To close

In the space of two days, I have now sent two glasses of coke flying, spilling their contents over things that really don’t need liquid on them. It is I know something that anyone can do especially when you don’t have great dexterity, poor eyesight and a failing ability to know exactly where your own limbs are, but it’s not something I normally do. Nearly all the things that are wrong with me have developed over time, I suppose that is the proof that my PRMS really is more progressive rather than relapsing, but it does have the advantage that I have also learned ways of compensating so that accidents like these don’t happen. Like every person alive when something happens once, well you think nothing of it, when it happens twice this soon together well then you start to wonder. That, of course, is a problem all of it’s own, as it means that I will now be over compensating which is reason enough to cause the same thing or something similar. I actually don’t think I have sent anything flying for a while now, my favourite is to either drop completely the cap of the coke bottle or fail to pick it up and send it rolling off the counter and off across the kitchen floor, mind you I don’t take quite so much care around the unbreakable as I do the breakable, on the good side I didn’t even damage either glass. From childhood, once we have mastered the use of our hands, we all just expect them to do what we want them to do, but it is one of the earlier things that I noticed, I used to constantly drop things, the smaller the item, the more likely it was to end up where it wasn’t meant to be. At different points I would also have spells when my left hand would appear to have a tremor, but only when I wasn’t using it, the second I stopped resting it, it worked perfectly, the compensation was clearly easy, just never let it lie still. To this day, I rarely let either hand do nothing, I am always touching my thumbnail to one of my other fingers, or as Adam noticed early on, running my thumb over his hand when holding it, those small movements once were enough to stop it totally.

About a year after my diagnosis my left hand wasn’t just showing a mild tremor any longer, it was an unmistakable one, I couldn’t keep it still, small movement wasn’t enough but bigger bolder ones still worked. They may have worked, but they looked silly and were even distracting to myself, I learned to just accept that my hand was going to dance around and there was nothing I could do. Oddly when my left arm totally died, as it recovered it did so without the really bad tremor. If was tired or over-stressed it would return, but once again I could control the milder twitching simply by keeping it moving ever so slightly with the type of motions, no one paid any attention to. I don’t remember now when my right hand joined in, my fine motor skills used for doing up buttons and so on where as bad as my left hand from the start, but it never seemed to just dance around at rest and even now, although it does it, it only does so occasionally. Oddly, both the glasses I have knocked over in the last two days, where both sent flying by my right hand, if it had been my left, well I wouldn’t have been quite so surprised. Recently I have noticed that my right hand has been knocking into things a lot, not hard enough to send them flying but hard enough for me to be aware or even to jump in belief I was going to have to catch it before it does any damage. When I put the pieces all together, well I am coming to the conclusion that it has more to do with awareness of limb placement, more than anything to do with my tremors or twitches. I know that I noted a few days ago that when lying down I am frequently unaware within a very short period of time, just where my arms and legs really are. I often find that the messages I am getting say that my feet are crossed when I know that is impossible as my upper legs are telling me they are both flat on the bed, exactly where I put them with my feet in line with them. The same happens with my arms, every time I have hit something recently, I have been totally surprised as I honestly didn’t think it was possible, I was sure that they were nowhere near the item they touched or sent flying. It looks as though I have something else to keep an eye on and not just literally as my spatial awareness seems to be failing.

I had another full nights sleep last night, well almost, I did wake long enough to poke Adam in the ribs and tell him to roll over as he was snoring. Luckily he stayed quiet long enough for me to fall back to sleep as although I didn’t bother to look at the clock, I knew instantly that I was nowhere near able to get up and start my day, the next thing I knew the alarm was screaming at me. I was so tired even then, I guess the fact I didn’t sleep that well yesterday afternoon had caught up with me and I was going to heading into another one of those days of just wanting to sleep. It stuns me how just a few minutes of lost sleep, can actually cause me to struggle for so many hours after. I had forgotten when I woke this morning that I had actually been about 15 minutes late in going to bed last night as well, as our TV programs had run slightly over the 9pm ending I usually manage to achieve, it takes only a couple of unscheduled events to throw me totally off.

I had gone to bed as normal for my afternoon nap just after 3pm, at first I thought I would sleep with ease but as I lay down I was suddenly aware of pain really low down in my stomach. At first I really thought that at last I was going to be heading to the loo, something that I actually didn’t care if I missed some sleep over, just to be free of the almost constant discomfort I have been going through for weeks now. I lay there half trying to go to sleep and half waiting to get up again, then suddenly I felt the pain change and shoot the whole way upwards on my left side of my stomach and stop dead, it felt like I now had a totally solid pole inside me and I knew that my dream wasn’t going to come true. I did sort of doze for a while, I had to have done as when the alarm sounded I knew I hadn’t been lying there awake for an hour and a quarter. As soon as I sat up I was reminded of what had happened when I lay down, nothing had changed as I slept and the feeling of not being able to bend forward comfortably was unmistakably the same feeling I had had earlier. It is a feeling that is still with me this morning and one I made worse last night by helping Adam to consume a large bag of crisps and a bowl of dip, I honestly am getting to the point that I although I want to eat, I don’t think I have any real space left inside to add any more. This isn’t the first time that I have found myself unable to even sit comfortably due to my insides, but this is without doubt the worst it has ever been, I am not only in discomfort to the front of my body, it is now in my back as well, it’s a constant feeling of pressure from just below my kidneys right downward on both sides. I realised last night that my blaming the chair we have on loan for the fact I couldn’t sit comfortably, was wrong, this discomfort is mainly coming from myself, although the chair isn’t the best.

 

Please read my blog from 2 years ago today – 14/02/13 – ValentinesĀ 

Thursday morning, another week heading off to an end, and yes I do know it is Valentines day. To me, it is one of those over hyped days that is due only one thought ‘forget it!’ I really don’t get the world’s desire to follow like sheep and spend money or things that no one actually needs, if you want to tell someone you love that you love them, then just say it, every day……….

2 thoughts on “To close

  1. ALL YOU HAVE TYPED IS LIKE AS IF YOU WERE IN MY HEAD.I HAVE BEEN PUTTING MY HANDS IN MY POCKET, AS I AM TIRED OF THE SCRATCHES AND BRUISES THAT NEVER HEAL.THE STOMACH PROBLEMS, FOR ME STARTED A LOT EARLIER.IF YOU CAN LIE ON YOUR TUMMY, IT HELPS.IF NOT, STAND AGAINST THE WALL((FOR BALANCE)), AND STRETCH YOUR STOMACH MUSCLES. IT IS PAINFUL TO DO THIS, BUT I FIND IT SOMETIMES HELPS. I WISH THAT I HAD REAL ANSWERS FOR YOU, BUT LIKE YOU, I AM STUMBLING IN THE UNKNOWN. ALL I CAN DO IS SHARE MY EXPERIENCE,AND PRAY THAT ONE THING HELPS YOU, IF ONLY FOR A SHORT TIME.SENDING HOPE AND LOVE TO YOU AND ADAM.YOU DON’T NEED VALENTINE’S DAY, TO KNOW TRUE LOVE….NEVI…CANADA

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