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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.

Yes, I have been to more medical appointments and have more on the horizon.

Last week I saw my new GP for the second time and am pleased to report that she is still as good the second time around and I will be sticking with her. She was running very late though and we were there two hours in total so it was quite a struggle. I get the impression she always runs late as is the type of doctor who is more concerned with doing a good job than sticking rigidly to the time constraints imposed upon her. I don’t mind waiting really if I will get a good appointment where I will be listened to and taken seriously, though it is not great when you are unwell and it took some getting over. She did look quite frazzled though and my partner did comment that if she carries on doing such a good job she may get burn-out! I really hope not. Outcome of the appointment is that I am on a higher dose of Gabapentin for my nerve pain and have started Mebeverine for my IBS.

I have not taken any drugs for my IBS for many years (just relying on dietary changes, as well as having tried lots of probiotics but with no real change) but after more than two years of a restricted diet it is still flaring up and painful there is no more I can do on that front, so thought I would try again with the drugs. About ten years ago I tried them all and had no improvement, but I think there is a slight improvement already after just three days this time! I need longer to really know but I think there is less pain at night-time and perhaps things are a bit calmer as I have not been playing it especially safe food-wise. The GP did suggest that I could try Amitryptaline at a low dose to help with IBS but to ask the POTS specialist if it’s ok.

So this week I have been to see the POTS specialist. She says Amitryptaline not a great idea unless absolutely desperate as it can lower blood pressure and increase heart rate – two things I do not need.

We also discussed the drug (Dilzem) that she started me on last visit. I think it has helped my stamina and also my recovery time after doing things, enough to be a trend but not in a really dramatic way. It is better than nothing. She did not change my medications this time, only the timing of one tablet and I will be wearing a blood pressure monitor for 24 hours soon to check how I am doing. Based on the results of that she will know if I can tolerate higher doses of drugs or not and adjust as required. I hope I will get to try higher doses as I know POTS symptoms are still affecting me daily and where would we go from here if not? I am not sure!

So that is it, two pleasant appointments which makes a nice change.

On a vaguely related note, my trigeminal neuralgia has been bad the last few days. Gabapentin is a listed treatment for this condition, though not the main reason I am taking it, but still it keeps flaring up. I am concerned, as reading about it, it seems that it is something that gets worse and worse over time and can become very bad. I wonder how bad it would be now if I was not taking Gabapentin? I am seeing the ME/CFS specialist in a few weeks and want to talk to him about my neuropathic pain in general and also the trigeminal neuralgia. I would like to understand how these conditions fit into my ME/CFS (if they do) and what I can expect long-term with them. They are quite concerning and debilitating on top of everything else. I also want to ask him about Low Dose Naltrexone (LDN). This is taken by some people with similar itch/nerve pains as me as well as people with ME/CFS so I think it might be worth trying. I hope he will be open to letting me try it without having to fight for it.

I have just received an appointment for the Pain Clinic at my new GP surgery. It is for next week. I have already had an initial telephone call and also filled in an assessment form for them. The doctor I will be seeing seems very intelligent and not patronising and keen to help me understand my pain issues. He did talk a lot during our phone call about Fibromyalgia and pain sensitization (or something similar to that) which is good but I don’t think the whole picture. I do not have a Fibromyalgia diagnosis and may have to take some info with me about pain mechanisms and ME/CFS as they do seem to be distinct entities and there is often much pain in ME/CFS in it’s own right… At least he is willing to talk about biological processes though, and did not sound too much like he was just going to teach me breathing exercises. I doubt he will have much to say to help me understand the nerve pains though. It will be interesting. The appointment will be an hour long, which will be a challenge in itself.

It would be nice not to have all these medical appointments. I know various people with ME/CFS who rarely bother to go (or know there is no point with their existing doctor) but I seem to have various issues that I really cannot ignore and that for which there does seem some hope of management/improvement with medical treatment. It would be so freeing to not use all my energy up in this way and just to be able to focus on going out to do things that are pleasurable or useful but it seems it is not to be. There are things I have never even brought up with a doctor for many years, or not at all, and I feel with this new GP that it might just be worth it to discuss all these minor loose ends sometime. How nice to feel that I can, even if there is nothing to be done. I am so glad I left that last GP surgery – all I ever got was a lecture and the impression that I was wasting their time or I got the distinct impression that they did not know enough to make it worth bringing anything up in the first place! Oh for the day when ME is universally understood and treated seriously… and treated effectively! It should not be a lottery just to get a GP who listens and has a “let’s try” and a “can do” attitude regardless of any actual effective treatments…

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.

