I know what triggered it, even though it was 7 years ago its etched into my memory. I had taken the children swimming. Rich was just learning to swim at that stage, so while Becky did her thing I stayed with Rich making sure he didn't drown completely. We had been in the pool an hour and I was cold. Although the "little pools" are supposed to be warm, they never feel it after a while. It took me quarter of an hour to get the children out and by this time I was shivering, so much so that I couldn't get the key into the lock of the locker. About a week later I went down with a chest infection which laid me low for five weeks.
That was March, into April. Then came July and one day I was fine and the next day I felt ill. It was as if a cloud had just dropped everything it had onto me. I was hot, my joints were really painful, I ached and I was so tired. I carried on like this for a week and then went to the GP. That was the start of 6 months of investigations, referrals to a rheumatologist and endless blood tests. The inital diagnosis was Lupus and scared the hell out of me. Luckily, after a few months the tests for it starting coming back negative, instead of positive, and the thought process began again. Eventually M.E was diagnosed, still a pain in the arse, but far better than Lupus!
For the first year of the illness I think I slept for at least a total of 6 months on top of the normal nights sleep! I even remember falling asleep whilst on the phone one day to my Dad! Darn right rude of me but I just couldn't keep my eyes open. I felt as if I was sleeping my life away, but couldn't do anything to stop it. Each year I seem to have been affected slightly differently, varying from chronic tiredness, to more painful, flu like, on fire, joint pain, sore throat and nausea. I have forgotten what it feels like to be refreshed after sleep. Most of the time I feel like I have very low grade flu and always, always tired. I am one hot mama too, sadly tho its due to my body's inability to control its temperature efficiently rather than being "hot".
I get flare ups too, when I get all of the symptoms rolled into one huge argggghhh! Sleep is the only way out, that and plenty of pain killers. Just have to go with the flow until it works its way out of my system.
I was under the hospitals care for a year, and they "train" you to live your life carefully. What to do, what not to do and how to pace yourself. Forget this at your peril. What you do today will come and bite you on the bum tomorrow! No ifs, no buts, it will happen. There is a big temptation when you have a good day to make the most of it and go crazy. Can't be done. Payback is a very important word when you have M.E. I also had a course of CBT, cognitive behaviour therapy. The only help I felt this gave me was to be able to say No and stand up for myself, no small thing actually. Its very difficult when you look and act ok, but underneath you are fighting a battle. People only see you as unwell if you have outward signs. How can you explain that actually, just talking to someone for a length of time is enough to feel the need for your bed!
It has obviously impacted hugely on my life, and that of my family. There are too many occasions to count when I have said we will do something, go somewhere etc, and have to pull out and disappoint them. Another symptom is brain fog. Sometimes I am unable to hold a rational conversation because I physically can't pull the words together in my brain. I am forgetful and confused, and whilst sometimes I can laugh about it, I hate it. I know I am slow and it frustrates me, but frustrates Matthew more. He has to make so many allowances for me, and he does, but he worries about my state of mind at times.
All in all as you may have realised, life is a constant battle for me. I have to battle with myself to get up in the mornings, because I am just so tired I want to stay where I am. I guess I must have a fairly strong will because the temptation to give up and hibernate is always there, lurking like a black cloud.
I am going to see The Feeling on Sunday. Instead of looking forward to it I am dreading it because there are no seats and I have to stand all night. Last time I saw them at The Academy I had a total energy drain afterwards and had to sit down for half an hour before I could leave! Mind you, that gave the band time to pack up and we got to meet them outside the venue. I had to pull out of two gigs earlier in the year because I just wasn't up to going. Even when I went to see Olly Murs I sat down and couldn't see anything because everyone else was standing. He sounded great tho!
Well that is a bit of an insight into M.E from my perspective. I have tried not to moan and just be factual. You all know how much it gets me down, I am not the happy bunny I used to be, its hard when you are always tired at the very least to be positive. I try not to moan too much, it gets boring, but sometimes I just want to let it all out.
All my family and friends are fantastic and help me where they can, and for that I love them and thank them from the bottom of my hot heart!
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