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The last few weeks have been eventful.

I saw a Pain Specialist on the NHS a few weeks ago and it was a traumatic experience for me. I was not going to blog about it as it is a bit complicated but I will say that firstly I was very distressed by my level of cognitive function during (and in the days after) the hour-long appointment. I still have a very patchy recollection of what happened and what was said, complicated by my partner’s version of what he said (and what he meant by certain things) being different to mine, so in going over it together to clarify it I was further confused and my memory warped. Secondly, the man himself was quite strange and I found his style of communication and approach not to be one I could work with. I am still unsure what exactly he was offering me,  though I have been told by others who have been to similar things and by my CFS specialist that it is CBT-based stuff though he seemed to be dressing it up as something more. I was open to trying that for pain, which is why I went as I suspected that was what was on offer, but unfortunately he kept asking me questions and saying things that covered not just pain but my illness as well and I could not handle the overly psychological emphasis where that was concerned. He said a couple of things that were very dismissive of my physical illness and if he did not come from the “CFS is a false illness belief” school of thought he frankly should have enough nous to know it would be a sore point and make that clearer… he did not. I have been so scarred in the past that I cannot handle that kind of territory, partly as my cognitive problems mean I cannot challenge things that are said at the time or be assertive enough to make sure I am understanding things correctly if I am over-reacting. To get over this history and aversion even if he could help me with pain management would take a lot of work and feel like a fight, and I do not have the strength.

I have also just seen my CFS specialist. It has been over two years since I last saw him as I see the POTS specialist regularly so there is not really a need to see both. I wanted to talk to him about a few things. We talked about my neuropathic pain (something I did not get to ask the pain specialist about properly in the whole hour as he liked to talk and had his own agenda). I asked him why I have it, if it is common with ME/CFS, if it is a sign that I have fibromyalgia and if I can expect it to get worse (if it is degenerative).

His answers were: That is it part of the neurological changes that are responsible for the over-sensitivity to light, noise etc in pwME (he calls it CFS of course) and that this is just over-sensitivity to touch. I am very over-sensitive to touch, certainly, and cannot be touched much in everyday life, or only in certain places and in certain ways. The pain is triggered by touch, whether that be of air, fabric, moisture, heat, cold, my own hair or dead skin, etc etc, but it seems to me that touch-sensitivity and this pain are a bit different but neurologically they are obviously very connected… anyway, next question:

He says, yes, that yes it is common with CFS. I have never spoken to anyone with CFS that has these symptoms as extremely as I have, but maybe they do exist, or perhaps he does not realise how extreme my case is? Some people with Fibromyalgia seem to share these symptoms but again I have not spoken to anyone who has it exactly like I do… granted, he sees/knows more people than I do! (I also asked about my Trigeminal Neuralgia as that is also nerve pain I wondered if it is connected. He said it is not associated with CFS and it just something I happen to have and will continue to have on and off).

As for if it is Fibromyalgia (FM), he says that he sees FM and CFS to be like a piece of string with pain being predominant on one end and fatigue being predominant on the other and that people are somewhere along that spectrum. He said there has been one study which suggested they were distinct entities but he is not convinced. He says that many people with CFS have fibromyalgic pain to some extent. I would suggest the piece of string could be a loop as some people have both fatigue and pain pretty badly!

As for the degenerative nature of the neuropathic pain he says it will be worse when my condition is worse and improve when I am in better phases… no discussion of whether my condition in general could be degenerative, but he seems to think waxing and waning is the general pattern. I have been stuck in this bad phase a while though! Bring on the better phases…

He also said that I would probably not want to up my dose of Gabapentin much more than the level I am at… the Pain Specialist said it could go higher but that whatever I do, eventually my body will get used to any pain medication and the pain will be back how it was before. There’s a cheery thought. The Pain Specialist did talk about medication and said he will recommend some options to try when needed so that may be a useful outcome from that meeting.

I was happy with the CFS specialist appointment and his answers to my questions.

Interestingly the CFS specialist recommended a book by Jon Kabat-Zinn. I have ordered it. It is about mindfulness and coping with illness and pain I think, though I am not sure how specifically targetted to that. After a quick survey of facebook friends I thought it sounded worth looking into as people said he was good. One friend also mentioned Breathworks to me and the courses on Living Well with Pain and Illness look really interesting to me. I do not think I am well enough to attend the courses in person, but would prefer that, though they do do a telephone-based version. I am going to look into it.

