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These are interviews I did (by email) with two friends with FM as part of my blog for ME/CFS/FM Awareness Day 2010. They are in their own words. To read the main post, click here.

Interview One – Maggie:

I’m a 54 year old woman, divorced with two grown up sons.

How long have you had FM? How does it affect you now, what are your main symptoms and has it changed over time?

I’ve had fibromyalgia for almost 12 years. Since coming to live in Spain 5 years ago my condition has been a lot less of a burden. Largely as a result of the climate –sun and warmth make an enormous difference, which in turn means I am able to walk and move about more easily on a regular consistent basis and am therefore less stiff. In addition the pace of my life here is much slower, the general rhythm of the day is more relaxed. I also live on the coast which means I don’t have to deal on a day to day basis with hilly terrain, and living in a small flat cuts out the need for using stairs many times in a day, and is also a more manageable space re housework, cleaning etc.

The symptoms are many and variable – ongoing pain in some part of my body – somedays, knees, and hands other times neck and shoulders, sometimes one side of the body another day the other. The worst is the sense of fatigue that comes on very suddenly, and unexpectedly, often a result of overdoing things or as a direct result of stress and anxiety – even re minor things eg if washing machine breaks my stress levels are completely out of proportion with the incident  and any anxiety affects my body and its capability profoundly. I am certainly not as ill as I was 5 years ago but that is because I have drastically changed my lifestyle – when I return to cold weather or stressful situations my symptoms are exacerbated. It’s also hard to know how much the symptoms have changed because over time living with pain – I have learned to shut out sensations of pain, if I didn’t do that my life would be miserable.

What was happening at the time you became ill? Do you have a theory about what caused it/triggered it for you?

The onset of illness was very sudden and acute. However I was overworking and caught a virus which caused inflammatory arthritis in all joints of my body – I was confined to bed for many months unable to walk, move etc the doctors told me that the fibromyalgia was a direct result of the continued acute pain suffered during the course of this illness . So in my opinion the overworking/ stressed lifestyle lowered my bodily resistance making me victim to a nasty virus – I agree with the doctors that the virus caused arthritis and fibromyalgia set in as my body was unable to deal with the ongoing pain.

What changes have you made to your life to accommodate it?

I have completely revolutionized all aspects of my life. I have had to change not only the things I do and the manner in which I do them but also my attitude to life. I have had to become much more selfish in relation to my life, and much more discerning re what  I do and when I do it – I live alone now as it is easier for me not having to cope with the practical and emotional demands of other people —-I now please myself and am answerable to no-one. I have to work hard at always retaining a positive attitude. I have had to recognize, come to terms with and accept the severe limitations that the condition brings but to be happy within those limitations.

Is there anything that has helped you to cope with it? (Either prescribed medication or something else).

Acupuncture, hydrotherapy, gentle regular non aerobic exercise eg walking cycling swimming. And plenty of rest. Counselling helped me enormously to come to terms with what I couldn’t change and the strength to change what I could. As for prescribed medication eg ant inflammatories, analgesics, sleeping medication – I personally now only resort to taking medication if it is an emergency as the long term toxic effects of ongoing analgesia are in my opinion counterproductive. When in pain I try everything from application of heat or cold, yoga, just lying and resting and waiting….

How do you understand it and how do you describe/explain it to others?

It’s a complex syndrome which affects the nervous system and pain control mechanism of the body, its also a metabolic disorder in that the muscles burn up ATP very fast hence creating the symptom of fatigue.

How closely do you think it is related to ME/CFS, if you are familiar with what that condition involves? What do you see as distinct/different?

I think there is a definite relation between these types of disorder not so much in the symptomology as in the cause.

What other diagnosis/conditions do you have alongside FM? Do you think they are related to each other?

I think I answered this re having low resistance  virus arthritis = ongoing pain = fibromyalgia develops as a result.

When and how were you diagnosed? Did you know what FM was before that? Did you have to fight to be diagnosed or was it straightforward? Did you match all the tender points? Do you think these are a good indicator of having FM?

 I was diagnosed more than a year after I became ill. I had never heard of the condition before. I think I was lucky that one day I had the fortune to be seen by a hospital doctor who knew about the condition – once the diagnosis was made – I could then understand what my body was going through. Yes I do match all the tender points – and yes I think they are evidently a good indicator of FM

Are there any good web sites/other resources that you would recommend to people wanting to know more about FM?

In the early stages of the illness I found the British Fibromyalgia web site very helpful and their printed information and leaflets were invaluable in helping family and friends  understand what you were going through. I would say find as much info as you can – learn to undersatand the mechanics of the illness and accept that life cannot continue being the same you have to change irrevocably and only you can determine whether that change is a positive one or a negative one.

Is there anything else you would like to say about life with FM?

You have it. There’s no cure. Learn to live with it. Do everything you can to be as comfortable and happy as you can whenever and as often as you can. Don’t let it defeat you psychologically and spiritually.

