My body feels like a wound up spring that want to explode but can’t. It took me nearly 3 hours to sort out the over night tweets, nothing odd there but I was finding it harder and harder as every minute passed to use three keys on my keyboard, Ctrl C to copy the name, Ctrl V to post them on to my spreadsheet. Each time I did it I felt as though all I wanted to do was scream loudly, not out of pain but because I body was so tensed up by it, that screaming sounded in my head to be the only way to let go of it. Over the last few weeks, this has been happening more and more, I get to this point that having to make any movement more than once, drives me nuts. The worst parts are the crook of my left arm and my lower back, the feeling is so intense that I just don’t know what to do about it. In fact, I have just gotten up after returning to bed for half an hour in the hope that just taking one of my morphine boosters and lying down might just make me feel better, it has helped a lot, but it isn’t the answer. I don’t feel any more tired than I have at any other point in the last few days, but I honestly could have just stayed there, lying in the dark for the whole day, I only got up because I knew that I had to go to the loo yet again. The laxatives I eventually remembered to take last night have more than worked, it actually feels like I took far to much but I know I didn’t. My body just seems to be over reacting to everything today.
I had today planned out to so that I could do the shopping and have my shower, I doubt I will get either done if the things stay as they are, I have the distinct feeling that won’t be the last time I find myself in bed today. I haven’t had a day like this for a while now, but it has happened before and lying down makes me feel more in control of it somehow, but then the guilt of wasting a day starts and undoes just about as much taking it easy achieves. It feels as though every muscle in my body is tight, not in spasm, but slightly clenched and tighter than their normal positions, that was why I went to lie down, I just had to do something that meant I wasn’t using them and that way I could feel the changes as I released each one slowly, something you can’t do when you are sat up. Unfortunately just like my diaphragm that I can’t release at all, some of my muscles just wouldn’t let go, there is still a tightness in the back of my left lung and both of my thighs, something that has been happening and growing now for a while. It’s really odd not being able to make your own body relax, I have always found that one of the oddest things about MS, some people, including me have a bad habit of saying that a spasm is like a bad cramp, we say that because it is the closest thing to it, but even a bad cramp can be broken, a spam can’t. Spasms aren’t always what you would call painful, like today they are just this constant tightness, a sensation best described as though they are turning solid. It is beyond discomfort, yet not quite painful, even if you are lucky enough to break its hold for a second unlike a cramp that doesn’t mean it is over as normally it will return, just as it would be if you had done nothing, they are totally annoying and totally our of my control, which just makes it worse.
I have tired everything, I have tried to relax, I have tried to stretch and pull the muscle, to extend them and push them further than they would naturally go, contracting, scrunching and crushing them, but nothing. As soon as I let them go and return to my normal position, they to return to what they were doing before I disturbed them, tightening and driving me nuts. This whole thing doesn’t happen that often, but what I do know is that it was one of the earlier signs of my MS. I can remember when I was living in Plymouth and my children were really young, that there was a spell of a few months where this happened every day. Both of my children were toddlers at the time and trying to deal with little kids, day in day out on your own, is tough enough without feeling like your entire body is going to explode. The only relief is when they are asleep and you too can sleep, something you have been wanting to do for every minute of the day just gone. If I was lucky, I got that much-needed sleep, but children that age don’t always sleep, so that much-needed sleep doesn’t happen either and the whole thing just gets worse and worse. Then on top of it all, you go to the doctor and they just tell you it’s normal for a young mother to be tired, to be wound up about life and all I need to do is get some rest. How come doctors always tell you to do the one thing that is totally impossible, how do you rest with two kids under the age of 4?
They may be better these days at diagnosis illnesses like MS, but I am quite sure that right now this very second there is someone out there in that exact same position, being brushed off, told to get some rest and that there is nothing wrong with them. I just hope that if any are reading this, that they take some strength from my words and go and insist that more tests are done, the they are sent to see any specialist there is that might just be able to help with any part of it. A diagnosis doesn’t put an end to any of it, but it means that you at least get some help and the drugs do make a difference, not with everything but with some of it, it does make life easier, not perfect, just better.
Right now I need to lie down again, my body is at screaming point again and if I don’t listen and don’t lie down I honestly feel I will physically explode any second.
Please read my blog from 2 years ago today – 23/06/12 – More than just break through
Sometimes when I start my daily post, I find myself sitting for a few seconds searching for the first sentence, the line to start my writing from. I didn’t find today’s hard so much as predictable, so I changed it. That doesn’t mean I’m not continuing the truth of my illness and my life, it was because I was trying….