I am reassured by my openness to this that I am not closed to the mind-body connection or to looking at my own behaviour in order to get the most out of my life limited by illness and disability. I do not know why I over-react to the CBT stuff which may in fact just be trying to do the same thing using a slightly different approach in the end. I cannot help feel though that with the CBT stuff the people offering it to me seem to want to use it to deny my illness, not to start from a basis of “yes, you are living with a physical, likely permanent and pretty severe illness, but let’s look at how you can live best with it,” but more like “You are focussing too much on your physical symptoms and making them worse, and frankly we think that much of it would disappear if you just did this CBT (and were open enough to it) and you would live a much more normal lfe.” I know that how we respond to our illness and pain, how we think and how we react can affect our experiences but there is a huge limit to the curative effects and this is the issue I have, I think; the basis and assumptions on which this is offered. The breathworks video I watched on the site showing an interview with the founder of the company shows that her attitude is much more about accepting the reality: I have pain, I have disability, I have illness and that is unlikely to change. Then we can move on to work with this reality.

Am I being over-sensitive to the Psychologist’s approach and denying myself something free and useful on the NHS? I just know it causes me so much stress to engage with it, it is probably not worth it anyway… it looks like I will be finding my own way.

One thing that came up in the Breathworks video is remembering a happy/pleasant experience in order to take yourself away from current distress. I tried it this morning when I woke up too early and was in tears in seconds. I have tried this before with similar effects. It seems that the grief is still just below the surface and will not go away despite having now been ill and supposedly processing this fact for twelve years! I think it is harder to grieve when things fluctuate and change and nothing is certain, or we grieve for what is lost, then we become worse and have to start the process all over again. That is how it feels anyway; constantly adjusting to a new reality. Well not constantly, as nothing much has changed lately, but quite often. My partner suggested thinking of something happy from my life now, rather than picturing something from “before”. I very wise suggestion and perhaps I need to choose something that is still possible, at least while it seems I am feeling so much grief.

I need to work on acceptance, though I do have quite a lot by now. I am not sure the grief necessarily leaves us just because we are accepting though? I certainly think acceptance is easier when we understand what is going on and I think I am getting a better understanding of how my neuropathic pain fits into the bigger picture now.

One thing that really made me angry in the Pain Specialist appointment was him asking about what I wanted to do with my life and how I saw the next decade etc. This always annoys me. How can I express in a sentence all that that question summons to the surface? How can I express how I get through each day and try not to make assumptions about the future? How can I endure sitting there and having my levels of acceptance and hope judged by another stranger who clearly has no idea what a loaded question he is asking? How can I genuinely answer a question I have been asked it too many times?

I answered after a long silence with a bit of waffle, a shrug and a “que sera, sera!” I was not functioning well cognitively and just could not come up with anything more lucid, but looking back that is how I feel: what will be, will be. I do not believe that hope will save me, I believe in acceptance. I may have hopes and dreams and they are important but I am not about to share them with him or anyone like him who cannot see the reality of my illness and is already judging me before I step into the room, or at least has not got proper knowledge of my illness on which to base his assessment.

Defensive? Probably. I am trying not to care and not to over-analyse myself, but that is also hard not to waste energy on… is my confidence another casualty?

Please support a new project “Art 4 XMRV” by buying Greeting Cards, Matted Prints, Laminated Prints, Mounted Prints, Canvas Prints, Framed Prints and Posters. The images are donated by artists who have been affected by ME/CFS.

Art 4 XMRV is a collaboration between artists who have all been impacted, directly or indirectly, by Chronic Fatigue Syndrome also known as Myalgic Encephalomyelitis (CFS/ME). Leading healthcare professionals have stated that symptoms can often be more severe than late stage AIDS, Multiple Sclerosis and Cancer. This illness is a great deal more than ‘feeling tired’.

In October 2009, the Whittemore Peterson Institute in Reno discovered, thanks to their groundbreaking research, that up to 90% of all people with CFS/ME and up to 7% of the healthy population were infected with a recently identified retrovirus called XMRV. XMRV has also been linked to Autism and Prostate Cancer.

