I am getting more and more tired by the hour, well that is how it feels, I woke this morning to find I was anything but awake. Getting dressed a process of pulling on my pyjamas and a pair of socks, took twice as long as normal, it was as though my arms were made of a spongy mess without the strength to hold even the lightest items in the required position. Everything was in slow motion and every single step along my normal routine, just that little bit harder. On of the common problems with MS that I do actually have the tools right here in the house to deal with, is emptying my bladder doesn’t just happen, it is a stop-start, dribble, run, drip by drip process. Using catheters means I can be sure my bladder is empty but it is a fiddle and time consuming, especially when you are not really awake, so I sat there doing what I know works best, trying to relax and just let it happen. The level or relaxation required is almost to the level I would use to go to sleep, but trust me sleeping on the toilet is not a recommended activity. By the time I left the bathroom and was taking my first step into the kitchen, Adam had already found his way there before me and was in the process of opening the curtain. I hate it when he does that before I have had time to wake-up, the light seems to attack my eyes, almost like having acid thrown in them, so with half closed eyes I fetched a glass for my coke whilst mumbling “good morning”, before heading through to the darker safety of the living room.
My morning continued to just float, my PC seemed to flash into life, now I know it is quick but it isn’t that quick, life around me was running as normal it is just me that has taken on the life of a snail. Even once I started to open everything and set up for the day ahead, I still wasn’t with it, there was no speed in my actions, no ability to just click and move things around the page, or enter the overnight figures as I do every morning, I was taking familiar steps, but in an unfamiliar way. Adam always checks how I am before he goes to work, but I knew from the way he asked it this morning that he was really asking it, not just checking, he to had noticed I just wasn’t quite right, not quite there and not ready to join the world right then. For nearly two hours I have been fighting the desire to just go back to bed, to give in and just lie down again, to let my body drift, just as my mind is. Every mouse click, every typed letter, change of screen, a sip of coke or puff on me e-cig, have all left me not wanting to move again, but I have to, I can’t just sit here like a manikin, I need to breathe, drink, move and keep living. All that has kept my going is all those people out there who expect to see me online, who read my tweets, retweet and send messages telling me how much they rely on them to lift their day, I couldn’t let them down. I have either built a monster, or I have built a body of motivation that won’t let me give in and just do what sick people do, sleep, stay in bed, rest and let their bodies do what they want. The fact that I have pushed on and that I am still sat here, tells me it is my motivation.
I have had morning similar to this in the past, but I know this is the worst yet, this is the life of someone with MS, you would see the same person sat here who has sat here for 7 years, but inside, inside I am slowly changing, winding down all the time as the pain and sensations wind up. I might not physically be doing anything that I haven’t done before, but somehow it is exhausting me physically, pulling my physically down, it’s not physiological, this is a physical thing, this is all about energy. What comes next, I don’t know, but as I said yesterday there is a change coming, something is shifting and things that once were just annoying are becoming major factors in my daily life. It is like somewhere inside of me there is a dial, that for years now has slowly been turning up, increasing the intensity, it is now passing that point of comfortable to live with as long as the medications hold out, into just that bit too much, that single semi click past the line of distortion. I have spent years trying to understand this thing, to get a hold of it, to stay just one step ahead of it, I get the feeling that I am now less than an inch ahead of it and it is still catching up.
How can increased sensations, mad feelings and loose of nerve control actually exhaust me? Yes, I am getting more spasm, lots of small tightening of muscles without my wanting them to, that used energy, like it or not, but that isn’t enough to be doing this to me. My energy is being drained by doing nothing, that is a new one, I always had to do something for that to happen, I have had to now for years work out what energy I have and a lot it to tasks to get me through the day. Now I have woken with a feeling of negative energy, it can’t be negative I know that, if it were I wouldn’t have woken up, but that is how it feels. I have nothing to use, not one single drop and everything I do is draining me even further. Somewhere in what I have written recently, I am sure there is an answer, that’s why I have written about the things I have, as I have been trying hard to make some sense of it before it hit this point. I read through much of it yesterday, but either I am missing it, or I am too close to see it, as in I don’t want to admit to myself what others might see without looking.
The doorbell just rang, it was the postman, with a parcel for me. Just going to the door fetching the parcel and opening it has left me with twitching nerves, in my spine, hands and legs. The feeling of my skin being alive was a background factor, but now it is active big style. 20 ft to the door, 10 more in the kitchen and 25 back, hardly a marathon, but it might as well have been one. I normally work on the basis each day that I will do that 10 times, between fetching things, going to the loo, to bed and so on, right now I wouldn’t make it even once again, I am going nowhere in a hurry, or even at a snails pace for an hour or so at least. There has to be an answer, a reason, if I can find it them I have a chance of changing it, like everything else there is always a way around, a route that will achieve the same result, but without causing the same reactions, I just have to find it.
Please read my blog from 2 years ago today – 11/06/12 – Transferring, adjusting and changing
Adam went on a cleaning spree yesterday so I am happily looking around as much improved view. I have collected a rather large amount of crystal over the last few years. I don’t ever remember not loving Crystal, as a child my parents didn’t have a huge collection, but the had beautiful glasses of all types and a few bowls for desserts, I remember also a set of Grapefruit…..