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This is a quick post, not the one on leaky gut syndrome that I promised you! That is not finished yet. This is just to show how ridiculous the lives of chronically ill people can be! It is no wonder I get so little done in a day and am mentally exhausted! This stuff takes a lot of concentration…

 I have started taking digestive enzymes recently as described in my previous post. I have added a high protease (systemic) enzyme to take between meals (to allegedly reduce bodily inflammation and pain among other things). I have also started taking L-Glutamine (though I suspect it has caused diarrhea so I have paused for now to test that, but let’s assume I am taking it. I also read that drinking fluids should be avoided so as not to dilute the enzymes in their very important work, and that if you have low stomach acid the dilution is not good (I don’t know if this applies to me but it could and seems likely) so I should not drink for an hour before meals or two hours afterwards. The protease enzyme is the same rules, but only half an hour before meals is ok. I also take an anti-spasmodic and other medications not related to my digestive issues. I also have in the fridge two probiotics which I plan to start taking soon. I generally need to drink about 4 litres of fluids per day (that’s up to 4x what people usually drink unless it’s hot weather) to help with POTS symptoms.

So let’s see what a day looks like if I do this properly:

8.30am wake up and take my usual medications with water (most of my glasses of water and cups of tea are 1/3 litre).

9am Get up and have a cup of tea. Take vitamins including zinc (good for digestive/gut health). I really should take more vitamin C too – note to self – it apparently helps kill bad bugs in the gut.

Also put Alpha Stim electrodes on my upper back as I do every day (my pain relief machine).

9.30am take antispasmodic and L-Glutamine

9.45 take digestive enzyme (as it is a veggie capsule I read it needs time to dissolve so to take it a bit before eating, but other places say to take at the same time as food, so I am confused about this one. Let’s say 15 mins is ok for now.

10am take probiotic (type one) and eat breakfast

Also move electrodes on Alpha Stim to anywhere else that hurts or just to another position for upper back/shoulders.

11am change setting on Alpha Stim to CES and put earclips on

12 midday take systemic enzyme and wait half an hour for it to get into my system (think this way round makes sense or I would drink then have to wait an hour?)

Alpha Stim done.

12.30 take usual medications and push fluids for half an hour, perhaps 1 litre.

1pm stop drinking and wait an hour before food

1.30 take antispasmodic and L-Glutamine

1.45 take digestive enzyme assuming it takes time to dissolve 

2 – 2.30pm take probiotic (type one) and eat lunch

Go to bed and rest/nap

4.30 wake up and take systemic enzyme

5-5.30pm take usual medications and drink fluids – 1 litre

6pm take antispasmodic and L-Glutamine

6.15 take digestive enzyme

6.30-7pm take probiotic (type one) and eat

9pm drink – not much as getting late and don’t want to be up all night – 1/3 litre

10pm – take usual medications and probiotic (type two). Make way to bed.

So I have only managed to fit in 3 litres of fluids, plus a bit with tablets. I could take a jug and drink more before getting up. This regime also prevents me eating little and often as I prefer and forces me to make sure I have eaten enough in one sitting to last me 4 1/2 hours. This goes against advice for managing IBS and POTS symptoms. I also really like to finish a meal with a cup of tea, but I have known for a long time this is not meant to be good if you have digestive issues.

I have tried the systemic enzyme for a few days and that was fine although my stomach seemed to be getting more sore each morning so I am resting it before starting again as is advised. I am unsure about the L-Glutamine but will try it again in a few days. My plan is to do this properly in a couple of weeks and go sugar-free for that time to see if I get any symptoms of die-off to test for a yeast overgrowth. If I feel fine (normal for me!) than it suggests that yeast is not a big issue for me. The more I read about Leaky Gut Syndrome I suspect it may be an issue, despite being quite skeptical, but I think not too extreme for me. I hope so anyway. Even if I cut out all sugars I will still have to eat the diet that I can currently digest which is not very low GI so there will be sugars present (rice/potato) but it will be reduced and that should trigger some reaction. I think taking the probiotics at this time will maximise their efficacy as the bad bugs will be dying anyway –  ha ha evil laugh.

