My plan that I would just go to bed yesterday afternoon and sleep deeply for a couple of hours turned out to be just getting a little rest for an hour. All yesterday morning I found myself having what I have heard others describe as body shocks when you are perfectly still and happy and your entire body jolts just as thought a sudden electric shock has passed through you. To date I have had them just occasionally and like every other person on the planet every now and them just as I am falling asleep, not yesterday, I think I had about 12 from the time I got up until it was time to sleep again, but then they kept happening, again and again, making sleep totally impossible. I lay there for an hour just feeling all those same sensations as kept me awake during the night, starting to drift and bang, my body shook from top to bottom and I was wide awake again. It was pointless so I just gave up. I didn’t think about it until yesterday afternoon but a good way of describing this increasing body pain and the sensations that go with them, is to imagine that every sense you have is turned up, every sensation is heightened, once a nerve is triggered it keeps relaying that sensation over and over, each time getting slightly less unless triggered again, when it lifted in intensity from the time before. Hypersensitivity to the point of almost feeling your blood passing just below your skin, a constant buzz inside every pore of my skin, pain, heat, touch, all echoing around and added to by the self-created nerve orchestra in an never ending field of sensation. Like everything else you get used to it, but just like everything else in life, at times, it will drive you to the point of distraction and beyond.
For a night time, that had taken so much out of me and having spent so many hours with nothing to think about other than what my body was telling me, to my surprise the rest of the day was incredibly normal. But that is life with a chronic illness, it doesn’t stop just because your body is driving you nuts, or you feel as though all you want to do is scream until you can’t scream anymore, life has to go on. The world and the things I do in it, to maintain my existence had to happen, I have to walk around, I have to fetch food and drink, go to the bathroom, sit here typing and doing what I do, these things don’t change. If I stopped every time that I couldn’t take any more, I would have given in a long time ago, so I continue, I do what I have to and more, because that is what life is for all of us and that doesn’t change, even for me.
I remember when I was having my chemotherapy I met on my very first day there a lady with MS and her husband, he had to be there as without him, well no one would have been able to understand a word that she said. I feel bad now that I can’t remember her name, but it was the only time that we met, she was sat in a one of those wheelchairs that totally support the user, with her head dropped to one side leaning on the head rest. I sat there talking to her through her husband, I put my questions to her, but he had to answer. As she spoke I remember seeing the saliva dripping from the corner of her mouth and her husband constantly dabbing it away for her. One of the things that I remember was that this was to be her third session and only my second, but she raved about how big a change it had had on her and just how much better she was. No matter how hard I tried the one thing I hoped that didn’t show in my face, was just how horrified I was that MS had managed to do that to her and I longed to ask, but didn’t, just how bad had it been before. We spent about an hour together and I realised then what was ahead of me and that all that separated us was time, but she still hadn’t given up, she was still getting on with what had to be done. It was something I had already made my mind up on, but seeing someone who was my future still living and still not ready to give up, confirmed that I hadn’t got it wrong, life has more power than we think and life won’t give up on you, if you don’t give up on it.
I think it is the one thing that those who are fit and healthy get so wrong about life with chronic illness, it isn’t about the illness at all, it all about living, just as it is for every single one of us. Even when our bodies are doing their best to make life hell that is the one fact that is actually the most important, living, living that day and the next and the next. I was dreading actually going to bed, but I was so tired that when at last I could say this is the time, this is the whole point of today, that I didn’t care what annoying games my body wanted to play, I had to sleep. I did. Now, I can’t remember lying there for any length of time at all, just long enough to get comfortable and I was out, this time for the whole night, no interruptions, no breaks, just glorious sleep. This morning, well it is just the same as yesterday, the difference is that I am awake and that bit more able to get on with things, the pain, the sensations, the distractions, they are all still there as they are every day, but today I am awake, so today I really get on with living, not just the functions of it.
Please read my blog from 2 years ago today – 26/05/12 – Who cares if you don’t know
Most women I know think that they are better at multitasking than men, well I have seen several documentaries that prove that in general to be wrong. I don’t believe them, sorry but I have all my life been able to do loads of things at the same time. I remember my first husband could get his head around it and used to challenge me from time to time, I would be sitting knitting, watching TV and browsing a magazine and he would suddenly demand to know what was just said last, the storyline…..