This is only the third appointment listed specifically in this journal, but the forth appointment in total (since picking this back up in January. The third appointment was looking at test results and prescribing the Folic Acid – which has been discussed here.
So, how do I feel after 4 months of Folic Acid? Has it “fixed my issues”? Not in the slightest! I did think it may have had some effect to start with – but then it was too soon for it to have had an effect, and that’s forgetting the symptoms of ME/CFS fluctuate. It seems it simply coincided with a period of less severe symptoms.
To put things into perspective here is how I am now:
I am tired all the time – doesnt matter what sleep I have had. I rarely sleep through the night. Sometimes I have to get up for the bathroom – but the biggest issue is then getting back to sleep. Frequently I have to get up in the middle of the night after having tried to sleep for 30+ mins, sit up for an hour or so then try again.
That’s all just background tiredness though. Frequently my energy levels suddenly drop much lower, to the point where I cant sit still on my chair, feel like I am slumping forward, am too tired to think, pain levels go up, and I sometimes slur my speech. I certainly can’t think what I am trying to say.
Talking of pain, I feel like I have the muscle aces of Flu almost all the time – with joint pain going along with that often. Sometimes my fingers hurt from doing things like holding a steering wheel, or typing on a keyboard. My feet hurt from resting on the floor, or my backside hurts from sitting down.
Brain fog is very frequent – and gets worse if I try and concentrate too hard – in fact everything gets worse. I had to concentrate to listen to a badly put together training package the other day. One of the voices was so softly spoken that I was concentrating hard for about an hour or so to get through the course. At the end of that, my brain fog was worse, and over the course of the next day all my other symptoms worsened for about 2 days.
Whenever I do too much – physical, mental, or emotional, it always comes back to bite me. Usually by the next day my symptoms get much worse. I may have to take some sick time off work and lay down – although laying down if I cant sleep doesn’t help so I then get up and sit for a while, then lay down, then sit etc etc.
I can only manage to get through my work week by having frequent longer lunches and sometimes having a nap during the work day. Frequently I will book days off on annual leave, just to have a shorter week as I can’t face the next day etc. This means I have to leave annual leave available instead of actually having “real” leave, just to ensure I have a buffer to take time off when I don’t want to “go on sick”. I think over the last year, I have done this around 10 times, using up a third of my 30 days annual leave.
If I did not have a really understanding line manager who does everything he can to help, and the fact that I can carry on working from home, I am pretty sure I would be on long term sick right now, probably at the point of going through capability procedures to dismiss me for not being able to do my job.
This is my main concern – I don’t think I can do my job without the additional support and understanding I am getting. This sometimes means I work a shorter day unofficially. I try and make that time back up – but its slow. It may be that I need to actually negotiate shorter days and cut my working hours down (and get less money). However, I don’t want to go down that route unless there are no other options. That will effect my pension, which I increasingly think I will have to take early and reduced as it is!
I am now waiting for the Doctor to call me back – I just don’t know when this will happen. Today sometime, and most likely in the morning, but its only 8:45 now – and I find it stressful to not know when the call is coming in. It’s making brain fog worse.
Well, the doctor called back, and didn’t say much apart from arranging a face to face in a week……. so we wait. At least it was the same doctor I spoke to before – and the same one next week. That’s a start I think.
