I was diagnosed 3 weeks ago after a year or more of quite severe symptoms - particularly tiredness and real difficulties with my head (mostly inability to process information, inability to concentrate on anything for more than a short time and appalling memory). I have been off work since January.
I thought that being away from work that I would be able to manage the tiredness better but alas, no - i have been sleeping almost every day for around 3 hours. If I could I would sleep all day and every day.
When I got the diagnosis, I was kinda happy because it brought to an end the awful uncertainty of not knowing what I was dealing with. I was even happier when the consultant told me that the medication would work very quickly and that these symptoms would begin to subside within a few days. My heart wanted to believe him but my head was a bit sceptical.
Lo and behold, my head was right. If anything, the symptoms are getting worse in the sense that I have now added pain and more itchiness to the list of things to keep me entertained.
For the past few weeks, I have forcing myself to stay awake during the day. I have been taking wee short walks and trying to move about more. But it is a bit of a disaster. I can get to about 2pm - and then everything starts going down hill. My concentration levels - which are bad to start with - deteriorate. I get headaches. My eyes are burning with the effort of keeping them open. I feel my heart pumping in my chest and in my head. I get that awful shoulder pain, my bones are sore and my joints are creaking like a very very old woman's. Then by about 6 o clock, I am falling unconscious.
That's not a good time to be falling asleep - it's homework time for my son (13) who needs no encouragement to miss homework and it's eating time. Until I started taking the tablets, I was spinning the meal preparation out over the day - preparing things in the afternoon, having a sleep and then cooking when my son got home. Even with that routine, the family were having to put up with charred remains more than once a week. Now, it's a burnt offering nearly every evening. I cook at least 2 separate meals because of the vegetarian/ carnivore split in our house. Every night one of us is picking the burnt bits out.
I think I am coming to the conclusion that i am not going to find any relief from this!!! Has anyone any ideas???