Wednesday, 26 July 2017

26th July

OK bored now. Feeling a bit better (better enough to be bored). Still have no energy and my breathing is bad. So can't really do anything but watch TV.

Tuesday, 25 July 2017

25th July

Still not good today. My breathing is a bit better but still feeling weak and achey. My balance is bad and struggling to focus on things. Didn't sleep well last night and today I'm feeling like a Zombie again.

Monday, 24 July 2017

24th July

I managed to get the bathroom cleaned yesterday before running out of energy but not much else. Today I'm really struggling. I have no strength at all even typing is hard. I am really struggling for breath think I have a chest infection which might explain why I'm so wiped out. Sick, dizzy and achey today so had to take day off work. Had too many of these recently.

Sunday, 23 July 2017

23rd July

Feeling a little bit better today. Still achey and tired but not a total Zombie. Had a lazy morning to try to conserve some energy. I did the monthly big shop online started to try to do this because supermarkets are exhausting too bright and noisy it makes it hard to concentrate on what I need. This way I just have to do some little shops for fresh food. Need to try to get some cleaning done this afternoon just going to try to get upstairs done because the whole house is too much.

Saturday, 22 July 2017

22nd July

Feeling a bit Zombiefied this morning. Have no balance and difficulty focusing. Would have loved a sleep in but the cats decided they really needed feeding. Spending the morning on the sofa but really need to get some cleaning done so hope I have some energy this afternoon.

Friday, 21 July 2017

21st July

Going to try to catalogue how I feel for a few weeks. This morning I'm exhausted. Feel really weak and shakey and struggling for breath. I'm having trouble even walking up stairs. I was supposed to be in the office but I'm working from home because I didn't feel safe to drive this morning. Not too dizzy though and no visual disturbance. I'm in a lot of pain because I had physio on my shoulder yesterday but feel achey everywhere else as well.

Friday, 30 June 2017

Who stole my spoons?

Before I start the title refers to spoon theory read more about that here Spoon Theory.

I can't quite put my finger on when I started to get ill. Which is apparently unusual with ME/CFS. For many people they develop it after a period of illness and its quite clear. For me I had chest infections one after another without really feeling well in between. I was tired and run down not ill but not well either. Afterwards I felt OK. Thought I was just out of condition but no matter what I tried couldn't get my fitness back to how it had been before. Everytime I started to get fit I was ill again.

Then the next winter the chest infections were back. One after another after another. I was not getting well in between again. Then afterwards I still wasn't well. I felt like all the energy had been drained out of me. I was sleeping better that I'd slept in a long time but not ever feeling rested. After a few months of this I went to the GP. I had all the blood tests but the only thing abnormal was was slightly raised white blood cells. The doctors conclusion was post viral fatigue and that's as far as the treatment went.

And so it went on. Me trying to carry on as normal but gradually getting more ill. Having repeated trips to the GP as more symptoms developed. Each time symptoms were treated separately with no connection back to the fact the post viral fatigue hadn't magically gone away. By autumn I'd gone from drained of energy to having dizziness so bad I often couldn't get out of bed and foggy head so bad I struggled to function.

Foggy thinking doesn't sound like a terrible thing. But imagine not being able to remember how to do the simplest things and forgetting everthing. I'd regularly think I'd done something that I hadn't. Or forget that I had done something like put food in the oven. I had no concentration and no ability to process information. But still apparently this degenerating condition was post viral fatigue.

It took a few more months and two more rounds of blood tests. Then I walked into the doctors one day determined to fight my corner and officially get the diagnosis I'd known for months. And the GP I saw that day surprised me and said it before I did. She was rerunning the blood tests with a few additions but it looked like chronic fatigue syndrome. It didn't make me suddenly better but having a diagnosis still felt like a relief. Suddenly it wasn't just in my head it was real and I could start to get some help.