Someone had generously given me some Stevia to use during my sugar-free fortnight. My plan is to make some chocolate biscotti (I have found a recipe) so that I can end meals with something sweet and also sweeten my breakfast as I will have to switch to unsweetened soya milk (yuk!).

Sorry for the lack of links in this post – I really have no energy/time for it. Please leave a comment if anything is unclear – my next post on Leaky Gut Syndrome (coming in a week or two) should clarify it all anyway!

*I do not advise anyone to undertake this strange regmen, I know not how useful it will be, only using myself as a guinea pig, as usual…

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?

Hello all,

I am not sure what to write about today, or how much to say. I am bored of writing how I am, which symptoms are bad and so on, though I know it serves a purpose for me in terms of tracking my symptoms and health, which is one of the reasons I do blog. I am bored with it though, and so it seems is my partner, understandably. We want to escape the never-ending discussions of how I am, which parts hurt and so on. But how? I honestly do not think it is possible.

I do not need to tell you readers who are also ill and living with other people the difficulties of being in any relationship when there is an unwanted entity (the illness) hovering around affecting everything we do, or more usually cannot do. Things are ok, and we are coping but I am just feeling a bit emotional at the start of this year.

As well as wanting me and more especially my partner to have a break from it all, I am deeply worried about a friend of mine who is in hospital. I have heard from her dad that she has had an emergency operation and is very unwell, but nothing for a few days and I cannot help but think about her and her start to 2011. She has not even been able to open her Christmas presents yet. She is on my mind a lot.

I think I am also just in recovery from going away at Christmas. I feel a sense of achievement and adventure at having gone away – I spent a few days with my partner’s family. It was good and I am very glad I went in many ways. I was made to feel really welcome and they tried really hard to accommodate my needs and it was nice to feel part of something but it was also pretty hard for me at times.

The main issues were the travel (which took 4 hours on the way there and 3 on the way back; even as a passenger that is really a lot for my poor brain to cope with. I find it very challenging neurologically to be in motion and to have such a lot of visual stimuli rushing past at the same time); the heating, which despite other people saying they felt cold was on really high and it was the hottest house I have been in for a long time (which obviously is really bad for me in terms of POTS as it means my blood pools more easily and less gets to my brain which makes me feel worse and have lower stamina and more neurological symptoms, like tolerance of noise…); and also the noise!

When there is noise my stamina is very limited and the combination of Xmas music on a loop and/or a tv turned up loud for some of the family who can no longer hear very well (and refuse a hearing aid) as well as the conversation of up to twelve people on top was at times hard to bear. Added to this was the noise of a house full of people when I was trying to rest, especially when a few drinks had been had, despite my ear plugs! People really did try so I am not blaming them, it’s just that normal festive behaviour and this illness do not mix. It is not like everyone should sit and shiver in several jumpers in silence just so that I can “do” Xmas!! It would not be fun for me or anyone else that way.

Overall it was a successful visit and I would take on the journey again when things would be quieter and hope that perhaps I could be able to leave the house when there next time to explore the city a little. It did feel strange to just be in the house all the time and not be able to situate it or explore; which seems ridiculous as I rarely go out to explore my own city, but when you go somewhere new I suppose you feel it more keenly that it is the normal thing to do. I know there were art galleries within a ten minute radius, and that hurt!

I have been feeling a bit stir-crazy actually and the trip away almost added to it for the reason given above. It gave me a sense of adventure if anything! I have not left the house much for a long time, other than for appointments, and the weather has been a big part of this. It has been just freezing with snow and ice everywhere – hardly wheelchair-friendly. I did go over to see a friend before Xmas and that was really nice, though it felt so surreal and I realised it was nearly a year since I had visited her home. She has had to visit me most of the time in the last year. Another reason is that my partner is just so busy and there is no-one else to take me out. I really find it hard to go anywhere without my wheelchair and that means being accompanied. I need to perhaps just take a taxi sometimes and sit somewhere interesting and comfortable for a while, but finding somewhere comfortable (in terms of chair, but also noise etc) is quite tricky.

