Wednesday, 26 November 2014

While it’s fresh, by Michael Baker

I was asked by Martin to contribute to his blog regarding my experiences with ME/CFS. This was right after an extremely poor night’s sleep, but luckily my mood is not tied to my sleep so I was very polite in accepting!

How to explain it...

Firstly, a couple of things about me. My name is Michael and I am 24 years of age, currently living at home. This past year has seen the beginnings of my ME, and it is a considerable struggle living with it. I would never have called myself healthy. I have lived with IBS (Irritable Bowel Syndrome for those who don’t know) for most of my adult life; since I went to university anyway. But after several months of crippling fatigue I finally got a diagnosis, a tentative one anyway.

As to my experiences, the best way to describe ME, for me at any rate, is the crippling, almost toxic fatigue. It does not go away with rest (for example, I had 12 hours of sleep one night, and woke up just as wiped out as I had been the day earlier).

It is very difficult to lessen the damaging effects it has on your body, because you simply cannot function to a reasonable degree. It does feel like poison coursing through your system, and although it isn’t life-threatening, the effects it has on your lifestyle are considerable.

When speaking with Martin this morning about my particularly bad night’s sleep, he suggested I write this now ‘while it’s fresh’. Unfortunately, and many ME sufferers can agree with me on this one, it is always fresh. It sticks with you 24/7. But support is there and support is a godsend.

Keep fighting, everyone.

 

4 comments:

  1. I don't have Bipolar nor Me, But I do have hypothyroidism and depression and anxiety, it affects my sleep so much so I can empathise with the toxic waves of exhaustion and feeling a constant battle of keeping going, lovely post and thank you for sharing x

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  2. You're welcome :) and thankyou xx

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  3. Thanks for the question, Phyllis. M.E. is myalgic encephalomyelitis, one of the designations for what is also called Chronic Fatigue Syndrome (CFS).

    "Over time and in different countries, many names have been associated with the condition(s). Aside from CFS, some other names used include Akureyri disease, benign myalgic encephalomyelitis, chronic fatigue immune dysfunction syndrome, chronic infectious mononucleosis, epidemic myalgic encephalomyelitis, epidemic neuromyasthenia, Iceland disease, myalgic encephalomyelitis, myalgic encephalitis, myalgic encephalopathy, post-viral fatigue syndrome, raphe nucleus encephalopathy, Royal Free disease, Tapanui flu, and yuppie flu (the last considered pejorative). Many patients would prefer a different name such as "myalgic encephalomyelitis", believing the name "chronic fatigue syndrome" trivializes the condition, prevents it from being seen as a serious health problem, and discourages research." http://en.wikipedia.org/wiki/Chronic_fatigue_syndrome#Naming

    ~Marty

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