Once a retrovirus infects a person it becomes part of that person’s DNA and stays with them permanently. HIV is the most widely-known example of a retrovirus. It is estimated that over 17 million people worldwide currently suffer from CFS/ME and they are all looking to the Whittemore Peterson Institute for answers. The sad truth is that the WPI are not being supported by Government finance. Public funding is therefore desperately needed for further research and clinical trials.

Art 4 XMRV is an attempt to help raise money for the cause. 100% of all money earned through sales will be donated to the Whittemore Peterson Institute.

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.

So, i went to see the POTS specialist this morning for my 3 month review and this involved setting my alarm for seven am… i have to take my midodrine then wait half an hour before rising so i lay there until half past trying to convince my body to rouse itself… it was hard. I had a little breakfast then my partner drove us to town. As it happened the rush hour was lighter than usual and we got there quite quickly, but happily i was seen a bit early too.

I was told last time that she may give me another drug to try on top of Midodrine when i go this time, but had not told me what it may be. I had a bit of a nightmare thought a few days ago that it may be SSRI anti-depressants as i have read they can help with POTS, and also i know that beta-blockers are used too (they have side effects which don’t seem good for a pwME). I started remembering all the side effects and experiences of being on anti-depressants and started to worry about what to do if this was her next plan for me. One the one hand, if it would help the POTS is it worth trying again, despite my negative experiences and associations? I was not sure.

But thankfully all she suggested was upping my current dose again and taking more of it earlier and not bothering with any at tea time. I am happy with this as although i have not felt great the last three months and the first two months after upping the dose last time i really didn’t think it had made a lot of difference, the last few weeks i have felt stronger in myself and think at last it could be midodrine having a positive effect. Month two was plagued by wedding recovery and virus, so that could have delayed any awareness of it working being apparent.

I did ask her what the other drugs may be that we may try in the future. She reassured me it would not be an SSRI, but a new drug to slow the heart, or Florinef, which i have heard of. So i am happy to hear that.

The meeting was over pretty quickly and i came away feeling like i had not said something. I often feel like this though, especially when i have been building up to a meeting for ages then it is over so quick and i don’t trust my brain so much these days to remember everything either.

I did not mention the urine test i took, but more importantly i did not mention the muscular pains and tensions, headaches and skin tenderness that continue to plague me. They are more ME related than POTS related but who should i talk to about them (if anyone)? I am no longer seeing the ME specialist as he said i didn’t need to see them both and the POTS specialist deals with ME patients/diagnosis etc. but when i see her she doesn’t ask about those things. My GP would probably not have the specialist knowledge about ME and I have never got much useful out of them about specific symptoms before. I no longer see a particular GP, i just take lucky dip when i go as i have given up on the one i used to choose and have not settled on a new “favourite” yet. I only really go for sick notes anyway as my employer still wants them(!). I think i will see if these symptoms improve over the next three months and if not i will make a mental (and paper!) note to mention them next time i go. Life would be much more pleasant and productive if these symptoms were not so often present… I think the POTS specialist thinks that all my symptoms will improve as the POTS is treated and improves – this has largely been the case, but has affected a few dramatically and some not so much.

We shall see, as always…

I have filled in the patient questionnaire and sent it off for the All Party Parlimentary Group (APPG), filled with my experiences of the services i have received for my ME/CFS…

find details on the ME Agenda blog: http://meagenda.wordpress.com/

Apparently there are criticisms of the way it is being carried out and not all ME charities are supporting the enquiry, but i felt it was important to get my voice heard anyway. The more people that read about our experience, the better, and it is a public record.

Even if you have not received any “services” as such, or do not have access to any of the CFS centres they set up, it may be worth telling them that and of your experience of the NHS? There is still time – deadline 20 July: here is a link explaining what they need: http://meagenda.wordpress.com/2009/06/29/rime-nhs-services-inquiry-notice-6-26-june-2009/

and here is a link to the actual questionnaire: http://meagenda.wordpress.com/2009/06/15/appg-on-me-inquiry-into-nhs-services-patient-questionnaire/

balloons
This last weekend I went to my sister’s wedding. My partner drove me and the dog the five hours each way to Wales and we stayed with my mum, which was really good, except for our room being on the third floor!!

 

I was quite worried about going as my levels of energy and stamina have been so low recently and the thought of the travel, talking to so many people, getting through the wedding day itself, potential payback and just everything about it was very daunting.

