MS. Multiple Sclerosis
MS. Mind over Situation
MS. Memory Shortfall
MS. Mission Statement
Last year, on 7th December I was told succinctly and without any words of support that I had MS – probably of the progressive nature.
My husband and I reeled out of the hospital in a state of shock. We have been through some shocking times in our long life together and I think this is up there with one other truly life changing event. More on that later.
The purpose of this blog is to try and make sense of my life as it is now turning out – and that of other people too maybe, if they want to join in. And also to keep our many friends and family up to date with where we have got to, trying to rebuild our lives on the many levels we exist. I am aware that when I see friends and family now, all we seem to talk about is this disease and I do not want that to run my conversation as well as trying to run my life. By visiting my blog you will know how I am doing. How I am being affected. What sort of help or treatment I am getting. And the latter I hope may be of help to other sufferers maybe. The condition is a very lonely one. If you say the dreaded C word everyone knows what it is. But people don’t understand about Multiple Sclerosis unless they have been touched by it in some way.
A boyfriend from years and years back once said to me, “You’ll survive. You’re too much not to”. I cannot remember the circumstances which prompted this statement but it’s something I have remembered over the decades and there have certainly been times when I could quite easily have wished I could give in and let events over take me. But I’m too much not to. I’m not sure upon what premise he said those words and trying to qualify them I do not in any way mean I am too much in that I’m something amazing. But I’m not going to let the bugger beat me.
It’s taken me over five months to reach this stage where I feel strong enough to begin this mission. Not this blog as such but this new life. The last few months have been horrible. I have been horrible. The weather has been horrible. But I think I’ve reached a turning point.
I have been of the view that inexplicable things happen to people for a reason. It is up to them to make that reason have a purpose to be of use to either the individual or others around. I’m not saying that to sound pious or goody two shoes or whatever: But just to try and make something positive out of this place I now find myself and so here is my Mission Statement.
- I understand that no two versions of MS are the same. Therefore it is very difficult for those who do not suffer from it to grasp exactly what it is that does or does not work. How disability strikes each person differently. I hope that perhaps this blog may help people understand a condition which, it seems to me, the medical profession find hard to comprehend.
- I will really try not to berate the NHS or the medical profession. I know the former are struggling with inadequate funding in an out of date service. But I have had only a little help or support regarding Multiple Sclerosis from anyone in the medical profession. But there has been a beacon of hope in the form of KMSTC, The Kent Multiple Sclerosis Therapy Centre. More, much more on that fabulous Centre later.
- Finding humour in this situation. Is this something to do with Monty Python’s Always Look on the Bright Side of Life? And it’s funny Python has come into this statement; there will be more on pythons and other slithery things later.
So, you people who read this will know how I am, without getting the whole explanation and chapter and verse which is boring to have to listen to and I hope I can put it in a way that makes this mysterious ailment more comprehensible. My life is going to be affected in so many different ways from immobility to incontinence, diet to lifestyle and I am sure in all sorts of other ways I haven’t yet begun to think about therefore experience but are going to be lurking around like some sort of Malevolent Serpent. Here we are, back to snakes again.
What follows below is an example of a frequent experience. Read it if you wish and more will follow on my next post.
PAIN
Some people have MS and no pain. But they probably have something else instead like maybe Muddled Speech or problems with sight. The Optic Nerve is one of the targets of the MS machine. But pain has been a big problem for me and has been the reason why I have been travelling along this road to diagnosis. And how do you explain pain? I am sure most, if not all of you have experienced some sort of pain but when you are trying to describe it to a health professional it isn’t that easy. Is your version of what you call a cramp the same as the next person. I can’t begin to appreciate the pain a man feels when he’s been kicked in the balls. The same way he can’t begin to understand a period pain. A professor I have seen (for the second opinion) started to ask me about the pains I was experiencing and got really quite short with me for apparently contradicting my pain experiences. So I now have different names for them, the names being either aquatic creatures or slithery snakes.
So, there is the Electric Eel. He stretches himself out from one end of a limb to the other. If he’s feeling really energetic and friendly he might ask his mate to join him so there is one down my arm and one down my leg. The tingly sort of pins and needles are like little electric shocks – very little shocks but they make my hands and feet feel as if they being constantly electrocuted. And I’ve been there with the Nerve Conduction Tests which were not nice. Not because they were very painful but because of the way I was treated. More on that later.
So, you have met Edred and Essssther the Eels. That will do to start and they are the kinder of the monsters who come to visit.
Mandi’s blog 