Dear Diary: 16 September 2022

I’ve not been making posts as often as I used to lately. This is partly due to forgetting to post, partly due to nothing new to report, partly due to not having the energy. I started making this post around three weeks ago!

It’s now been around three and half months since I started taking the Folic Acid. I am meant to take this for four months. Initially it did appear that my symptoms were better but this was definitely a placebo. There hadn’t been enough time for this to be the case anyway – and I know that my symptoms come and go. However in the last few weeks I’ve been bad again. I took nearly a week off at the end of August. We had two days off for bank holiday so I just booked the other three off. However, I spent a lot of that in bed. In the last two weeks I’ve had one day off sick where I’ve just had to go to bed, and another day when I managed half day before going back to bed. Left early a couple more days – and will have a long lunch and finish early today too most likely.

At the moment, I am struggling. I am struggling every day. At this very second I am struggling with fatigue, brain fog and debilitating constant aches and pains. It’s 10:30 and I am at work – but there isn’t a lot I need to do (fortunately). I am doing this post now to keep myself occupied but at 11am I will have an early lunch – grab something to eat and then go sleep for an hour or so (or maybe sleep then find something to eat when I wake up and go back to work). I’ve been in meetings for around 3 hours already today and I cant think straight.

I think at the moment the biggest challenge is the pain. Every muscle and most joints feel like they are on fire. It’s like the aches associated with flu. I have tender points all over: My fingers hurt from resting on the keyboard – when I’ve been driving they’ve hurt from holding the steering wheel. My feet hurt from resting on the ground. When I lay down – if I am on my side – I cant have one foot resting on the other – it hurts too much! Even sitting down is uncomfortable as my backside aches too. When I sit up in bed its a little better as there is more cushioning from the mattress, but I cant sit long like that without increased pain in my legs and restless legs.

Trying to concentrate while in pain just makes everything worse – the more concentration – the more chances of post exertional malaise slapping me in the face the next day or so. This then makes my sleep worse, my fatigue worse, my brain fog worse and my pain worse. It’s just never ending!

Next week I’m going to try and make a Dr’s appointment as my Folic acid is nearly out now. I was prescribed 4 months of 5mg a day Folic Acid 20th May – will have got them a few days later – so its coming up to 4 months which was what was prescribed. Clearly it HASNT made me feel better!

I hope at least that the Dr will now refer me although I suspect another round of tests or something else to postpone that. Even when I AM referred, I expect it will be years before I am actually “seen”. I wonder if I will still have a job by the time I get any diagnosis!!