Dear Diary: 1 December 2024

I’ve wanted to do a daily diary for a week or so before my ME/CFS appointment to draw upon, however it’s not been easy. Mostly at the end of the day when laying in bed I’ve thought “Oh I should really write about this!” However at that point I haven’t had the energy. I even thought about recording a voice entry but part of me feels weird doing that, and more importantly I have been so fatigued that I didn’t think I even had the energy to speak.

Yesterday my wife and I went out for Breakfast at Sainsbury’s in Dewsbury. It’s a bit of a way out – 30 min drive – but Sainsbury’s do nice breakfasts. FAR better than closer Morrison’s which is pretty bad, and even better than Toby Carvery which we have had our weekly breakfast at most recently which is copious but often cold! We didn’t park far away but there are no parking spots right next to the shop apart from Blue Badge slots and of course I don’t have a blue badge – so we had to leave those empty spots and park further away. The cafe was right at the entrance though so it wasn’t too bad.

After breakfast we wandered to other shops in the little shopping area and ended looking round Aldi which was actually a really nice shop. I got a couple of really nice looking sourdough loaves and we then went back to the car around 20 mins after leaving Sainsbury’s. We were hardly walking for long. Walking because I needed to charge the batteries up for my chair. I’ve sometimes wondered if it would be a good idea to get a manual wheelchair for when I need one when there are no batteries but I don’t have the upper body strength and resilience for that to be a good idea anyway, and I can’t really rely on my wife pushing me as she then cant push a shopping trolley.

Regardless, as we walked the 2-5 mins back to the car I was slowing down – feeling really really fatigued and thinking I would never have the energy to make the Welsh Rarebit I planned to make for myself later on. This was after walking 2 mins to the shop – then eating breakfast – then 3 mins to another stop – 15 mins around the shop and 5 mins back to the car. Around 25 mins on my feet in total.

When we got home, I was tempted to just go back to bed but I wanted to sit up as long as I could as it gets uncomfortable sitting in bed so long. I played a game on my computer for a couple hours then eventually did manage to make the food I wanted. I made the cheese sauce first and prepared some veggies to have with it later. Then I covered the sauce and left it to go cold. It’s always better with cold sauce put on the toast anyway and this way I could break up making dinner into two sessions. About an hour or two later I finished it off – making some eggs to put on top and grilling the sauce on toast for my daughter as well as me.

When it came to eating I was really tired but enjoyed the food then had a soak in the tub while listening to an audible book – but getting more and more tired. I think I was in bed around 9 pm watching something again – and then had to settle down around 10 pm. I could hardly move at that point and my arms were killing me.

A year or so ago my left shoulder started hurting. I put t down to strain of leaning on my stick. Sometimes was worse than others – but often went down the whole arm. At one point I wondered if it was a heart related issue! However in the last three months or so it’s started being the same for my right arm – so it doesn’t seem to be THAT worry. However my right arm is currently worse than the left one. Both ache to some degree if I sit here and not move – but both (especially the right at the moment) really hurt if I lift them up. I guess it feels like a trapped nerve but I can’t really pick up anything heavy and even a bottle of water pouring into my coffee machine feels like a massive weight. When we get back from our December holiday – I plan to eventually go to the Doctor about the arm issue. I’ve got 2 weeks off work after the holiday still so a good opportunity.

I think I slept well last night but after getting up and having some breakfast (more Welsh Rarebit!), I had to lay down again and think I fell straight asleep until about 12:30 pm

Now I feel really rough. Woke up with mouth ulcers and feeling like I had not slept at all for days. I hardly had the energy to get out of bed to go to the bathroom. Fortunately making breakfast was easy as it was just toast in the toaster then spreading cheese sauce on and putting under the grill in the Air Fryer.

I think its unlikely I will be sitting at my desk today. I already feel like I need to lay down again soon (currently sitting up in bed). unfortunately this probably means I wont sleep well tonight. This is a vicious cycle.

ATM I am sitting here – legs and arms really aching. Arms feel like trapped nerve and both arms and legs feel like flu aches and pains. Headache sour throat and fatigue and I haven’t really done anything.