Ashy’s Blog

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…

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?

Well, last weekend, despite a bad lead up (see last post), i went to Scarborough!

I had booked it well in advance and although i knew there was a possibility that i would be unable to go when the time came, or that i would get there and just lie in bed the whole weekend i was determined to give it a go. I booked it when in the process of applying for DLA (as felt so depressed i needed something to look forward to), in the hope that by the time the weekend came i would be in receipt of some extra cash, alas it was not so, but it turned out that thanks to the DWP sending me my incapacity benefit form (to reassess my ability to work) and having my DLA medical the week before, i needed it more than ever.

My sister also has ME and has been really struggling lately so i invited her along too and so we had some quality sister time! We do not see each other much as she lives near my mum, over 5 hours away by train for me, which is not something i can do without serious trauma & payback. She had to travel over four hours to Scarborough, whereas for me it was only two, but we travelled the last hour together as at York i got onto her train!

I chose last weekend as i tend to feel a bit more human the week before my period is due (contrary to the rest of the female population, but i like to be different!) so i booked it then and hoped for the best. I could never have believed that it was possible to go from how ill i felt a couple of days before i left to how i felt when i was away. I usually say how frustrating it is to have to take my illness on holiday with me, that there is no escape, which is usually true, but i really felt as if i had a holiday in every way! Of course i was not going out dancing and behaving as if i was not ill - i had a good sleep every day and paced myself as much as possible but i did not have a headache, my legs did not feel too painful until the last day, and my back coped with sitting on the train for two hours much better than i could have hoped for.

We stayed at the Fountain’s Court Holistic Hotel, which i chose because it is a calm & quiet place that offers all kinds of alternative therapies. We both had a Tibetan Acupressure Head Massage the afternoon we arrived and it helped me to relax and shake off the journey completely. I also had two sessions of Reflexology over the weekend and my sister had a Shiatsu Massage and a Hot Stones Massage. I had rung up in advance and had explained that we were both unwell and that we may need to sleep in the day and have peace and quiet and we were assured that we would be well looked after, and we were! We were really made to feel at home. A highlight for me was on the Saturday afternoon after a good sleep we had a hot tub in the rain! We also went to the Sea Life Centre. Sunday was really windy but bright sunshine so i took quite a few pictures as well.

After i got home i did feel less well, but nothing too bad and i feel i got away with the extra activity without serious payback… hurray!

A few days after getting home though, i found out that my DLA application has been turned down and i did feel really down about it that day, and as if all the benefits of the weekend had suddenly gone, but i have pulled myself together, looked at my sunny photos and won’t let the b*****ds get me down

In general i have come away from the weekend feeling much more able to deal with all the things that need dealing with: benefits, insurance company, CBT, medical issues, etc. I know they are all tricky and i still don’t know what to do for the best in most cases, but i have certainly benefitted from having the boost of a change of scenery, meeting some lovely people, feeling really good for a couple of days, seeing my sister (and singing in the hot tub), having relaxing treatments, taking some good photos, feeling that i can cope with a short journey (sometimes), and knowing that there is somewhere reasonably nearby i can go when i need to do it again, which i am sure i will!

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.

Here are three out of a recent film i took at the nature reserve near my house - not even on flickr yet - hot off the press!! I have only in the last year or so worked out how to use my Practica camera and it is quite cumbersome and heavy but I have some filters that i can screw onto the lens which magnify the image up to 5 times which is really great. The good thing about macros is that you can find something to take a picture of anywhere - even on your doorstep - i have enjoyed re-discovering areas that i thought i had taken pictures of from every imaginable angle… i was wrong!

Rachel M commented on my last post and said she would love to take macros so i thought i would post some for her to keep her going until that is possible…

I cannot believe how long it is since i last posted and this is not even going to be a proper post - more a holding page to say i have not disappeared! The last few weeks have been unusual as my partner went away for nearly two weeks, some of which i was alone and some of which my mum came to stay so i was either fending for myself or spending time with my mum, so had no energy to blog etc. Since she got back i have been firstly recovering, catching up and getting back to normal and then DLA rang on Wednesday and booked me in for a medical on Friday… needless to say it was a fairly horrible day and since then i have been mostly in bed. Feeling semi-human this evening but still taking it very gently. There has been so much i could have blogged about happening, but i have not had any free energy to give, and have also been having a lot of headaches… such is life with ME… BUT I have another reason for not blogging much any time soon and that is i am planning a weekend away this weekend with my sister to a hotel which offers massages and other therapies and a very chilled out atmosphere! So am hunkering down this week and saving all my energy to make sure i can (a) get there (2 hours on train) and (b) not lie in bed the whole time!

