It’s days like today that remind me that I had M.E. and really…I still have it. I’m lucky enough to have a mild form of it. It took years before it was diagnosed, and even then my doctors never offered any treatment. They just named it, shrugged their shoulders and said ‘there’s nothing you can do‘.
The thing about it is, I look pretty healthy most of the time. When I had mumps I looked awful to the people around me who saw me day-in, day-out at university. I’ll never forget my Advisor of Studies seeing me in the corridor of the medical school and telling me ‘Go home, your face is still swollen and you look like a hamster’. A few weeks later I managed to put on make up one Monday morning like I’d normally done and my coursemates said ‘Wow! You look so much better!’. I still felt just as exhausted as the week before.
Make up covers all manner of things!
‘Tired’ is a word I use to describe how I’m feeling on a regular basis. Today was a particularly bad day though. I woke up after a good night’s sleep, drove my Mum to work then went to do some shopping. I felt exhausted. I sat in the car park for about 15 minutes just trying to work up the energy to step out my car. Once I’d ran all my errands I knew I had to eat something – proper and get some fruit into me. I did. All I wanted to do was curl in a ball and fall asleep. I tried to read. Eventually I had to give up and crawl into my bed. I woke up about 2 hours later, and when I woke up I couldn’t move a muscle in my body.
It’s a horrible feeling.
Equally horrible is trying to think about something and realising that you can’t. You get part way through a thought and your brain just suddenly goes a bit crazy. It’s a strange experience and I don’t really know how to describe it.
I don’t want to complain because I’m ok really. Yes. It can be frustrating at times. No. It’s not very nice to have a constant dull aches and pains and rarely feel full of energy.
I feel bad on nights like tonight. I managed with a lot of will power to get to ‘lifegroup’ (a new idea from my church). First issue is that it was our groups night to a have a meal together. If I hadn’t eaten before I went I would have had problems. I feel awful that I’m such an awkward person to feed! You get strange looks, you get asked questions. You feel terrible when you ask them whether the food they bought was made from scratch or came out of a packet. But for me, eating something processed usually results in me feeling rotten for at least 24 hours after. Second issue is that I’m feeling exhausted. I can’t concentrate to watch a video. And then be asked questions about it when I can’t remember what was said in the video. Third issue is that I have no energy and what I want to do is curl in a corner and be able to just ‘be’ and know that people will understand that it’s just that I’m having an ‘off-day’. Instead I’m in a group with people I’ve never met being asked to tell them how I’m doing and what I would like prayer for. But I’ve got a vulnerable adult in my group and it is not that person’s fault that I’m feeling rubbish. I feel pressure to put on a brave face and ‘be there’ for that person.
By the time the evening is over I’m so tired I can feel the tears bubbling up and threatening to start me bawling for no reason.
I am thankful that I’m much much better than I once was. This used to be everyday and worse. I used to need help washing my hair. I used to have to crawl to the bathroom or kitchen because I couldn’t walk. My joints were once in constant pain. And I used to have the added factor of nausea, heavy bleeding and pain that made me pass out before the wonderful wonderful injections of depo provera.
But I do find the unpredictability, the increasing food sensitivities and the return of migraines frustrating.
I just pray that being sensible and having rest days and being totally anal about what I put into my body will keep me being able to live a life I enjoy.
On that note, I’m going to quit griping and put some pyjamas on and crawl under my duvet. Maybe watch a bit of ‘The Big Bang Theory’ (thank you Gavin for lending it to me!) and most likely fall asleep. And be thankful I have a late start tomorrow.
Even if that means an afternoon of suicide awareness training! (not cheery…but important)