BUT it went quite well. We came back on Tuesday and although i don’t feel too good, ache all over quite seriously, and seem to be getting a cold, and can feel there are still days of recovery to go; I can say i have survived!

There were some very dodgy moments: on the wedding day i felt pretty bad in the church. I already had “permission” from the vicar not to stand for hymns etc (which on the one hand seems silly as if you can’t you shouldn’t need to get permission, but as i was in the front row it did make me feel more comfortable with not getting up to know that most people knew why) but i had to not sing as i was so lightheaded as well. After the service we went to the reception and i could hardly hold my head up and keep my eyes open until lunch came at half past 3! I ate it then left for bed before the speeches. I could not really rest properly but had two, one hour rests with some food in between, then at 8pm went back to join in the evening do. I actually got a second wind and really enjoyed it: talking to people, meeting some of their friends i had heard about but never met, as well as some of his family and actually DANCED with my sister (for half a song – maybe 2 mins) but my spontaneous act made her cry, which set me off too and it was a good “moment”! She has ME as well, so it meant a lot to us to dance together!

My body seemed to find some energy or be running on adrenaline for several days, which was very convenient, if a little unwise. It was nice to feel it perform for the occasion, even if it goes against all the pacing rules. I could feel it waning by monday, as even though i rested well on sunday i still felt ok. The journey back was hard. It went fine and the traffic was fine, it was just my body and my brain that were not and i found it very hard to cope with. It was like being strapped to the front of a torpedo and rocketting forward out of control not knowing what i would hit, but feeling very much in danger. Not being the driver can feel scary, even when i do trust the driver as motorways can be scary places – but when my brain is not processing information properly i think it feels much more scary. I would have been happier on a horse and cart going about ten miles per hour – it would feel less violent. I also found i was pushing my feet into the floor of the car when we were braking as if to help us stop subconsciously. Even when i realised i was doing it late into the journey (leg pain was a giveaway) i found it hard to stop… just so exhausted and wound up.

So i think i have not perhaps even properly crashed yet… i am in pain and i am spending a lot of time in bed but i am ok. I hope this is it, but i fear i have a cold so this week may not be much fun. At least i can sit in the sun a bit if the forecast is right! I am so glad i was there and took my place at a family event.

It was lovely weather when we were there and the day after the wedding lots of hot air balloons flew by, which was a really nice surprise! I love the sound of them and have always wanted to go up in one. It was nice to have that random surprise event too!

On Thursday i had a full body massage and (possibly) learnt more about my body than i expected! Certainly i am asking more questions!

It was much needed as I had had a bad headache for 3-4 days and even when that improved i was left with so much tension in my head, neck and shoulders that it was still painful to touch many areas. I often/always have these tender points, in my upper back, shoulders, jaw, scalp etc. They are little knots of pain and i am unsure what i can do to ease them. Anything which helps seems very temporary and they always return to their previous level of tenderness within a short time. These symptoms were at their worst before i started to take Midodrine, which did seem to ease the almost nightly headaches (as more blood was flowing to my upper torso and head – which is kind of useful to have!), but every now and again they do resurface and there is always that underlying muscle pain and tension. I am wondering if the higher dose of Midodrine i am on is causing this clenching up of my muscles, (i did have worse upper back pain the last time i tried to up the dose) but of course it could be a myriad of other causes…

So that was my motivation for going, as well as the fact that i have a busy weekend away coming up (my sister’s wedding!) the prospect of which is causing me some anxiety, as travel and social situations always do, due to how difficult they can be to take part in and the impact they can have on my health for weeks afterwards – there have been moments where i have doubted i am well enough to go at all, but i am feeling more positive now, and looking forward to actually attending a family event for once!

I have not been for a massage for a long time and it was so good. As always when i go, i realise how much it was needed, discover areas of pain and tension i was not immediately aware of, and think how much it would help me to have a massage much more regularly. I do not know if that would create any long term improvement, or prevent my muscles getting into such a state or if the relief is just temporary… I think it would take a lot of massages and more than i can afford anyway!