Interview Two – Jo:

How long have you had FM? How does it affect you now, what are your main symptoms and has it changed over time?

I think I’ve had FM for a very long time. Sometime in my twenties I realised that everywhere on my body hurt if I pressed it. In my late twenties I started to get muscular pain after small exertion. I was always at the doctor’s or the osteopath. But even earlier, in my teens I can remember being in agony after exercise and wondered why everyone else didn’t seem to be as affected. I put it down to not being very fit.

Now, my main symptoms are fatigue, muscular stiffness, joint stiffness and pain in the most used areas – across my shoulders and lower back. If I get into a good place with my energy levels and do too much I can be in a great deal of pain with my whole skeleton feeling like it is lit up. Thankfully that doesn’t happen too often.

What was happening at the time you became ill? Do you have a theory about what caused it/triggered it for you?

For me, stress seems to be the trigger. I have always been very stressed and have had emotional difficulties all my life. I store tension in my body and have problems releasing emotion.  If I have massage or other body therapies it can be upsetting for me as memories and emotion can be released that way.

What changes have you made to your life to accommodate it?

Well, the fibro on its own wasn’t too bad for functioning. I had to be careful about sitting at a computer for long periods of time, spent a lot of money on osteopaths and massage, tried to make sure I kept supple through swimming and pilates and so on. It was when the fatigue really kicked in that the problems started. I had to give up work. Everything changed.

Is there anything that has helped you to cope with it? (Either prescribed medication or something else).

I used to drink alcohol which is a great muscle relaxant, but that has its own problems. At one point I used to get strong, codeine based painkillers from the doctor, and developed a bit of a habit. Not a good way to carry on.  Once I had a diagnosis it became easier and I stopped self-medicating. Now I take low-dose amitriptyline and low dose SSRI antidepressant. The two together really help pain and sleep. Paracetamol is good for bad days and can help stop me building up into a pain crisis. Prevention is much better than cure and I’m much better when I do my Pilates stretches in the morning.  I also regularly do a body scan meditation for relaxation, and I rest three times a day for at least half an hour.

How do you understand it and how do you describe/explain it to others?

I don’t generally explain the pain. I’m more usually trying to explain my fatigue and walking difficulties as they are much more visible. Sometimes my partner asks me if I’m ok and I just mutter ‘in pain’. It’s so familiar to me that I accept it like breathing. It’s just part of me. I understand it as a holding on of tension, my body’s complaint against having to do the work of my faulty emotional processing.

How closely do you think it is related to ME/CFS, if you are familiar with what that condition involves? What do you see as distinct/different?

I think they are one and the same; all part of the same continuum. The FM is, for me, at the sharp end of the wedge. It belongs more to the earlier onset of my ME/CFS. The fatigue, or thick end of the wedge is where my body has been holding this tension for so long it is having to stop. I know when I’m improving because I get less fatigue and more pain.

What other diagnosis/conditions do you have alongside FM? Do you think they are related to each other?

Hmm, let’s see. Irritable Bowel Syndrome, Osteoarthritis, Post-Traumatic Stress Disorder, Depression, Anxiety, Generalised Anxiety Disorder.  I feel they all stem from the same cause which is extreme and repeated stress.

When and how were you diagnosed? Did you know what FM was before that? Did you have to fight to be diagnosed or was it straightforward? Did you match all the tender points? Do you think these are a good indicator of having FM?

I was just on the cusp of moving into the fatigue stage of my illness. I met someone who had just received a diagnosis of fibromyalgia and whose symptoms exactly matched my own. It was a further four years before I could get a GP to even entertain the idea I had FMS. A rheumatologist I saw did not ‘recognise the diagnosis’. After I moved to a new area I asked to be referred to a rheumy I knew was sympathetic. He wouldn’t see me because I had fibromyalgia and they could do nothing for me! I burst into tears in front of my new GP and tried to explain I had diagnosed myself and it was an official diagnosis I wanted. To cut the wait and frustration I paid to go and see the same guy who had refused to see me. Through that meeting I got my diagnosis of FMS/CFS and a referral to an ME clinic. He quickly checked my tender points and said I wasn’t too bad. It wasn’t till I left his office the pain kicked in from just having them pressed. I don’t know if they are a good indicator or not. Probably a better indicator is widespread, long-term pain with a normal rheumatology blood test.

Are there any good web sites/other resources that you would recommend to people wanting to know more about FM?

Actually, there is so much out there, so many different theories and protocols, forums and blogs, for anyone new to this I’d tell them to go with what suits them. This website on emotional processing produced by a team of researchers in Dorset, UK, is my touchstone although it’s not specifically about FMS. http://www.emotionalprocessing.org.uk/index.htm

A useful book is “Fibromyalgia and Muscle Pain” by Leon Chaitow

My feeling is that sustained emotional stress, especially in childhood, results in real physical symptoms and the breakdown of metabolic systems in the body. My experience of it is that some recovery, even total recovery, is possible.

