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Went to the hospital again today to see the POTS specialist.
Firstly she has started me on Gabapentin for pain and itching – she had mentioned it last time and I am so glad she was still keen for me to try it as I have read about it and talked to people who take it and it does seem a fit with the problems I am having. I asked her if it is basically that I am having symptoms like Fibromyalgia (FM); that it is neuropathic pain and she said yes, and that it is common with CFS and that an additional diagnosis would not help me (there are additional treatments recommended for FM so there is no point).
This brings me to the POTS medications. There are no treatments recommended specifically for POTS, like ME/CFS and FM (or is there one for FM in the pipeline? I forget). She started me on a new drug last time which is an angina drug (Ivabradine) to slow my heart rate to see if that helps. I am unsure if it has helped but I think that it possibly has helped a bit. It has been hard to judge as it is a small dose and also there has been so much going on with my itching, pain and sleeplessness that I have barely been thinking about my POTS symptoms (but that may be a sign in itself that it is working!). But all this is now irrelevant as my GP has said I cannot take the drug as it is not a recommended treatment for my condition and it won’t fund it, whether it helps or not. Seeing as there are no drug treatments listed for POTS they are basically saying I will not be treated, even if the specialist thinks it might help. This leads to the conclusion that the only reason I AM being treated at all (I take Midodrine, an unlicensed drug that I get through the hospital) is ironically BECAUSE the drug is unlicensed so the specialist can give it to me (I think because it is part of research) and override the GPs who have complete control over what drugs can be prescribed. Apparently even in the US where I thought POTS was much more accepted and treated there are no drugs trialled and approved for it. I see again how very lucky I am to be getting Midodrine. It seems ridiculous that a seriously disabling condition that can be easily tested for and monitored is not researched more widely.
I am happy to report that Gabapentin is an expensive drug (I want to make them suffer now, ha ha!) but that they cannot deny me that, as it is listed for neuropathic/nerve pain AND itching. She said if it helps I can then cut down on the anti-histamines which would be good, I don’t want to take quite so many things!
One good thing is that she is putting a note to the GP to try me on a sleep medication (I did not catch the name) if my sleep does not improve once the Gabapentin starts working, so it is nice to have that option if I need it, without having to wait for months for the next appointment to discuss this.
I asked if other GPs allow people to take the Ivabradine for POTS and she said my GP is the FIRST to deny the patient access to it when she has recommended it! I am shocked about this and asked how I could challenge it. She said I could go and talk to them, but apart from that there is little I can do, except change GP! I am not happy with my GP but I always thought maybe it would be the same anywhere. I would consider changing (as I have to get a taxi/lift to the existing one anyway, albeit a very short ride) but how would I know if it would be any better before I got there? As I cannot say for sure that the Ivabradine really would help me (as I have not been allowed to give it a proper try) I do not have a very strong case to argue anyway… I also worry that a new GP would see that I had been refused and think I am going to be a troublesome new patient to have and not want me and my mammoth medical files transferred over to their practice. This is all about money. I don’t think they can say no, but there is little point in moving if their attitude is as negative towards me as it is where I am. It is a concern in these economic times. I am unhappy that my GP seems to be saying no when others say yes to this drug. Should they have the power to choose, and operate a “postcode lottery”? As it is not the sanctioned use of the drug I suppose it is down to their discretion, but when there are no drugs approved for a condition where does that leave us? Without treatment is where. Apparently there is little interest in researching this rare condition (but would it be seen as so rare if people were actually diagnosed properly?). It it not about helping people who are suffering from the most disabling conditions, it is all about making money, after all.
When will all this money stuff end?
My employer has very kindly informed me that i could apply for early retirement through ill health. This does not mean they know i am eligible, only that my pension may be frozen soon as i have been off work for 2 and a half years so the opportunity to apply may then cease; so they are telling me it is an option… i think i can apply and then see if i want to take it when i know the outcome of the application.
