Everyone doesn't experience the same symptoms and there are a huge range of symptoms that can appear, which makes CFS/ME very difficult to diagnose definitively. Other illnesses are usually checked for with blood tests before a CFS/ME diagnosis is made.
Of course, first and foremost is:
- Tiredness
As I'm sure you all know, this isn't just 'I need an early night to catch up' kind of tired. This is a deep, weary kind of tiredness that doesn't improve with more sleep. Sleeping doesn't necessarily leave you feeling rested. There has been many a time where I've fallen asleep on the sofa in the evening and half woken up but literally unable to move my body, it feels like my bones are made of lead and I just feel so heavy. It's a horrible feeling, almost like an out of body experience as you don't feel there's anything you can do about it.
With only having a mild form of fatigue, I can hold down a full time office job but I pretty much always feel tired and could sometimes fall asleep at my desk, I have fallen asleep at lunchtime and do feel tired on the commute to and from work (I know this isn't very good!)
I go through periods of feeling a bit more awake of an evening and then other times I fall asleep every evening watching TV and have to be dragged to bed.
After 4 months of having this I have finally begun to understand that doing loads of things on a 'good' day doesn't help with the following days and in fact I feel much worse. I've not quite figured it all out yet but I know I do need to look for a balance and find ways to store energy better and use it more efficiently. Any tips and tricks I learn I will pass along through this blog and would welcome any you guys have! :)
- Change in sleep patterns
From what I've read, insomnia seems to be a widely suffered symptom with CFS and ME but there is also the other side, which is where I lie (no pun intended), where you sleep much more than you used to but no matter how much you sleep, it doesn't refresh you. I have always been someone who is awake fairly early of a weekend and up and out doing things. I was usually up by 8:30am-9am and couldn't ever really lie in. Now, it's the total opposite and I often surprise myself when I look at my watch and regularly see it's gone 12pm. Especially since going back to work, if you let me sleep, I'll sleep. But I quickly learned that if I let myself sleep until early afternoon over the weekend (I had thought this was a good thing, catching up on rest etc) then I felt so much worse the following week in work. It was much harder to get up, I was falling asleep earlier in the evening and had very little energy.
So now I've taken it upon myself to put my alarm on for about 10am (assuming I have no specific plans - but hey, it's not like I have much of a social life any more anyway! lol) and make myself get up and I have found that this has helped once I go back to work on Monday morning. So maybe if you're struggling with something similar, it might be worth giving it a try as well.
- Emotional changes
One of my least favourite things to do is cry. I've never cried at a film or a book and generally reserve it for when something really bad has happened. However, I now find that I will burst out crying for no reason whatsoever - it's an odd, overwhelming feeling almost. Ok, I'm being dramatic by saying 'burst out crying' but I will suddenly feel upset and the tears will start. Sometimes it won't last very long, but there are occasions where I just can't stop and I do those horrible sobbing noises and everything is all wet and snotty :p lol. I know they say crying can be cathartic but I don't find it particularly makes me feel better - a hug from James is the only thing that makes me feel better when I cry and luckily for me, he's always there to oblige
TBC
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