Through out the day I receive comments on my daily post in this blog spot, those comments arrive through twitter and here on the blog. I occasionally find myself worrying when comments are slow to appear, as I then become unsure about the subject I have chosen for that day. What I am doing here is writing about my MS, I don’t actually know if anyone out there in this enormous world has the same, some or any of my symptoms, as I stopped a long time ago trying to find a site that actually gave descriptions rather than just bullet-points. Each day I write about me and I wait for the feedback, to find out if it is just me, or other out there don’t just understand, but are also going through the same things as I am. I am in many ways working in the dark, as much as those reading are looking for answers, so am I, I have just turned the process on it head, I write and I wait, rather than trawling pointlessly never finding what I am looking for.
When I started I thought I might be lucky enough to attract a handful of others with MS and some with Fibro, I never expected to also attract those who are able bodied and just want to understand, and an hugely increasing number of people with other conditions, which have cross over symptoms. This has had a wonderful consequence for me as I am now also learning, I am learning so much about other illnesses, and my belief that I have mentioned several times, that there may be many thing different and may different names, but the common point between illnesses is astronomical. It doesn’t matter how damage is done to your brain, what matters is the effects you have to live with and what you can do to make life better, I leave the doctors now to worry about the why. What ever reason brought you here, you are all welcome and feedback is also very, very welcome.
Today has been a rather relaxed Sunday, which is slightly unusual as I find often that Sundays are the days that my MS does it’s best to embrace me in front of Adam. He tells me I have nothing to be embraced about, he is my husband and he is here to clear up, fix, fetch and carry, he is here because he loves me and isn’t going anywhere. Logic has never in my experience had anything to do with emotions, he has reassured me so logic says I should stop worrying, emotion still make me embarrassed. When he is asleep or at work I don’t worry in the slightest at either or both, my bowel and bladder giving way when I stand up. There is no one here, so I simply deal with it and once cleaned up, I move on with my day. With Adam here, I worry every time before I stand up, I worry what might happen, often I try to stay still and wait until he has left the room himself, then I move. He just want to help, but whether I clean up or he does it for me, the result is the same, total embarrassment. Dignity is something we all prize, I have found over the years to accept that dignity is always left at the door of a Doctors surgery or Hospital, but loosing dignity in your own home is totally different. My home is my sanctuary were our moral rules are the only ones that exist, we are a partnership and care for each other. I know if the tables were turned I would have no problem sorting out things for Adam, but that logic doesn’t work with this emotion. Dignity is a basic human right and how ever a situation is handled, I still find that that right is violated and I can do nothing about it.
I know I wrote just a couple of days ago about dignity, but that is the way of things, they enter your head for a reason and they don’t go away. This week I have the continence nurse returning to see me. I am going to learn apparently how to use suppositories, I know that is why I am going over it again, being prodded and pocked at by Doctors is nothing knew, this invasive process in my own home is, and that just doesn’t feel right, a minor thing but it’s bugging me.