Is there anything else you would like to say about life with FM?

It’s real, it hurts, it can be very disabling, not to mention frightening at times.

Please note, this post contains some moaning but it does end on a fairly positive note!!

It seems that i started to take the progesterone pill almost 2 years ago (it will be two years at the end of June, see post from the time). I have just had my blood lipids checked for the second time, and while i was there i found out more about the results from the test i had last June. I was told at the time that my cholesterol was “a bit high” but at 5.2 or 5.4 (i have forgotten exactly) it did not seem too bad. Today i found out the actual problem is that my HDL cholesterol is actually too low (0.8 where it should be over 1.1 for a woman). I apologise for not knowing what these measurements mean or are measurements of, that was not discussed with me. Only i was told it is the difference between the two amounts which is bad, rather than just a case of one being dramatically too high as i was initially told. The HDL kind that i am low in is the one that protects from heart disease, so it does not sound too good. I will have an appointment with the doctor soon as the new test results have come to discuss if things have changed and what it all means.

The reason i am being tested is that being on the type of pill i am on (it is not the same as the progesterone mini-pill, it is slightly different, and works to stop my periods completely) can affect my lipids profile. Progestins do that apparently. I am not sure if they ever tested my lipids before i was on the pill to make it clearer whether this imbalance is directly due to the pill, or actually due to my illness in general. Apparently low HDL can be associated with certain conditions. I wonder if ME is one of them, especially seeing as i have read (somewhere) that heart-related deaths are higher amongst us, not that i want to scaremonger without evidence! Anyway i will get my results in a few days and see if anything had changed/improved this year. If not i may have to stop taking the pill – not an attractive prospect with everything else i am dealing with at the moment.

I am having various (ongoing) issues in my pelvic region, mainly pain-related and bladder related (possible interstitial cystitis – i am reading up on it – it often accompanies Fibromyalgia, IBS etc) and i wonder if the progesterone pill helps or hinders that. Also i have bad itching which continues to plague me (not long until my dermatology appointment, thankfully) and i wonder if hormones could play a part in that. Both are unlikely but i am getting very confused about what could be affecting what at the moment. I also am having a lot more (constant and worse in intensity) back pain and muscular tension which is also an ongoing problem and with my skin, muscles, pelvic area and all sorts all causing at times serious discomfort i am wondering if i have developed Fibromyalgia-type symptoms… I certainly have tender points on my skin (jump when lightly touched) but are they in the right places?! It all seems possibly connected: the itch, the bladder, the other pain… maybe my brain (pain) signals are just all a bit wrong – i just hope that the doctors can intelligently help me to understand it and suggest medications that may help with more than one thing, so that i don’t end up taking many more drugs, overloading my poor body and wondering what side-effects are coming from what. Already the POTS specialist wonders if Midodrine is contributing to my itch – i really don’t want to have to stop taking it to find out…

I do want to try to find some answers, even if i don’t really want to take more drugs as things just seem constantly a struggle, the itch has really got me down and just feels like the last straw on top of all the other symptoms i have. It affects my sleep and rest in the day, creates a stress reaction which is very physical and draining and it has really been getting me down. How can i manage my basic condition when i have all this discomfort? I am certainly not getting out of the house much and my quality of life feels almost as low as it has ever been, though i find this hard to measure. I really have been feeling the last year that although the Midodrine has helped to control my POTS symptoms to some extent; they are still present, progress has plateaued and other things have come in to take their place to disable me. The years just pass and so many ongoing symptoms do not seem to be addressed; like my back problems which i have had from day one, literally. I cannot believe that a) there is nothing that could help and b) that spinal health will not affect my overall health, particularly as many problems i have a neurological and the spine is pretty important in carrying messages etc from the brain… This is a subject for another post, and i start to ramble – just needed a little rant!!

Good things: my mum is visiting tomorrow, so i can have a moan, watch her weed my garden, have some fun, and be distracted from it all for a few days – i am really looking forward to that 🙂

I had three visitors last week (one, then a couple) and it was a full on social week for me with three evenings (had a break in between) with talking and catching up. It felt quite strange in a way and i have lost some confidence in face-to-face social interaction (except with family etc) but i really enjoyed it, coped pretty well energy-wise and felt ok to interact most of the time (and i want more! I resisted the urge to chain them up and keep them here). I did have a major crushingly tight headache which lasted about 3 days solid and other flare-ups as a result of the exertion, but i feel it was worth it for the pleasant distraction from my woes and a great break from the usual routine. I certainly can’t visit anyone else at the moment, so i may try to encourage people to come to me, though it is always a gamble and a certain amount of stress/pressure. Well, we are all accustomed to the “no pain, no gain” way of life, eh?

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, 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…

 

ME/CFS Awareness

ME/CFS Awareness

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