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.

 Or should I say ME/CFS/FM Awareness Day, as this year I want to talk about Fibromyalgia… even though I do not have this condition.

I suspect that those of us who do not have Fibromyalgia, even if we do have ME/CFS/CFIDS do not really know what exactly it is. I know a couple of people (not that well, admittedly) who have Fibromyalgia, and still had only a vague idea of what it involved.  My basic understanding went as far as “ME with more pain” and “warmer climates help”… Recently i have been having more intense and different (for me) pain and have suspected that i may be developing some Fibro-like symptoms, so decided to look into it further.

*Please note* I have not been diagnosed with Fibromyalgia, nor am i any kind of expert on the subject, but i will try to link to information that will help to explain it better than i can. I have conducted two interviews with people who have Fibromyalgia, I will link to them at the end of the post.

What is Fibromyalgia (FM)?

 (this text taken from here (as are the “differences” and “similarities” sections below))

FM is a malfunction of the central nervous system that causes disordered pain processing, and results in pain amplification. The main symptoms of FM include:

  • Widespread Pain
  • Fatigue
  • Sleep Disorders

Other symptoms that may occur include:

  • Chest Pain
  • Persistent Headaches, Migraines
  • T.M.J. (temporomandibular joint syndrome)
  • Mitral Valve Prolapse
  • I.B.S. (irritable bowel syndrome)
  • Vision Problems
  • Urinary Problems
  • Acid Reflux
  • Allergies
  • Dizziness
  • Numbness and Tingling
  • Sensitivity to cold or heat
  • Depression
  • R.L.S. (restless legs syndrome)
  • Chemical or Environmental Sensitivities
  • Impaired Balance or Coordination
  • Problems with Memory, Concentration and Cognitive Functioning

Are ME/CFS and FM basically the same illness?

After some internet research, the consensus seems to be that NO they are not the same illness, but that there are people who exhibit both sets of symptoms.  And there may be many connections between them. The similarities are:

  • Reduced Cerebral Blood Flow to the Cortex and Midbrain
  • HPA (hypothalamic pituitary axis) Suppression
  • Reduced Levels of Serotonin
  • Non-restorative Sleep
  • Reduced Levels of Growth Hormone
  • Evidence of a Genetic Component

I recently read online about research/theories of Central Sensitivity Syndromes (CSS). These are a collection of conditions which are linked by problems with the Central Nervous System and this leads to what they call “central sensitization”. The conditions which are considered under this umbrella are Fibromyalgia and Chronic Fatigue Syndrome, among many others which we will recognise and often suffer from in tandem, such as Irritable Bowel Syndrome, Temporomandibular Disorders, Tension Headaches, Multiple Chemical Sensitivity, and several others. I find this interesting and heartening that people are looking not only at biological/neurological factors for these illnesses but also the links between them. What continually frustrates me is when i get something new and it is treated in complete isolation to my existing conditions, when, to me it seems obvious there are connections to be made, not only in understanding them, but also potential in treating them. Click here to read the articles I refer to, start on page 12).

Talking about CSS may see a bit of an aside, but i think it is a new way to look at our illnesses and the links between them. It may lead to more effective pain management and treatment for people who have several of these painful conditions, rather than treating each one as a separate entity, with a drug/treatment for each. I have read concerns from people with ME/CFS that the pain then becomes the focus and the one thing treated and the rest of the illness will be ignored. I understand this, but I have found my symptoms of pain and discomfort to be ignored and they have gone unmanaged for so long, whilst getting steadily worse. I have found that sometimes for long periods my pain has taken over my life and prevented management of other problems, such as sleep, pacing, relaxation and so on. It needs to be looked at for those of us who have pain. I don’t think it is an either/or. I also read (somewhere) that the immune system has a role in Central Sensitization, so it may not be as unrelated to other non-pain symptoms as it first appears…

So, what are the differences between them?