I know nothing about this and now i have three weeks (now 2 and a half) to find out all about it and decide if i should apply. As it will involve medicals etc i do not want to bother if there is no point. Also as i only worked part time for a few years it is not a big pension that i have and it may not be worth it in terms of the effects it has on other benefits i get, such as incapacity benefit. But with the changes to incapacity benefit, is that even safe for the future and should i try for anything i get chance to have?
It seems i can apply and then be awarded either full or partial incapacity (or nothing, obviously). Partial is probably not worth much as it is a reduced amount, and if i get it. my HPI insurance payment will stop (as it is an earnings protection payment and i would be retired! HPI is worth a lot more than the partial incapacity payment). To get full i need to be seen as unable to do my current role or any other in the long term… how can this be proven with a condition like ME? I have been ill for 10 years and am unlikely to be ever fully well again, but you have to be unable to do more than 10% of previous work. As i was part time, i am not sure if they would count that level? (that would be 2 hours per week). I think i could argue now that i am unable to consistently do that and have been for a couple of years, but to say that i could not in future is tricky. I have started medication for POTS symptoms and have seen some improvement, and am unsure if more improvement will come, or not. If awarded they keep tabs on you and if you improve/work then the benefit stops, which is fair enough. Again the amount for full incapacity is not much on an annual basis, but the lump sum is quite healthy!
Another thing to consider is how safe my HPI payment is long term, can i count on that?
Does anyone have any experience of applying for ill health retirement with CFS/ME? If so any info/pointers would be welcome!
The other thing is that i have my student loans (three years worth) sitting there unpaid, as i have never earnt enough to start to repay them. I think i remember somewhere that if you retire due to ill-health you don’t have to repay! That would be nice… otherwise it is written off when i reach the age of 45 if still unable to repay, so another 13 years to wait on that score…
comments and any help welcome on this one!
So: PAIN! I have middle/upper back pain, and have had for the whole period of my illness (9 and three quarter years) and this is accompanied by tension in my shoulders and neck. More recently this has stepped up a level and i now have very frequent headaches, where my whole head, jaw (TMJ), forehead, neck, shoulders, upper back etc etc are very tight and tense and very painful. I have found some medication that helps but am not keen on just taking it every day. I use a tens machine on my shoulders (you can’t use it on the neck/head), and have a heated wheat-bag around my neck or balanced on my head most of the evening… this has been going on for over two years, but has gradually become worse and more frequent, so that an evening where i do not feel this tension seems like a real special occasion! My back is also very noisy(!) – i wear ear plugs in bed and this means that i can hear internal noises more than external, and when i turn over it is like several castanets going off at random click click clack…
So i have been trying some alternative therapies. When i found out i had POTS recently someone (cusp) commented that cranial osteopathy can help, and i also read that somewhere else, and had had it before years ago when i first got ill, so knew what to expect, so i managed to track down a place nearby that offered it and rang them. I was told that the first session would cost £75, and that further sessions would be £42. I could get 20% off the first session by signing up to their emails, so that makes the first session £60. I hung up and had a think… it is more money that i have ever spent on a therapy, but it’s the only place that does it nearby, if it works it is worth it, and after the first session it is more affordable, even if not cheap. I have only really had one alternative therapy before (apart from massage, which is always nice) which i can say was definitely worth it and produces real benefits/results and that was acupuncture. I can no longer get to see that person as i had to drive there, which i became unable to do with any certainty, and would feel unsafe on the way home in particular. (I have not found anyone who will come to my home). I have never regretted spending that money, and i thought that considering how bad things are, it may be worth giving this a try. So i rang back and booked in.
I went there on the bus, as it was only ten minutes away, both bus stops have seats of a kind, and a taxi (the preferred option) would have added to the cost. When i got there i was faced with a very large flight of stairs. This place is primarily a physiotherapy centre and the more i think about it the more incensed i am about their lack of accessibility. “Got an injury? hobble up these stairs for therapy!” hmm, nice attitude. The staircase is very fancy (solid wood) and very wide, so there is ample space for a Stannah Stairlift, or escalator, if not a proper lift… the amount they charge (and the fact that they are a company at more than one location, not a tiny business) it is shameful. So i dragged myself up the stairs and approached the desk (again very sleek with no chairs anywhere nearby to rest on) where the receptionist (who herself has ME and should be “standing up” for these things ha ha) dealt with me and eventually showed me a chair.