Good things already planned for this year are a lecture about printmaking at a local university at the end of March. It is just an hour so I am going to give that a try if I can. Also we have booked tickets to see Iron and Wine in concert, which is also not for a while, but something to look forward to. Some of the most memorable and best things I did in 2011 were going to concerts, which has become easier now that I can sit in my wheelchair, so I hope to keep finding good people to see this year. It is great to go out with my partner and share such experiences with her. We don’t do enough fun things together.

It is my birthday this month and some time has been kept clear to do “something”. It is not yet clear what I will be up to doing, or what the options are but I am looking into it!

I hope to continue with my art immersion at home (see blog post on my creative blog) and finish the painting I am working on and move on to the other many creative things I want to work on. So many ideas, so little energy and ability! Never mind, art is a good distraction from illness. I also want to read more. I have got a Kindle for Xmas, though I had it early, and I am really loving it and how much easier it is for me to read with than a real book.

I was planning on writing a thorough review of the book How To Be Sick by Toni Bernhard, but I am taking advice and guidance from Michael Nobbs in his new ebook Sustainable Creativity and I am keeping my tasks simple and manageable. If I write a short review I can get it done today and have a sense of achievement, rather than not finding the energy for days/weeks and having the task hanging over me. He also encourages us to not care if something is not perfect, allowing us to get on with our day. This review will not be well honed but I hope it will be good enough. I am not even going upstairs to find the book to refresh my memory before I start!

In How To Be Sick, Toni combines the experiences and challenges that chronically ill people face day-to-day with Buddhist teachings in a very effective and seemingly effortless way. It does not feel like the chronic life is being forced to fit into a paradigm, it is as if these two things were meant to be thought about together.

I found that I did resist buying this book, despite the good reviews. As someone with very longstanding ME/CFS  I have become wary of self-help advice. Often it is forced onto us, inappropriate, claiming to cure, patronising, making assumptions about us and so on. Or we seek it out ourselves and get “self-help fatigue” on top of the illness itself as we work so hard to challenge ourselves, examine ourselves and change ourselves and just end up twisted in knots feeling no better, calmer, stronger or healthier. We then feel a failure and I for one no longer take part in these activities. I suspect I am not alone. Who, when chronically ill, has the energy to keep constantly looking at themselves in such an intense manner?

So against this backdrop, Toni has bravely approached the problem in a new way. It really does feel so refreshing and when I actually picked up the book and started reading I felt no resistance. It is written in an easy to understand, absorbing, humourous way (I laughed out loud at a bit about Sarah Palin!). Most importantly she takes us on her personal journey and explains how difficult she still finds some of the practices, rather than saying she has reached some level of perfection (enlightenment!) and therefore effortlessly copes with all day-to-day stresses and restrictions on her freedom. Of course she doesn’t, she is only human, and that approach allows us all to have a go, Buddhist or not.

It is really refreshing to read the examples she gives as I had also found myself in these exact same situations. Perhaps it is because Toni has ME/CFS and POTS as I do, that our experiences are so similar, but I expect that actually the experiences of chronically ill people are more universal, regardless of our specific conditions, than we realise. Which begs the question: Why is our experience so marginalised and misunderstood, even by people whose job it is so see us regularly, ie medical professionals? (See previous posts for where this issue is coming from for me!)

I have occasionally done Mindfulness of Breathing meditations over the years, in phases. I first started before I became ill when a monk came onto campus once a week when I was at university to do a guided meditation. I found very powerful and energising at the time. While it is harder to do in a body which is constantly uncomfortable and without your own monk to guide you (!), I have found that being guided by a recording is also good. The book made me see this practice in a new way and I feel encouraged to keep doing it and getting more and more from it.

Lastly I would like to say that even if you know nothing about Buddhism, this book is very accessible. It has sparked an interest in me to look at it further, especially the specific concepts that Toni works with in the book. (Michael Nobbs actually posted a link on his website to Audio Dharma and a talk about Embracing Imperfection, which echoed some ideas from Toni’s book. I just went to find the link to post here and see that Toni has done her own recording on the site! Small world.) 

