Dear Diary: 27 April 2022

Today was about average in the main. Fatigue was just a little less today in the background and while there were spikes around 10am, and 3pm, it was not as bad as usual.

I haven’t got through as many of my to-dos as I wanted to this last week, but I have made some progress. For a start I finally got through the clothes washing I was far too behind on. Start of the week I had like 7 bags of washing to do – but not they’re all done and mostly put away. That’s a weight off my mind as that was stressing me out a bit.

Pain today has been “varied” is probably the best way to put it. My legs and feet have ached all day, but have also had tingling/throbbing pain in the fingers of both hands, headache, neckache, and backache, and sharp pain in my left shoulder. I nearly forgot the shoulder pain when writing these down – and was JUST about to say there is something else but I’ve forgotten it, which leads nicely onto cognitive!

With a nearly constant dizziness today which has at times made me feel very queasy, it’s been difficult to concentrate at the best of times. Made significantly worse when I stand up, I’ve not done much of that today. Probably would be a little better laying down but apart from some resting sat up in bed today I’ve not had a nap today as I HOPE this will help me get to sleep (shortly after writing this journal entry).

Today is the second day of taking the 7mg Semaglutide and so far side effects of the larger dose does not seem to be kicking in. I hope that remains the case. Even the 3mg dose has left me sometimes wondering if my symptoms are related to ME/CFS or side effects of the meds.

Today is a typical day in that at least at one point I started thinking to myself that this is all in my head. I know ME/CFS isn’t a “in your head” illness, but as my symptoms are mild compared to many people, I often start doubting myself and saying “you’re just tired and a bit run down, you don’t have ME/CFS”. Truth be told – I don’t know I have it. Not KNOW! However I then go though my symptoms and while individually they may be mild – taken together….. they aren’t imagined.

I definitely am fatigued all the time – even if I sleep 10+ hours (although I don’t often do that). I constantly have a cognitive battle, and often cant even read many pages before unable to concentrate on what I’m doing. Even writing this journal entry – I have had to read back several times at this point to remind myself where I was going with it! Is soon as I stand up I find things even worse. I wanted to say something to my daughter today and had to ask her to come to my room so I could talk to her while sitting down as I found it too hard to articulate while standing up.

While maybe not too intense, I have more or less constant pain in varied locations, they may come and go – but they always come back again. This is not related to any “injury” or anything – Some of the pain is in joints (that are never swollen), sometimes its just in muscles. Currently while I sit here my outer thigh muscles are throbbing leading down to the backs of my knees, my toes and fingers are tingling.

I think then that whatever this is, it isn’t nothing. It isn’t in my head. I’m still waiting for the blood test results from Monday, hopefully they will come back tomorrow. I don’t know if I want them to find something or not… If they do, then it may be something they can do something about and may mean I don’t have ME/CFS. If they don’t then it looks more likely it is ME/CFS or similar.

I will post here as soon as I know!