The therapist was very nice and seemed very knowledgeable about ME and made some good observations of my physical state. The therapy also felt good, like a gentle stretching dance, lying down. My back and head were much more painful the next two days but i saw this as a good sign. As i left however i learnt that the next session, an hour, would cost me £75! From the description the receptionist had given it has seemed as if the other sessions would be £42 for an hour, but apparently that is if they are half an hour. It makes sense when you think about it, but i am not always quick on the uptake these days, and cannot believe how much it costs! Also she can only do Tuesdays, which is not very convenient, as unless i want to walk the dog and go out on the same day (which i try to avoid, for pacing reasons) i have to find a day that my partner is going to be home to do the dog. Also, i expressed concern that they have a “pay if you cancel within 48 hours” policy, and my therapist said to tell reception if i need to cancel that i should not have to pay, but that if i don’t say i will be charged as it is an automated system in another office. I don’t want to be in a situation where i feel i have to push myself to go when not well, and therefore not benefit from it anyway, or end up paying for nothing… Suddenly it is all getting complicated!
So since then, (as the next appointment she had was for three weeks later) i have been researching alternatives… Yesterday i had a woman come to the house (people who do that are very few and far between i have found) who offers Spinal Touch, Reflexology, Indian Head Massage, other massage etc etc. I had Spinal Touch, as the description sounded similar to cranial osteopathy. This woman charges £25 per hour – hurray! She actually stayed for nearly an hour and a half yesterday as was explaining all about what she would do before she did it. It was “interesting”!! It was not very relaxing, even after the initial explaining everything in minute detail which i found quite draining to concentrate on. I had to stand next to a plum line and was drawn on with a felt pen, then i lay face down and she worked on my back, but not in a massage way, literally just “touching” and a bit of rubbing on certain points with one hand, while the other hand was basically a thumb pushed into one buttock crease (on the inside – bordering on very intimate!) as like an earth wire. The energy from my dodgy vertebrae is supposed to to go up her arm across her shoulders and down the other arm back into my “meridian” (or bum as it is also known). Also i had to give constant feedback about each vertebrae and how it felt, when it felt better etc, so not even very relaxed, which to me is a large part of the benefit of alternative therapies, that deep relaxation. On the other hand, maybe my back and shoulders feel a bit better today. I am trying to see how they are over the next couple of days before making a judgement, but it was a bit too weird for me, the more so when i look back on it! It is based on ideas of acupressure and chinese medicine (flows of energy etc) as well as other things, and after my good acupuncture experience i am trying to have an open mind (but not being very successful). If anything it has just confused me more. I am thinking i will give it another go next week and then maybe get an indian head massage or back massage (she may combine – seems quite flexible) and see if my head tensions ease at all with a bit of attention.
So there we are. Cheap and convenient, or expensive, inconvenient and possible more effective; but who knows?
The third option which i may try anyway is Amitriptyline, which the ME/CFS specialist suggested may help me when i saw him on Thursday. It annoys me that there is never any discussion of what is causing all my muscles to tighten a vice-like grip around my upper body day after day, or what i could do to ease them naturally (exercises, stretches, better posture…) but i should know better than to hope to get anything more than the “tablets for symptoms” approach on the NHS. I can see why so many people turn to alternative therapy, i am just wondering (as i don’t know what is causing my problems) if they can ever do anything more than give a very temporary relief, as the underlying causes are still there, just as they are with the pharmacological “solutions”.
Ho hum, these things are meant to be relaxing not create more stress! Decisions are not my strong point these days…
p.s I am going to cancel the next cranial osteopathy appointment (NOW!) and complain about their stairs again… i feel i shouldn’t go back just on principle 😉 it’s just not good enough!
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…