14 July 2019
I thought I would try and write a diary for a few weeks, partly for me and partly to show people what my day is like. To give insight into my limitations having ME/CFS. I woke up today, too early, I usually like to be in bed until about 10am, giving me 12 hours of ‘sleep’. I always sleep bad, it’s part of the illness, for some people it’s one part of their symptom picture. I usually wake up about 8 times a night and am driven to get out of bed. It’s because I must pee, I’m hot, I feel like I can’t breathe or I’m generally physically uncomfortable. Most people can roll over in bed without waking up. I’m pretty sure I wake up when I need to move.
So, I woke up too early, feeling sick in the stomach/guts. I’m not sure why, I also suffer a myriad of food intolerances and it’s easy for me to accidentally eat the wrong thing or too much of something. This also effects my bowels, which are v e r y s l o w. This also makes me ill.
I went to the loo then I tried to get back to sleep. It wasn’t happening. I was still uncomfortable; I was hungry as well as feeling sick. Maybe I’ll have a nap later after my food is digested, because, guess what I also have a hernia in my stomach, so I can’t lie down or do anything that puts me in any kind of horizontal position (even bending over and picking up a few things can set it off), or my food comes back up.
I do my usual, get up, make a cup of tea, fill the sink with water and throw a few things in there to wash. I wash a few things every time I go into the kitchen, so it usually takes me all day. I go to my computer and sit with my tea and breakfast cereal.
Mornings are worst, I’m usually foggy and can’t think. It’s when I feel the worst. Today some random muscles in my arm are sore, my fingers are sore… I don’t know why. I get sore muscles from the smallest of exertions.
I spent a couple of hours on my computer, writing this and mucking around on social media. I spent some time organising stuff I’m trying to get rid of on various facebook groups. I also spent some time sending emails related to my business and trying to get my head around changes to Etsy.
After this I ended up taking our dog Clifford for a walk – not something I normally do, but I must at the moment because my partner has had surgery on her back, and she can’t do it. Exercise is not a good thing for people with ME as it saps away at our limited energy. One of the ‘old’ recommended treatments is graded exercise therapy. However, this has been proven to have detrimental effects and it something that ME/CFS activists are working at getting changed and educating others – including medical folks that it is in fact not good.
Anyhow, I walked Clifford. Quite slowly, if I walk very slow my heart rate doesn’t go up too high and it’s vaguely doable. I put some washing in the machine and then I sat and rested, by about three o’clock. That was basically my day.
What is ME/CFS? check it out here.
Why is graded exercise bad, check that out here.
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