So for the meantime i am posting a picture of Steel Rigg, which is on Hadrian’s Wall which my mum drove me to last weekend - it was a beautiful drive and we sat listening to larks and watching rock climbers and it was so nice to get out of the house in a relaxed way on a sunny day!  

I was reading this blog for ME awareness day, where “Signs” talks about the story in the media recently where a woman (Elisabeth) in Austria, was locked up in a cellar by her father, Josef Fritzl for 24 years, and how people find ways to survive under extreme suffering. It reminded me of Alan Johnston, the BBC reporter who was held captive for 114 days in Gaza. I saw a headline after his release and it really struck a chord with me. Like Signs, i am not comparing my life or how it is living with M.E. to being held hostage with an explosive belt strapped to me, of course not, but what he said about Freedom when he came out really made me think:

“You want to do everything at the same time, to read books and papers, go to the movies, go to the beach and sit in the sun, and eat and talk and all the rest of it” - Alan Johnston

Freedom, it seems to Alan, it just being able to do everyday things. When I read this list, I could not help but draw parallels to my own life, as these are all things that I cannot do (or greatly struggle with) sometimes. I cannot do some of these things for months at a time, maybe even 114 days…

Also, in interviews about his time in captivity he has talked about things that made it easier for him to cope, such as listening to the radio and hearing that people were trying to get him released and were thinking about him, and being allowed to watch football once. This is something that interests me as i have found great comfort and joy in small and simple things when at my worst. When life becomes very small and you feel cut off from the wider world, small things can take on a greater pleasure or significance than they otherwise would.

This also brings me to a post by Rachel yesterday called “one day i will…” where she thinks about all the things she wants to do one day (when she is free if this illness) that she is unable to do now and considers that that day may never come. This is something that everyone with a disabling health condition has to come to terms with, but for those of us with fluctuating conditions where there is no prognosis as such given to us, how do we think about the future?

I am often asked by doctors, occupational health, psychologists etc the same question: “How do you see the future?” I hate this question and am usually flippant in my reply these days, saying i have not got a crystal ball. The reason it is asked is, i think, to perhaps get an idea of my mental state, and also (definitely) to judge my motivation to get back to work, but it is not a question that can be answered simply. I am also asked if I get the same amount of pleasure, or joy, from things as i used to. This is something asked recently with ticky boxes on my CBT forms… but there is no box to tick for getting more pleasure from something. Sometimes when I have been able to do something that I have been trying to do for months it can provide such a sense of achievement and pleasure, far greater than it would have otherwise.

I am reminded of Rachel M and her photo for ME Awareness Day: Long Driveway where she describes how cut off from the world she can be and also her blog about meeting up with a friend: Big Day Out where she is so full of joy to have been able to go and meet up with someone and have such a nice time, and how it left her smiling for so long afterwards.

Lastly, I read “The Plague” by Albert Camus a while ago, which is a novel about a town in which an epidemic breaks out. The town gates are closed off and the inhabitants are trapped inside and no-one knows how long they will be there for and whether they will catch the disease. These people are trapped and living in fear and the book looks at how they respond to this situation. Some of them were just visiting the town and felt they should not be there at all, some of them are separated from loved ones and do not know when/if they will see them again. These sentences are taken from pages 67-68 (Penguin Books, 1960)

“…we returned to our prison-house, we had nothing left us but the past, and even if some of us were tempted to live in the future, they had speedily to abandon the idea… once they felt the wounds that the imagination inflicts on those who yield themselves to it…

…our townspeople very quickly desisted… of trying to figure out the probable duration of their exile. The reason was this. When the most pessimistic had fixed it at, say, six months; when they had drunk in advance the dregs of bitterness of those six black months, … and… straining all their remaining energy to endure valiantly the long ordeal of all those weeks and days… (something) would suggest that, after all, there was no reason why the epidemic shouldn’t last more than six months; why not a year, or even more?…

…Therefore they forced themselves never to think about the problematic day of escape, to cease looking to the future, and always to keep… their eyes fixed on the ground at their feet. But, naturally enough, this prudence… refusing to put up a fight were ill rewarded. For, while averting that revulsion which they found so unbearable, they also deprived themselves of those redeeming moments, frequent enough when all is told, when… they could forget about the plague.”