  • FM is identified by 18 distinct tender points (designated points on the body that are painful when pressure is applied), while CFS/ME is distinguished by post-exertional malaise (deep fatigue and exhaustion following physical exertion, which lasts more than 24 hours).
  • Substance P (a neurotransmitter that sends pain signals) is elevated in FM but not in CFS/ME
  • RNaseL (a cellular antiviral enzyme) is frequently elevated in CFS/ME but not in FM
  • CFS/ME is often triggered by an infectious or flu-like illness, while FM is usually triggered by a severe physical or emotional trauma (for example, injury, illness, surgery, prolonged stress)

Exercise: One major difference (from ME/CFS) I have found when reading about FM is that exercise is recommended and is helpful in pain management and taking in some control over pain symptoms. I have recently read “Fibromyalgia: Simple Relief  Through Movement” by Stacie L. Bigelow (2000, John Wiley & Sons, Inc) as I was looking to find some simple stretches that are designed in a way that I could do them, and which might help me to manage some of my pain and muscular tension. She explains the thing I had heard about FM before; that it is a sleep disorder. In my recent internet searches I have not found it referred to in that way so much, and I wonder if it is an outdated view to characterise sleep problems as the root cause of the condition, rather than the Central Nervous System (I don’t know, I am speculating). However, from what she says, it does seem that much of the pain is caused by the lack of restorative sleep; that people with FM do not get into a certain phase of sleep which is when the body heals itself and repairs damage to tissue. She explains that when we use our muscles, they are damaged and this is the normal process which leads to strengthening: We use a muscle and when it repairs itself it prepares itself for being used again by repairing itself stronger than it was before, which is how we build muscle mass and strength. In FM the sleep is disturbed, and is not sufficient to repair the muscles as quickly as someone without FM, leading to greater pain after activity and often an avoidance of further activity, leading the muscles to seize up. A cycle of pain develops.

Even though i do not have an FM diagnosis, I think that some of these processes are going on for me. I got very motivated to do movement and activity when I read the book, and even started to entertain the idea of actual exercise! Then I remembered which body I was in and that I have ME and POTS, not FM, and it was just not going to be possible to take it that far. But I do think moving as much as we can within our limits has to be good. I sometimes think my weak bladder and the fact that I live in a house with stairs (though we do have a downstairs toilet, thankfully!) must be keeping me in a better state than if I was just sitting/lying completely still all day, rather than getting up fairly often to go to the toilet. It is not much, but it is something. I wonder how people who have both FM and ME/CFS manage to balance the pain and the pacing, it must be harder to decide when to move and when to rest when you have both.

Interestingly I have recently been taking a new night-time medication and the result is much better sleep and my muscular pain is much, much better. I really did not think my sleep was that bad (I was certainly getting enough hours) but it seems it was not good quality, despite all my efforts of sleep hygiene etc. I will certainly be paying much more attention to this link in future and talking to doctors if this medication ceases to work for sleep in future.

Two people I know with Fibromyalgia have kindly answered my interview questions, click here to see their answers.

Here are some websites to find out more about Fibromyalgia: (please feel free to add any others you know about/like in the comments section, thanks!)

http://fmcfsme.com/index.php

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia 

http://cfidsselfhelp.org/library/about-fibromyalgia

http://www.ukfibromyalgia.com/

http://www.emotionalprocessing.org.uk/ (not specific to FM but may be of interest)

GIVEAWAY!!

If you would like my copy of Fibromyalgia: Simple Relief Through Movement, as mentioned above please leave a comment below and I will pick the winner at random (i may even use a hat!) at the end of May and contact you to arrange to post it to you. Please check back here at start of June to see who is the winner, just in case i cannot get your email from your comment!

I have found that the book is not really suitable for me as someone with the severity of ME that i have, but i will be copying the gentle stretches before i pass it on, as they do look possible. If you have FM and can manage your sleep to enable you to gradually tolerate more activity in your life, it is a motivating and sensible book written by someone with FM.

To read what other’s are blogging about for International ME/CFS/FM Awareness DAy 2010 click here!

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.

If you have some spare reading time and ability in the coming days/weeks, why not check out the posts from BADD 2010 (Blogging Against Disablism Day) at Diary of a Goldfish?

I did not take part this year, but i do enjoy reading the posts of others and thinking about my own attitudes as well as learning about the lives of other disabled people, not just those with chronic illness…

I have been watching a BBC4 series called Dear Diary (still available on iplayer until 25th January i think, for those of you in the UK).

I have found it very interesting. The first episode was with Richard E Grant, the second with Mariella Frostrup and there is a third and final programme this week.

