute. Yuk. I even started looking through the kitchen cupboard yesterday and throwing out all the out of date rice, dried beans, etc. “Nov 2007? looks ok… 2006 throw it out!” typical PMT behaviour…

This means that i need to start taking the new tablets on Saturday… 3 times a day! Better make a ticky chart or i will forget whether i have taken them or not… I am just hoping that i will never have to be that woman again who constantly talks about her periods, when she is due, how bad she feels, blah blah so boring, but recently whenever anything is happening (an appointment, visitor, etc) i have to check my diary and say whether there is any chance i will be feeling even half up to it… but how much of a long term solution is taking this pill i wonder? Surely i can’t just take it forever? How messed up will my hormones be after taking it? Hmm.

The other thing that i wanted to talk to the hormone specialist about (turns out i need to see a separate Endocrinologist for this) is to discuss the chapter in Fatigued to Fantastic! about hormones and ME (see previous post). The doctor i saw at the sexual health clinic said that there is a doctor at a local hospital who is interested in people who are slightly sub-optimal in various hormones and the effect that can have but that she did not think they would try treating me even if i am as they tend to have a “hands off” approach. This means “do nothing in case you are sued” approach, or a “NICE guidelines say NO if you have ME” approach, i can only assume… So if Dr Teitlebaum is right about hormones and ME/CFS then i will probably never know. I could try to get referred to that doctor but i don’t expect there is a lot of point in wasting my energy and taxi money. This is a bit disheartening as i am doing everything else in the book (taking supplements for my mitochondria etc) but if there is a hormonal problem holding me back i can’t do anything about it myself… what is the point of trying to help myself if i can’t get any professional support/expertise?