When the massage started she did my face and front of shoulders and upper arms, and immediately on touching my upper arms, said there were a row of knots down the front (it was very sore there with even a light touch, which i have been aware of for months). She asked me if i do weight training! Apparently they are “Weight-Lifters Knots”!! I did laugh at that. I explained to her that i struggle to lift even small things, like the kettle, and that my muscles do not behave like normal muscles, as they quickly lose power and energy and over-react with pain and tension for a long time if “over worked”…. She was very surprised and said that she would have thought i was a weight lifter if i had not told her… She asked again to clarify: “so you couldn’t go to the gym and lift a few weights?” “Er, no, really, most days i cannot get as far as the corner shop, i rarely leave the house… i could not get to the gym, never mind do anything when i got there” or words to that effect… As keen as i am to educate people about ME and spread awareness it is quite a pain to have to use time when i am supposed to be relaxing (and I am paying) to explain this stuff but i answered a few more questions (no, i don’t just fall asleep all the time, i am not just tired, i am ill… etc etc blah blah blah).

Anyway, it is reassuring that my muscles appear normal in size etc after 3 years of pretty severe ME and ten years in total of being unable to do any kind of “exercise” as the term is generally understood, though i was more active for several years than i am able to be now. It is something which has baffled doctors and led to people being disbelieved and denied benefits (still are, if you read the guidelines for decisionmakers for DLA on ME/CFS which suggest there should be muscle wasting in evidence to qualify as severe… will find link if anyone interested, but can’t be bothered now!)  as doctors would expect more muscle wasting considering the lifestyle we claim to lead. There have been different theories about why it only happens in people who are very severely affected but it is not fully understood how our muscles maintain their tone.

It seems that my muscles are reacting as if they are overworked. In a way they are (yes i am a closet weight-lifter!): As i say, they struggle with everyday tasks like lifting a kettle, moving a chair, lifting a watering can. What is even harder and has a more long term effect is anything repetitive, like rubbing to clean the bath before i get in, chopping something, rubbing my scalp when washing my hair, and i generally avoid this kind of activity when i can as it leads to muscle pain, long term aches and cramping, as well as adding to a feeling of general weakness and exhaustion afterwards. Some days are better than others, depending on my general state and if i am already in recovery from something or struggling in general.

So far, so much i already knew. What i found intriguing was that, as well as my upper arms, my lower legs at the sides (from ankle bone up, on outsides of legs) were also incredibly sore to the touch and knotty under the skin. I have been having really sensitive skin in these areas (upper arms and legs) as well as itching. My legs in that area are so sensitive that if something touches them unexpectedly (like in bed) it is like a bolt of electricity running through my whole body. I have a real problem of certain areas of skin being so easily irritated and therefore often itchy that it affects my sleep as well as what clothes i can wear. I have to “sweep” out the bed before i get in to get rid of any tiny bits of dirt or dead skin or whatever that has been carried in from the floor, as any of this stuff (which i call “Gravel” as it is so sharp to me, though tiny) can cause a major episode of itching.  I find if there is dead skin on those areas it triggers itching and if i moisturise after a bath and the dead skin rubs off (gross i know, but it does) the itching stops, despite me having rubbed it, which is usually something i avoid as it can trigger the itching. I was starting to think that my nerves were over sensitive and that i had a problem with my skin and pain, though i had no idea what to do about it. This may be partly true but the massage therapist seemed to think that the knots and tension in those areas may be partly causing this extreme discomfort i am having in the skin of these areas. I suppose it makes sense as that underlying tension must affect the skin and could make it more tender and sensitive in the whole area surrounding the problem.

I have heard varoius people asking about skin itching and if it is a symptom of ME. There was a letter in a recent ME Association magazine, and one on a message board i saw recently too. They caught my eye as i have had these problems for a long time. The consensus seems to be that, no, itchiness is not a symptom, but it seems to me in bodies that are riddled with problems that there can be knock-on implications causing almost anything!! (what a cheery thought). My sister has ME and also has problems with itching and sensitive skin.

I have another problem of itching which may or may not be related where if i have a shower my lower legs in particular always react very severely and start to itch. It can last for several hours and all i can do is sit in bed and stroke the skin gently which seems to confuse the nerve signals a little. It can be so painful that i am in tears and is obviously exhausting and distressing. It is like nerve pain, i think the word itching does not do it justice! I never shower now, and the rare occasion that i have (when no bath available) it still happens.

