11 March 2013

Curse Your Sudden, But Inevitable Betrayal

 Greetings Kittens,

For those of you who can’t place the reference, it’s Wash, from Firefly. And yes, I’m still bitter it was canceled. After all this time? Always. (Yes! I just successfully mixed fandoms in an absolutely relevant way, fellow geeks holla!)

I’ve given a lot of thought to this month’s theme of betrayal, and after going through all sorts of fictional and historic betrayals, I decided to blog about medical betrayal, specifically, when your own body betrays you.

I have Myalgic Encephalopathy/Chronic Fatigue Syndrome also known as Chronic Fatigue Immune Dysfunction Syndrome or ME/CFS and CFIDS, with Fibromyalgia Syndrome presentation. This causes disruptions in the central nervous system, immune system, neurological and endocrine system. My personal symptoms include insomnia and non-restorative sleep, IBS, concentration issues, daily headaches, sensitivity to noise, lights and touch, nausea, vertigo, muscle weakness and joint discomfort, widespread body aches, and bone deep fatigue.

Of the 17 to 20 million world wide who have ME/CFS, we each experience it a little differently. The thing that binds us, is the post-exertional neuroimmune exhaustion. That’s a catchy way of saying average physical or mental activity can wipe us out for hours, days, even weeks, depending on the severity of the individual illness. Some days, some months, I make it through. Other times like now, I miss a week of work because I’m in the bathroom every half hour, or I can’t sit up in a normal chair for more than a few minutes at a time.

Many feel ill and exhausted most days. A quarter of us are acutely disabled by ME/CFS, left wheelchair-bound or housebound, even bed-bound. ME/CFS can grow severe enough that even swallowing is no longer possible and patients must have feeding tubes. A 2011 study showed ME/CFS to have a mortality rate of 12.5%

The exact cause is unknown, but the onset has been linked to viral infections, immune dysfunctions, stress and even accidents. At the core, it appears to be an altered physiological response to bodily trauma brought on by illness, injury, stress or toxin exposure, that then damages the central nervous system and compromises immune function.

ME/CFS has no cure, and the treatment covers a wide variety of options from drugs to nutritional changes. That is, when you can get a doctor to treat you at all...

I was first diagnosed in 1992 and twenty-one years later there are still some doctors who don’t acknowledge it as real. This despite the fact that it has been studied and accepted by the World Health Organization, National Institute of Health, the CDC and FDA. Less than three weeks ago, the FDA met to discuss the efficacy of the first drug specifically for ME/CFS and the NIH is looking to increase clinical trials. All of the top medical organizations know what I’m going through, but I’m still struggling to find a doctor in my network.

Raised in the Western world, doctors are held up as the people with all the answers. It is a deep abiding sense of betrayal when they don’t even want to hear the question.

That said, there is still nothing quite like the unique betrayal of your own body holding you hostage, with little rhyme or reason. Some days I can dance and sing and have a wonderful time. Other days, just standing up can knock me flat. Foods that were fine on Monday, can leave me camped out in the bathroom on Wednesday. I can crank out a 15k novella one weekend, and be unable to concentrate for a full paragraph a week later. I’m open and full of hope and ready to take on the world at 12pm, and I need to go back to bed at 2pm. And I never know which day, which hour I’m having, until it’s there.

I lived a blessed few years in remission from 2005 to 2008, by 2010 I was in a down cycle, but pulling out of it. By 2011, I had fully crashed and I haven’t recovered since. I disappeared in 2012 because I didn’t have the energy to both work and do anything else at all. I couldn’t think, I couldn’t write, I couldn’t even chat with friends, it was all just too much.

I started slowly coming back from the isolation and withdrawal at beginning of the year, mustering up mental reserves and holding tight to the concept that I just need to make it a little further. That’s been working as far as interacting more, but physically, I’m still bouncing back and forth between making it through and falling apart. I’ve gone from feeling like I can come roaring back in 2013 in January, to realizing I may need to look at applying for disability in March.

Perhaps the deepest sense of betrayal comes from truly believing everything is going to be all right, while still having to live in a present where everything, is anything but...

There you have it, my current thoughts on betrayal, and a little insight on where I've been. 

Ramble Done, Kittens!


P.S. For more information on ME/CFS please follow the links below. If you think you might have ME/CFS CFIDS or Fibromyalgia Syndrome, please see your doctor and keep seeing doctors until someone helps you. If you know someone with ME/CFS, please spread awareness, it’s not “just being tired”, and we can’t “just feel better”. And if you just want a piece of advise for dealing with anyone you might encounter with ME/CFS, CFIDS or FMS, here’s a good one; never, ever say “but you don’t look sick".

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