 This, to me really sums up the tightrope we (with ME and others whose freedom is compromised) have to navigate when coping day to day and dealing with the uncertainty of the future.

Well it is one week since i started taking my energy revitalisation vitamin power stuff, along with CoQ10, L-Carnetine, B-vitamins etc and over a week since i started to take D-Ribose, all as recommended in the book From Fatigued to Fantastic!

Although you are not supposed to feel any better so quickly i am a bit disappointed to have missed out on the two day high reported by Rachel!

I have had the odd moment of feeling good this last week, although not like real “lift off”, just happiness to have a whole day without head pains and so on… although i have had them most days and also bad heaviness/aching in my legs and back & arm pains that feel muscular and it’s a bit worse than usual… so if the d-ribose helps with muscular recovery then what is causing that? (I think tension caused by going to CBT and thinking about it too much may be partly to blame for the muscular aches - my thighs must tense when i am stressed as often they shake/tremble/ache after i speak to people intensely… wierd!). Walking the dog for even 10 minutes has felt almost impossible most days and i have shuffled to the nearest bench, told her to “get on with it” and had trouble getting up again. So maybe next week if these symptoms ease i will be able to see it as “proof” something is having an effect!

I am not too downhearted about it, it’s early days and i am not expecting miracles, but i am hoping i find my tasks this week is a bit easier to complete… fingers crossed!

hot dog, originally uploaded by ashy_sheela.

Made it to the beach last Saturday (10th May) while the sun was shining!

Well, I did promise to write about CBT, a contentious topic for us people with ME (pwme)…

 This post has been really hard to write, partly because I am so drained of all energy from going to CBT on Monday (It is now Thursday and I have been writing this gradually since) and partly because it is hard to write coherently about something that I am finding is linked to a lot of stress, anger, frustration, powerlessness etc. I am hoping that writing this, although draining in itself, will be more therapeutic than CBT has been so far… ha ha.

It (Cognitive Behavioural Therapy) is hailed by some as the one treatment that research has shown to be effective (but did these people who got better really have ME? Would they have improved anyway?), it is recommended in the NICE guidelines for treatment of CFS/ME but there is also a lot of evidence that it is unhelpful, no better than a placebo, or may improve people’s mental wellbeing/coping abilities but they are still as physically ill as before… see www.theoneclickgroup.co.uk and search for CBT and you will see some recent research and debate…

It also seems to be seen as a primary treatment option for this condition, which angers pwme as much as it would anger anyone with a serious physical illness… It apparently costs the NHS about £100 per CBT session so many people think that maybe focussing all that cash on physical investigations/research may be more worthwhile. I am sure it is very effective for mental health issues and for helping some people deal with their illness, but a cure it is not.

So, I had my second session and it was ok. Not much else to say to describe it really… nothing much of any excitement happened! I don’t think we have got started properly yet as we just seem to be collecting facts…

In the first session we discussed (or rather I was bombarded with questions - normal counselling, it seems, this is not!) about the time I originally got ill up until the present (a period of over 9 years), and this time we discussed all times before I got ill. I did get a bit upset talking about the time immediately before I got ill, as things were going particularly well for me then, but apart from that the session was all run of the mill. As most pwme will attest, we have to narrate our lives and histories over and over again to every new health professional we come into contact with and it just seems like going over the same old ground… While my CBT guy seems “enlightened” and does not seem to think CBT will be a miracle cure (but may help me to cope with my life better) he does seem to also be trying to figure out the mystery of it as well, he can’t resist it. They never can…

Guess what Mr Psychologist? No one who came before you made any startling discoveries about what caused my illness, but have a good rummage about anyway, be my guest…

He asked me questions about my personality… I can’t remember the question but basically was I the sort to run myself into the ground by overachieving, not relaxing, being wound up etc… Well, sorry to say that although I was young and passionate about life, threw myself into whatever I did with enthusiasm, I don’t think to any extreme that would have made me this ill… I get the feeling that it would be very convenient if I was a classic Type A personality then we would have something to work on. Even if I was, living with ME for all these years has changed me and my personality forever.

