Well, it looks as though the good weather has arrived, not for me a good thing other than the fact that I am no longer spending money on keeping the house warm. It is one of those no-win situations that goes hand in hand with living in with MS, being transformed into an orchid. I can’t stand the cold and if it is too hot, I am whipped out by it, given a choice, well if heating was free I would prefer a never ending winter, that way I control what happens to my body and not the weather gods. Although I can never win, it is actually one of the major symptoms which should have pointed to MS for the doctors, as I never really saw them during the winter after I gave up with them ever helping with the pain, but almost every summer, I was there complaining about being totally drained and at times unable to get around. No matter what I said the best they ever offered up was to say I had a virus and it would take time to go. I must have had more viruses than anyone else on the planet and funnily they all became cured when the sun went away and stayed away. I couldn’t explain it at that time but I knew that the sun made me ill and I did everything I could to avoid it, leaving me even being accused jokingly by friends and colleagues that I was a vampire.
Although I haven’t been abroad since I was 11, I knew even then that I hated it and I kicked up so much when the family was due to go on holiday for the last time as it turned out, that I stayed at home with my Auntie and went to school happily. I don’t know and nothing can now be proved either way, but I often wonder if I had it even then. It is even harder to know, especially as I was 12 when I had glandular fever, which apart from the two months I lost lying in bed, not knowing what was going on, or even what day it was, the recovery side isn’t dissimilar to the early stages of MS. When you don’t know exactly when something started you do find yourself searching back in your life looking for the slightest clue, even though when it started is actually irrelevant when there is no timeline available to know where you are on the path through this madness, but it doesn’t stop you wanting to know. There are so many thing in life that it would just be nice to know that I suppose you could really drive yourself nuts if you spent too much time trying to work it all out, but I do understand now those monks and hermits who do nothing but try to find that higher plane of understanding, to know what life is all about.
The last two or three days I have woken early in pain, I find I go through a spell of this at least once a month, it is another thing that I can’t make any sense out of, but it happens with such a regular pattern that I am sure that there has to be something triggering it. It is usually my rib cage and one of my legs, it varies though which is the worst and this time round it has been my left leg. I don’t know how many times in the past 13 years I have found myself contemplating life without it, of just getting the doctors to remove it to give me some peace, it is clearly one of those thoughts that comes out of desperation, but there is also times when it goes through my head with true feeling behind it. I believe that I deal very well with pain and all the restrictions that my health has put on me, but in the small hours when there is no one there and I am lying there in pain, well the thought that go through my head are those that I don’t normally share.
I know that the pains that manage to wake me are the worst only, they are the pains that during the day I deal with by just taking an extra pill before the pain gets that bad, but when you are asleep you don’t notice the build up, the signs that say this is not going away, suddenly you wake in the midst of hell. It isn’t as simple as reaching for that tablet as you can’t move, without the strength I used to have in my arms, I can’t lift myself any longer and even reaching for the button of the mattress elevator forces me to accept more pain in the process of getting rid of it. Trapped lying there with only one choice, to make it worse is the times when you see yourself in every detail and there is nowhere to hide from any of it. Pain breaks down and removes every barrier and every safety net that you have ever built up and you are laid out naked in every way, without distraction or escape. What I feel and think is for now too raw for me to write about, but I can say this, once you have been there and you have felt what it is to be screaming from every cell for it to just end, you will never forget it. There is never any choice other than to make things worse as it is the only way of making it better, those few minutes it takes to position yourself where you can reach that button, then even worse to be sat on the edge of the bed would have anyone wishing that the sight of the pain didn’t exist. It doesn’t end just by taking a tablet, it all takes time and no matter what relaxation techniques you use, none can help until you are lying back down, waiting for that tablet to work.
Why me?, isn’t a question that exists for me any longer, the why is as simple as this because it could and it did, the me, well that is easy to because I am here. Strangely that is probably the most important statement you can hold onto, if you take it personally then it wins, illness is personal on only one level, that you are the person living it. You are not a victim for any reason, or even really a victim at all, it was just a bad throw of the dice and you have to keep trying to beat it at its own game. I know that I have possibly thousands of pain points in the future that I will have to push through and will leave me drained and wishing for a good and understanding surgeon, but what gets me through it is that fact, that it will go away and I will be free of it for a while at least, just unfortunately not forever.
Please read my blog from 2 years ago today – 17/05/12 – Quid pro quo
Although sometimes from my posts it might seem that every minute of every day is spent dealing with the problems that occur due to my MS. Well like any of you reading this, my life is no more one dimensional than yours. I think it is far too easy to let your world be dominated by one thing and one thing only, it is important for all of us to have a varied life as it is to have a varied diet. I can look back on….