Yesterday I received a couple of lovely twitter responses from two others who also live with MS, I had put the link out for this blog earlier and they had read yesterdays post. It was the first one that stunned me most, probably because it was first. If I have read her correctly, I suspect she is turning a little red at the moment, but I had to mention her message as it was wonderful and totally blew me away, finding myself stuck for words without it being brain fog, is a touch unusual.
Quote: “I was reading your blog and I realised that was me I gave up let MS win well not anymore ..thanks :)”
I sat and read it several times before I could answer her. Not long ago I expressed my hope that someone would gain inspiration or an insight from my writing that might make a small difference with MS treatment. I never really considered that I could actually helps someone directly, that someone might see a glimpse of hope, that would nudge them into making changes with their own illness. As is probably clear, I am still a little stunned. There are hundreds of people who have said this better than I can, but it really is the greatest reward to know that you have helped someone.
I see myself as just another person with a problem to live with and a need to document it. There have been thousands, probably millions who have done and are doing exactly the same thing. Writing is in itself a great therapy, just being able to pour out the words, nudge, file and order my thoughts. It is amazing how wound-up I can get myself at times over the silliest little things. I suppose it is true to say that all of us get more angry with ourselves than we do with others. I frequently scold myself when I do something silly, like pouring sticky medicine all over the floor and dealing with the struggle to clean it up. At times I write about what happened, at others, something totally different, but both take away the frustration and puts things back in perceptive. Keeping stress to the minimum I know is a great help. In someways it was my bad management of stress that brought me to the point of being housebound. It could be argued that if I had controlled it better and been less pigheaded I might not be in this situation. Equally though if I had let it win at the first hurdle, I could have been here sooner.
There is nothing in life that rules can be written for. Look at the work done these days to help ensure everything is as safe as possible. When a plane is built they have to meet all the rules and standards, but still they crash. There is always the unseen, the un-thought of, the combination that shouldn’t be possible, waiting to prove us wrong. If the answer was to write a users guide for life, then life would be simple, boring but simple. Even now I think I actually prefer the haphazard unknown to the predictable, it could be why I get along OK with MS, if there ever was an illness that knows of no boundaries this is it.
I suppose from what I have learned the most important messages I can pass on to anyone reading this with MS is, first constantly manage and adapt to your MS, it truly is a balancing act. Second do what you can to minimize stress and don’t confuse not doing anything with not stressful. To those who don’t have MS, you still need to manage stress, it will get you in one way or another, if you let it.