Tuesday, 4 August 2015

Oh My God - Its Chronic Fatigue!


I have been struggling with Chronic Fatigue Syndrome for a while, both in terms of managing the symptoms which vary considerably and in the simpler fact of accepting that I have this condition, that this is my life. I've also been reluctant to acknowledge or discuss it's impact on my life, because I haven't wanted to be seen as a person with a syndrome, I wanted to own my space in the world - not be defined by or known to others as a subject of my health condition. Nevertheless, I felt it was time to share a few words about Chronic Fatigue and its challenges.

Without wanting to make a fuss, it is difficult to help other people understand the challenges that CFS or M.E. brings to life on daily basis. Chronic Fatigue Syndrome is an illness which is still mostly not understood, either by the medical community or by the population in general. The illness is also known as “myalgic encephalomyelitis,” which means “painful inflammation of the brain and spinal cord,” and many people now refer to it as ME/CFS. As the symptoms vary considerably, the suferer, who is probably only seen when out and about and likely to be appearing relatively well, often experiences a lack of understanding, resentment and even rejection from family or friends for their consistent absence from participation in a wider life.
Yet for some sufferers, most of the time they are housebound and in chronic pain.
''I could not think straight. I had days where I couldn't spell my name. And such complete exhaustion - you can't describe it, like you just ran a marathon, are hungover, and have flu all at once'' says former attorney Jeannette Burmeister.

To share a little insight into my own experience with CFS, at it's worst I can barely lift my head from a pillow, drinking a cup of tea is like holding a sack of potatoes at arms length, all of my limbs descend into a leaden weighty numbness. To follow a conversation or tv plot is unmanageable at such times and to formulate or vocalise a response to even simple questions such as 'are you hungry' is occasionally impossible. Reading a book becomes pointless as I either read the same line again and again (a bit like groundhog day) or sink into a fitfull unconsious doze until the constant aches and pains - ranging from mild to madenning, jolt me into wakefullness again. At which point the perscribed painkillers are taken yet again, despite my reservations of over use and concerns about how such long term painkillers may develop at the least - a dependancy, at the most - other health complications, but the doctors assure me I should take them and in the absence of any other way to ammeliorate the symptoms, I do when I must.

A recent report published by Action for ME, a UK non-profit organization, revealed that 51% of survey respondents have felt suicidal as a result of their illness (here) and whilst I can sympathise with the wish for release, this is not the way. ''Combine the physical problems with the mental ones, plus society’s blaming you for your own disease and you have a perfect storm of hopelessness. Sometimes I think of Chronic Fatigue as nature’s form of water torture. Anyone can endure a little while of it; a day, a week, but as it drags into months and years… it can become unbearable.'' says one Chronic Fatigue Syndrome sufferer.

To feel so betrayed by ones own body is remarkable, I am regularly flabberghasted as I confront this reality with dismay for the umpteenth time.
''The reality is that we’re constantly being crushed under the burden of our extraordinary tiredness. There is no escape from it. There is no respite. You are just bone-weary, soul-breakingly exhausted every day. Every day. Every day.'' says another CFS sufferer.
Seemingly normal tasks regularly result in massive exhaustion and muscle pain that can last for days or weeks and the much sought for rest and recovery is not provided by my disenchanted sleep which serves only to deliver fresh pain, replenished exhaustion and a varying tinnitus - from a gentle ringing to a deafening clamour. With such obstacles before me, it can be difficult to keep a positive outlook in life.

Fortunately the medical specialists have in more recent years acknowledged that this is indeed a real condition and not some imaginary malaise. But no fix-all is yet on the horizon, cross fingers, make a wish under the moon and hopefully hopefully maybe soon....

Being restricted as I am, has led me to keep mind and spirit hopeful and alive by much reading g when I can and by exploring the virtual world of Second Life, where I was fortunate enough to meet my wonderful wife without whom my life would be bleaker. Initially I explored the virtual reality as a venue to get out and about, to meet friends and partake in a social life when I've been unable to do anything in the physical world.  I've also explored the diverse skills of 'machinima film making' in Second Life - from story planning, scene arranging, eventual filming and editing - all of these tasks managed from my home computer in variable to terrible states of health, which has helped me to keep my faculties together, to have a sense of presence and participation in the world. I would recommend to any similar CFS sufferers that they do try to develop a hobby of some sort and if there's something they could do online with others, perhaps a chess club or etc, so much the better.

My experience with this unexpected disease has led me to become much more understanding of and sympathetic to people with all sorts of diseases and disabilities, as well as to appreciate and value the wonderful gift of life and consciousness with which we are blessed. I try remember that everyone I meet in life may have some challenge, if not personally then through family or friends and I try to be mindful that we all have needs and that some of us may be less able to express them than others. We may not necessarily be 'our brothers keeper' but personally I do contribute my time to help others when I am able. I believe in a community minded society in which we may all help each other, for a society of egocentric solipscists would in my view be a very selfish one, bereft of the nobler sentiments of empathy and compassion, resultingly sad and ultimately pointless.

I couldn’t have written this note at my worst, I couldn't even read it at such times. But if it helps any reader to understand the CFS Survivor the better, I am grateful for that.



2 comments:

  1. I thank you for sharing this. I suffered from fibromyaligia, another misunderstood illness, for many years, and it wasn't until now that I am older and have developed osteoarthritis and carpal tunnel as well that my doctors have acknowledged my disease. And even with a doctor's diagnosis still many do not understand the amount of pain I live in every day. More education to the public is what is needed.
    Mary

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    1. Thank you Mary, you have my deepest sympathies for your troubles and pain. More education and wider awareness is deffinitely whats needed to help create a greater understanding of these difficulties. Best wishes :)

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