What really felt encouraging for me was that although I had not heard of many of the Buddhist ideas in the book, I found that I could relate to the practices. I realised I have been doing some of them by myself. For example, I do enjoy the joy of others more than I perhaps did at the start of my illness, even when I cannot participate in the source of that joy (although there are some people with which this is easier to do, than with others who make no acknowledgement of your own situation! I still have work to be done.). It is nice to feel that you have made some progress yourself inadvertently just by living with illness so long.

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.

yes, dangerous territory here, but lately i have been thinking of things that i would like to do and places i would like to go.

This is not “a list of things i will do when i am well” it is just a list of things i want to do (both seem pointless really). The fact that i would need to be much more well to do them is besides the point, i can’t help what i want and what i (would)enjoy, however out of reach they all seem to be.

A few things have set me thinking recently, partly hearing what my (healthy) friends are doing over xmas and new year and realising (again) how far away from being able to do these things i am; and partly thinking about my birthday which is a few weeks after xmas and what we could do to celebrate has made me a) think about what things are possible and b) what things i would really like to be doing. There was the suggestion of going away somewhere nearby for a long weekend  as we often have gone somewhere at this time of year and i looked at options but soon realised that either they were beyond me and likely to be depressingly hard to cope with and therefore not much fun or such a compromise that it would just remind me of how limited my options are. So we are back to playing it by ear and perhaps going out for an afternoon if i feel able to try something. I am researching possibilities for different levels of adventure/ability.

Anyway, back to the list, in no particular order and i am sure missing lots of things out!

  • Go to Cornwall
  • Go to Moray Firth to try to see the dolphins (second time lucky?)
  • Go to Plockton & Skye again
  • Visit Friends in Barcelona, Australia, Wales, elsewhere in England (more than one!) – yes i am inviting myself…
  • Go to Kew Gardens, Natural History Museum, Victoria and Albert Museum, Chelsea Physic Garden, and many other places in London i have yet to discover I am sure
  • Go up in a hot air balloon
  • Study something creative, preferably a mixed course of arts/crafts/photography/design/writing etc
  • Study horticulture at Kew? Not sure if i really want to go the whole hog on this but how cool would it be?
  • Go up into a tree top with ropes and harness
  • Go somewhere wild and beautiful and be able to walk around all day taking pictures/drawing and soaking it all in
  • Be able to work on something (artistic project) all day/week and become totally absorbed in it, lose myself and also to produce something that means something to me
  • Have a party and have lots of people who would come and have a laugh and have interesting conversations all night
  • Do some things as a couple: meals out, holidays, days out, cinema, pubs, live music, anything fun really that isn’t sitting watching tv
  • DIY and household jobs – oh, just to get stuck in!
  • and many more that my brain can’t even contemplate right now…

I have avoided posts like this before, though i have read ones that others have written. I suppose i am feeling low and just wondering when i will be able to accept this properly. Will i always struggle emotionally and feel i am missing out on “the life i could have had”? I am not sure it even IS that any more, maybe i am just wanting more that i am getting, and that seems wrong: I should be focussing on the good things i do have and it annoys me when i can’t just do that. It all seems such old territory but it still comes over me in waves, even if i am not grieving so keenly for my healthy self as i have in the past. I think the last few months have been perhaps harder than i expected and that has taken its toll. I find myself questioning if it IS this bad or am i somehow being a drama queen? There is also a sense of unreality and distancing myself from how bad things are, which i probably a protective mechanism but i feel concerned for my mental health when everyday experiences become surreal.

As my mum says: “sometimes i think i think too much!”.

The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.

I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!

To all my lovely friends and family,

 As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative: 

I would like to propose that instead of giving gifts we just exchange cards. 

If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.

 If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!

 I hope this is ok with everyone, thanks for your understanding,

Ashy xx

 

My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid. 

The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/  (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean. 

ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)

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

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

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

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

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

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

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

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

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

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

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

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

ME/CFS Awareness

ME/CFS Awareness

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