If life were simple I guess that I wouldn’t be writing any of this, there is one thing for sure and that is there are surprises around every corner just waiting to make you sit up and think. I woke up last night around 4 am, I had that really painful spasm around my chest again, breathing had become more a process of gasping and I could feel almost my entire body was filled with pins and needles, with my pulse thumping in my ear and my right side. As I lay there bringing my breathing under control and waiting for my body to level off in it’s pain, I suddenly remembered that the exact same thing had also happened the night before. When I woke up yesterday morning I had totally forgotten about it, but waking last night and feeling it all again brought it back with total clarity. I couldn’t breath because of the pain and tightness of my lower ribs, they were so tight and painful especially on the left side, that the only way I could find breath, was to consciously breath with the upper half of my chest. It may sound stupid, but once I could breath I could think of just one thing and that was having a cigarette, I got up and headed to the kitchen where I made an effort to put both events into my head in a way I couldn’t just loose them again, by staying awake and by going over them several times. Once fixed, I slipped back to sleep just as I had the night before.
It made me wonder just how often I do wake during the night due to pain and spasms, all that I have simply forgotten as they broke my sleep for a short spell and then sleep took over again, pushing the event into the darkness. I do know that I wake from time to time for a few seconds, but I can only guess that may well have been many many more periods of pain that sleep has erased as unimportant. There is nothing anyone can do about spasms, I am just unfortunate that my MS discovered my intercostal muscles and seems to find it so much fun to play with. It has been months now since I last didn’t have at least just a tightness across the front of me and often around my entire body, the pain levels have been held by my medication and these short spells of intense pain have only one conclusion, to wait and let it pass, luckily it is years since any pain made me panic. The only thing I can’t make sense out of is why all of the pain and tightening in my chest increases when I lie down, even putting the mattress at different angles every night, hasn’t made as much difference as I had hoped, but it has helped. It seems that any position other than upright is enough to set things off, different nights seem to cause different things, there is never total relief.
I used to wonder why I couldn’t remember ever living inside a body that wasn’t filled with pain, but the answer came eventually, one that is obvious once you work it out. None of us go about our daily lives checking how our body feels all the time, we just accept it is there and it is doing what we expect of it, we only pay attention when there is something wrong. So maybe it isn’t so surprising that I don’t remember, as I never actually made the memories, I ignored it totally as I never thought that I would have a need for them. We just don’t appreciate ourselves when everything is working as it should, it’s only when it all goes wrong that we start to make mental notes for the future, just in case they become important. I have lived with this madness for so long that I now even ignore major events, just dismissing them as normal or a blip, then shoving all thoughts of it into the past.
I watch a program last night about ageing, it was another of those happy programs that made me realise just how doomed people like me are. They were once again making the point that to live healthily into old age we all have to take exercise, not just sitting doing simple stretches, but out there jogging and breaking a sweat, especially women if we wish to maintain our bone density. As someone who falls, on a regular basis, being reminded that I am now not only at the age where my bones are thinning but unless I exercise I am in great danger of breaking bones when I hit the floor. With the sort of exercise, they recommended now totally impossible, I guess it is just a matter of time before the first break appears, something I could really do without happening. Once they had made me realise how useless my bones are becoming they also showed the effect of being sedentary for a number of years has on your muscles, all of them not just your legs. Having hardly moved for 7 years I would expect that if they analysed my muscles, they would be well aged past their years and that is without allowing for the damage that MS has done to them. Some times I really get the feeling that I shouldn’t watch TV, especially programs that are clearly designed for those still healthy and young enough to make the difference that most need to. By the end of the show, I was feeling really useless, far more than I did before I started watching and without a possibility of a happy future, I would put money on it that they didn’t put the slightest thought for those of us who don’t have the choice or opportunity to make our future fitter.
I am 53 now, I used to always be told that I looked about 10 year younger than I really was, I know just by looking at myself in the mirror that is no longer true. My health is ageing me rapidly, something else no one warns you about, know one ever sits you down and spells out the side effects of something like MS. No one warned me that I was facing a future where every year was taking the toll of at least two and that isn’t just your body, it’s to your face as well. I see every new line, every new grey hair and every sagging muscle, thanks to my health I can’t do anything about it at all. For many women that is a major thing, my answer is try and not look, to pretend that I am still as young as I feel inside, somewhere I refuse to age ever.
Please read my blog from 2 years ago today – 01/04/12 – Death by misdiagnosis?
Well I did as I said I would and starting from my afternoon sleep onwards, I slept for 2 hrs as that was what I needed, returned to my PC for an hour while Adam cooked dinner and I switched my PC off at 5pm started my evening, nothing harder than watching TV and having a couple of drinks. I went to bed a 10pm and slept fabulously until the alarm sounded at it’s normal 7:30am. I am back in routine and I am going to stick to it. I have had MS long enough to know that you have to work with it or it will make life hell, winter really wasn’t that bad so if living that slower way of life is what is needed then I will live it. I’ll keep you updated as the days go on.