Adam is at work with it being Monday, but although for most of the weekend he seemed to be avoiding setting up his new laptop, he eventually got round to it yesterday afternoon. I honestly think he was worried about it with it being a Mac and not a PC, I kept trying to encourage him to just plug it in as I was sure that it wasn’t as bad as he imagined. Yes, it was going to be different, but there are a limited number of possibilities all thought up by humans, so how different could it really be. I gave one more hard push before I went for my nap and when I got up, he was on Ebay and happily telling me about all the new cool things he was discovering as he used it. I suppose we all don’t like facing something new, we are comfortable with what we have and how it works, this though highlighted just how different Adam and I are when it comes to technology, I wouldn’t have been able to wait more than a few minutes after he got home with the adapter it needed. I would have been straight in there and searching out everything that is different and wanting to see why. When we met I already had a PC at home and I was online and learning how to program, not the norm back in 1998, I am so glad that dial up was replaced with broadband! Adam though couldn’t understand why I was so in love with it all, he just wasn’t interested, I think strangely it was a couple of years later when I introduced him to Ebay, that got him into it and he now is worse than me, with his smartphone and so on and now he has one more step under his belt that I haven’t taken, he is learning to use a Mac.
I tested my theory last night to see what happened if I sat still on the settee and I was spot on, in fact, it was kind of strange as even though I was really trying to stay still, the second my body started to shut down and before I could stop myself, I moved. It was one of those instantaneous reactions, at the exact second I was aware it was happening, I jumped forward on the settee and reached for a cigarette, which kind of made me wonder how many times over the years that my reaching for a cigarette was because I felt the shut down starting and the cigarette was a cover up. To date I have never been able to make something happen, the only thing I had ever managed was the trigger of lying down, which clearly I got wrong it wasn’t the lying down, it was the lack of movement. I tested it several times when I was sat here after I finished my post and I learned something else, do it too often and I get incredibly tired, keeping moving keeps me awake and keeps me functioning. I can’t help wondering if all this has actually been happening for years, as the best description of myself before my MS took full hold of me was that of a bluebottle on acid, I never stayed still. I was brought up to never waste time but I was beyond anything that I could put down to just that and if anything it got worse the older I got, not better.
It’s strange how one little discovery can set you off in a whole new direction and start you questioning things that you thought you understood, even if it’s not something that has been happening for more than 10 years, I think it is highly likely that it is behind my constant fidgeting. It seems that it doesn’t matter how well you think you understand what is happening to you, or how well you think you know your own body, it still holds secrets that are just waiting to be discovered. In some ways, it seems that you never get past that point where you are still piecing together all the clues trying to find the answer. Even though I have my diagnosis and I know what is behind it, 13 years on, I am still picking up new clues and new developments. Why does that surprise me, all I have to do is read back what I have written and it is a constant trail of new discoveries, new development and changes in the old, I just don’t seem to have the dictionary meaning of progression written that well in my mind. I guess I have never been truly able to let go of the miracle that doesn’t exist where I will wake up one day and be fine, no pain, no spasm, just normal body that functions properly, I guess that none of us let go of that totally no matter how long we live with our person collection of monsters. This one though is different, it’s different because I clearly subconsciously have known about it for a while, but although the clues were there I just hadn’t pieced them together.
It was over 2 years ago that I first felt this effect on my rib cage, that was what cause me to get an appointment at the hospital and to get my diagnosis of COPD. When I got that diagnosis the consultant said then that my MS was as likely to stop me breathing as my Emphysema, I knew then what he was talking about, but I didn’t know that the same effect was going to happen over all of my body, not just my lungs and ribcage. As I said yesterday, when I go into ‘shut down’ all my muscle become heavy and slowly stiffen, somehow facing the fact that it was possible for it to stop me breathing was easier to accept than the possibility that it could stop my entire body from working. A lot can happen between now and then, maybe even that miracle might appear, for now, it is on the list of things to keep an eye on and see where it goes next and what the next step will be.
Please read my blog from 2 years ago today – 08/09/12 – Hospital Dream
I had a letter arrive yesterday afternoon from the hospital and I now have an appointment next week for my Ultrasound scan it’s on Thursday afternoon so I am going to have to change the appointment I made with the Therapist who is meant to be here on Wednesday. I don’t need to try to know that the result will be that I don’t have the energy to manage both in the same…..