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.


Tuesday, 25 November 2014

Above ground, below ground.

i am always amused when friends say wow you are out all the time doing lots of fun stuff..

truth is, the happy face on the outside doesn't always tell the pain, fatigue and torment on the inside.. photos posted from delightful places don't tell the story of what it costs to be there..

having three chronic, invisible mental and physical illnesses is a full time job requiring much effort and care.. i rest a lot.. i meditate a lot.. i regularly flatline.. i work harder now than i ever did as an engineer..

time with friends, time with music, art, theatre, just time out.. is part of my wellness regime, as well as just something i like to do, as everyone does.. but it takes a lot to get there.. my bucket needs to be full or nearly full or i'll run into trouble..

self care, connections, and enjoyment are critical components of my staying alive..

only a few see the whole story.. i try to present well to the world, so others need not suffer my travails or worry about me.. and so I don’t get hurt.. especially by well meaning ones..

what else is there but to smile anyway..