It also sometimes happens after a bath, particularly if the water is not hot enough. I think there is something to do with temperature, as it seems to happen when i get out of the bath and the cold air hits my legs. It first happened when i was 13 years old, so i wonder if there is a hormonal influence. The stimulation of the shower may trigger the itching sometimes, or it could be a problem of being upright, as in the shower and when i get out of the bath. These days i have a very strict ritual around my bath, the temperature, shaving (stubble and hair seem to aggravate the problem so i have to shave every 2-3 days, which is a big comittment when ill), standing for as little time as possible and exposing my legs to as little cool air as possible on energing from the bath. I get straight into bed and moisturise with my tried and tested “safe” moisturiser, then lie there allowing any itching to subside and i cool down slowly and in a controlled manner. I have also noticed it can be worse in Autumn and wonder again if the dead skin as my (usually meagre) tan fades is irritating my skin… so many questions.

Of course i have told a few doctors about this over the years and they have no idea! There is no rash and that is where the discussion ends…

Anyway, i had another massage today (trying for a compound effect) which was great again. I asked her what her advice would be to weight lifters who have “weight-lifter’s knots” and she said that stretching can really help. I already do stretch tense areas, but kind of randomly. When my POTS was at it’s worst i couldn’t even stretch up in a chair without serious dizziness but that is better now… Maybe i should make more effort to do it several times a day and see if it helps… so many things to fit into my day though!

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

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

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

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

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

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

Maybe i will feel better tomorrow…

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.

Well, this is my first post… on my first blog… it is also my first day of taking D-Ribose…

A friend of mine bought me a book called “From Fatigued to Fantastic” by Dr Teitlebaum and she has been taking it for 3 weeks so far (see her blog: http://chronicallyme.wordpress.com/. I had heard of D-Ribose before, in Dr Sarah Myhill’s CFS/ME book: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue and thought what do i have to lose?

I have been so full of despair in recent weeks but after reading the book i do feel a sense of Hope returning, and am pleased to be doing something constructive… although it is mixed with the feeling that i will not be able to fully try everything in the book (which is american) as a whole section is about hormones and taking hormonal supplements and getting certain tests done, which i doubt i can get via the NHS, and i don’t want to mess about with that kind of stuff unsupervised… I am hopefully going to see a hormone specialist soon as I have noticed quite dramatic fluctuations in my symptoms based on my monthly cycle recently and my doc did not know what to do about it, so maybe i can talk to the specialist about the book and it’s contents then… finger’s crossed they are open minded.

I have ordered lots of expensive nutritional supplements, including the D-ribose so that is a good start. I will be happy to get even a small improvement in quality of life as recently my life has become very small & to get further than ten minutes from my house by foot or car is a rare and amazing event. I have been really struggling to get through each day. Things have seemed to be just getting slowly worse and worse and i would really like to see a change in direction!

I feel i have been living without much Hope recently and i am unsure if that has been good for me. I can’t help but have a bit of an antagonistic relationship with hope these days: it seems at odds with Acceptance somehow.

Up until i became too ill to work again i felt i was on a very slow path to recovery as i had never properly relapsed like others seemed to; once i did i had to face the fact that after having this illness for 7 years there was a chance that i would always have it.

It seems obvious, but up until this point (when i asked my specialist straight out how many people who had been ill this long got fully better again and he said something along the lines of “not many – you will probably always be affected by it but may improve a bit”) all medical and other people had said to me that “most people get better”. In fact only about 10% of people with ME totally recover i read recently, many others improve to a good level of functionning but not to previous levels of health and about 20% stay seriously disabled, or even decline in health. (this is just from memory so don’t quote me!).

Why do medical professionals continuously say i will get better? Do they think i need to believe that and need to keep Hope? (This is especially galling when they only offer “Lifestyle Management” and don’t seem open to even trying certain tests or treatments which could help). After 9 years some of them still say it. It is the easy thing to say, but i feel it is also important to accept my life for what it is and not be waiting to be well to live it. I try to live it as well as i can within my limits, as i don’t know how i will be tomorrow or next year. Things could get (and have got) worse!

So, i had never given up on Hope completely as i want to be well with all by heart and soul, but maybe my hopes are smaller now. I just want to be able to get out of the house a bit more, be able to socialise more, be able to cope with short drives and be able to visit friends and family on the train occasionally… These things when i read them don’t seem small at all but they would be nice, wouldn’t they?

Dr T – i hope you know what you are talking about… you got my hopes up and i don’t need them dashed again…

ME/CFS Awareness

ME/CFS Awareness

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