I use my diary every day for organising myself but I have never written a diary in the sense of writing my deepest thoughts every day. In times of stress/emotional turmoil i have found that writing things down just for myself to be of great benefit in making sense of my emotions. Sometimes there is no-one who will listen, or who you think you can be completely open with but the exercise of expressing (literally getting it out) onto paper is still useful, even if it does not come back with a hug and reassurance!

 Of course, there is this blog – though not like a diary in terms of a private, no holds barred account of my life – of course it is a diary of sorts. I thought about the points raised in the programmes and why i write the blog, what i gain from it and what the intentions are.

One reason discussed in the first programme was loneliness. A diary is someone to talk to. In the second programme they talked about Anne Frank’s diary and how she calls it Kitty, as if she is talking to a friend.

In the second programme Mariella raises the question of self-obsession. Are people who write diaries self-obsessed? This is something i struggled with when i considered writing a blog. It is a bit arrogant/egotistical to write about your life and expect people to be interested? What were my motives? Did i have anything useful/interesting to say?

I would say that yes, in some ways you do have to be a bit self-obsessed, but as someone with a chronic illness that is all i can be. It is impossible not to be when you are stuck with yourself, and your daily concerns and “work” (it is hard work) are to do with managing your self and body, trying to cope in a private adversity that those around you are affected by but cannot directly share in. I do not think i am special, except in the sense that we all are! I see my self obsession and all the management i do of self and body not just as survival for myself but also an exercise in minimising the negative affects on those who live with me and share my life. There is a sense that our life revolves around my needs, just because I have more needs as a disabled person. This is something i struggle with, but i know i should not apologise for, as i cannot help it. I do what i can. Also, honestly, everyone is a bit self-obsessed aren’t they? If you listened to people’s thoughts rolling through their heads i think most would appear that way at least some of the time.

As for blogging about my life with illness, I think there is a community and a sharing of experience that makes blogging not self-obsessed. Sometimes it really helps to read what others are going through to snap us out of a moment of self pity! It also helps with the loneliness of feeling outside of mainstream society.

I also think that blogging about living with chronic illness is not just saying “here, listen to my marvellous brain talking to itself” or “see how hideous my life is, i am in pain, pity me”; it is giving a voice to our lives and experience. We may not feel that we have this space anywhere else. Our lives seem invisible in the context of wider community. Our experience is misunderstood. For me it is also about reaching out and connecting with others that i cannot do in person. Being among others who share our experience, at least in part.

I would go further and say that this blog is a chance for me to document the truth as far as i can make sense of it: my experience of my own body and illness. I feel that i am constantly being monitored, being judged, graded and assessed by the medical profession and by benefits-related people and processes. I have to interpret my life and symptoms to fit the criteria deemed as acceptable, squeeze myself into the little boxes and simplify the truth. Things are being written about me on a regular basis! Letters fly from one department to another stating various “facts”. I also feel judged by people i meet in everyday life. “You look so well”. Hmm.

The second programme also talks about diaries written by people fighting in wars and those in concentration camps. The urge to write down and document their experience so strong that people have written on anything that was to hand, to make something that might outlive them, making a claim to existence, saying “i was here”; to not be forgotten in the face of death. It is bearing witness to what they have suffered, and documenting events that should be known.  It is a testimonial and giving value to each life. Each voice. When our personal experience becomes political maybe this urge is even stronger.

I think it is human nature to make a mark, to change something to show we were there, that we exist. We carve our names in benches and desks, we write graffiti. I would love to be published, and i think many people who have been feel a sense of having left something to be remembered by. Proof of existence. Maybe when faced with our mortality we cannot help having these urges. Chronic illness may fit into this category. Our relationship with our bodies changes and we perhaps see life differently. I feel there is a sense that it is political as well as personal, and that also drives me to document my struggles. I am here.

The extension of asserting our existence is being understood. As Mariella says in the second programme, as good diary can take the minutiae of life and make it universal; make it meaningful to others. That sounds very compelling to me and i have the urge to read some diaries! (Published ones of course…) Does anyone know of any good ones to recommend?

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!”.

I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:

“But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.”

Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!

I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).

I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.

I also had a big dilemma about whether to take my walking stick…

I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.

Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.

It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!

I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?

Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?

Am i the only one who even thinks about this stuff?

ME/CFS Awareness

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