He asked me about my home life growing up, and unfortunately, it seems, my childhood does not seem to be any more unhappy/traumatic than most people’s (was your mother at home when you were growing up? er, yes, and my dad worked from home too!). Yes, I have had my share of difficult times but who hasn’t? When I try to say that the time just prior to getting ill was actually one of the best I had had for years, I am viewed with scepticism… (am I delusional now? or is it just disappointment that they can’t find anything/anyone (me) to blame…)

At the end of the session he asked me to write a diary for a week and to put in what I do each day, and also mark each activity with scores of 1-10: my mood, how much “joy” I am getting out of doing it (as opposed to before I got ill, I think), how much energy I have when doing it and afterwards, any major symptoms, how much of a sense of achievement I have from doing it, etc etc. He then said that we can look at it and he will be “another head” to be used to look at these problems and see if we can improve anything.  All well and good in theory, but even he does not seem very enthusiastic. But maybe the diary will at least give him an idea of the severity of my condition which he does not seem to have grasped yet… maybe I will give him a copy of the one I did a few weeks ago for my DLA application, or one I did when I was attending the hospital group as well, just for good measure.

I may seem very negative about this whole thing, and unwilling to help myself. I do have problems coping with my illness and am getting increasingly frequent bouts of depression and sometimes anxiety too. But these are linked to times when I have an increase in symptoms and illness severity and I am just unsure if I am willing to give so much energy to this as an attempt to improve these things or whether I would rather see a friend, go out somewhere, get a massage, read a good book, etc instead… If I am going to overdo it, I would rather blow my energy on something with a feel good factor about it! It seems to take so much energy to get someone to understand my illness and how it affects me as a starting point for them to be able to engage with me, with no promises of it being anything more than a pointless exercise. I am trying to be open minded and “trust the process” but it is causing me a lot of stress already.

Unfortunately over the years I have had such bad experiences with psychologist-types (from NHS, insurance company etc) that I really am coming into this with “baggage”… I need therapy to get over my traumas from previous “therapy”… oh dear! After the first CBT session I got quite worked up about things he had said and judgements I could see him making about me (not very ill, looks fine, possibly in a “benefits trap” - yes he used that phrase) and had a bit of an anxiety attack… I don’t really care about what he thinks about me but what his report will say could matter, see HPI below…

Another reason to feel negative is how completely draining it is. Monday after the session I had a lie down but it was nearly tea time and I did not want to sleep so late on as it would affect my sleep pattern that night. I felt so awful that evening, brain completely mal-functioning and a struggle to watch TV even on quietly. The next day I was spent most of the afternoon in bed as I said in my little post, and I still feel terrible now. There are so many things I would rather have used that energy for than for telling someone about my childhood… again.

 And so why am I even going?  Well I have to go as it has been recommended by my HPI provider (HPI is an insurance payment - my employer has an insurance policy which means they give a proportion of your wages if you are on long term sick). So if I don’t go, it may seem as if I am not trying to help myself and they may then stop giving me my benefits… it was made quite clear to me that I need to comply with their treatments, as they want to “help me” and enable me to get back to work. While it was made clear that I should comply, they have not told me what my rights are to refuse treatment etc and what processes exist for any debate on this.

They are all nicey nicey on the surface though and ring me up all-the-time to check on how I am feeling about work, which feels like harassment sometimes. (I try to say it doesn’t matter how I feel about work as I am not in a position to even consider going! They seem to think that if I thought positively enough I would give it a go, and then everything would be ok… and cannot conceive that I physically cannot get there or at least, not without serious, distressing symptoms which would make me unable to function).

Although it is not a fortune I am getting, as I was only able to work part-time, I am very pleased to be getting this extra cash and don’t want it to stop, but how much can I put up with to keep getting it? If I say I don’t want to continue with CBT, what is next? Another doctors/psych visit (please no, I can’t cope with that), GET? (they already asked me if I have heard of it…), or just stop paying me? At what point do I say I can’t cope with the stress of the insurance company, and hand my notice in at work which will stop the payments? Why should I have to do this when I am still too ill to work and therefore entitled to the money? What about all the people in the same boat who desperately need the cash and do not have the choice? Is this what life without the NHS would be like? I feel coerced into having CBT. No, it has not been a trauma as yet, but it seems like such a waste of my energy. It is also caught up in all the baggage that I have due to the insurance company and the two doctors that they have sent to visit me, who originally recommended i go to CBT, whose visits I found very traumatic… I may talk about that another day! 

Well, this has turned into a RANT! I better leave it there. I had better save some energy for my diary duties… hmm maybe I will start it tomorrow… or the next day… or the day after…