It's 4am and I am wide awake, which may come as a big shock to some people. However I am being kept awake by relentless muscle ache in my back and legs. I've taken some cocodomol but they're not having much of an affect so I'm just trying to distract myself. I've been reading a great blog by another M.E sufferer (I really do need to come up with a better word) Samantha McInnes at www.samandme.org and I'm finding a lot of similarities in our M.E journeys, which is quite comforting. Although not particularly nice for Sam or myself. I've also been reading a book called 'Me before You' by Jojo Moyes and am falling in love with it, I love reading but this book seems very poigniant at the moment. For those of you that don't know it's about a girl who gets a job as a carer for a man who is paralysed from the shoulders down but unbewares to her she has basically been employed by his parents to try to relieve his deep depression and to be on suicide watch. Sounds a bit maudlin I know, infact had I known this before I started reading it I probably would have thought twice but I am stickler for not reading the blurb on the back cover because I think it somehow disturbs that escapeism of reading. I am the same with tv guides, I've stopped getting them now because they give too much away and can make a program seem dull because you're thinking well I already knew that. For me I only want that feeling because of my savvy detective skills and ability to read all the dramaturgical signs, ooft what a big word; well I didn't spend 3 and a half years studying theatre for nothing. Anyway getting back on track and yes I'm aware of the tiny spoiler I gave you which contradicts what I have just said.
What's most embarrassing of all though is that I've just had to be lifted from the loo by my Dad, of all the people! Luckily I managed to get my pants up first otherwise I really would have been mortified. My legs just didn't have the strength to lift myself up. So to be honest I didn't have much of a choice. I had to walk like a toddler learning to walk along the furniture just to get there in the first place. At the end of the day it was either that or stay on the loo until a more reasonable time in the morning when my parents got up for work, by which time I probably would have fallen asleep and fallen head first into the bath.
I absolutely hate being reliant on other people and I like to be in control. This has been one of the hardest things to come to terms with in the last two years, it may seem small but when you're used to being independent and putting others first, it is a big change. I think this is why I dislike flying, because I can't see where I'm going and you can't even see the pilot to tell him to watch out for that strange looking cloud formation; but it's something I endure because there's lots of sunshine and a sunbed or an exciting city waiting at the other end. So rather like flying I've learnt to relinquish some control by accepting more help, not because there's something nice waiting at the other end but because it is at least safer than trying to get anywhere on these Bambi legs. That would only make the situation worse by needing to be lifted up from the floor/ stairs etc.
I do feel particularly annoying when I need help, especially in the middle of the night. As well as disturbing my parents sleep I feel like "I am a grown woman I should be able to get myself a hot water bottle and especially be able to get off the loo." I know many people would be horrified to hear this and think that it's the ultimate in laziness and selfishness but let me tell you I hate it. It is bad enough to want to fall asleep in public places and feel constantly run down but then to lose your dignity and have the simplest of tasks elude you can be soul destroying.
Somehow I'm managing to keep my humour about it, like they say "if you can't laugh, you'll cry" and trust me I've cried a lot and will no doubt cry a lot more. As my Dad was helping me back to bed last night, holding my hands, I did my best Brucie impression. No not a tap dance unfortunately but a wobble and a "keeeeep dancing." I am extremely lucky to have parents like mine, they just understand and are always there, no matter how many times I ask. I guess that in part this comes from seeing me at my worst, they were still fab before that though. They see the things that people in the outside world don't see. Like me needing help to get out of bed before I wet myself. So I try and keep my humour up for them too, to let them know that I'm still fighting and that I'm still me. I've just had to learn the hard way to ask for help, no matter how much it stings emotionally.
In future blogs I'll chat more about the perceptions of the outside world but for now my arms are aching, so I best give them a rest.
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