I have woken today actually feeling more like myself than I have for several weeks, I think this new working system that gives me just that bit more time to myself is really working for me. I have found so many times in the past that I have to be forced into doing something before I understand just where the benefits really lie, even when Adam came home yesterday he knew the second he came in that I was tired, what he couldn’t see was it was a good tired not a pushed and wrung out to last drip of life tired. I also found myself yawning yesterday, I know people yawn all the time, but I had noticed ages ago that once I hit the point where I have nothing more to give, I don’t yawn, I just sit there feeling dead. I know that compared to the average persons life, I did less than most would do on a Sunday afternoon, but it was just the right amount for me just as I am. There is only one problem and that is strangely that my brain is failing me today, I am suffering from a bad case of distractionItise otherwise known as no concentration at all, combined that with the feeling that I can do anything, I have already landed up on some strange sites. I honestly fear that I am going to get little of anything use done at all.
I woke last night at 4am, with a spasm running from my waist to my left foot, yes I know there are a lot of different muscles along that path and I admit that not all were involved, but it did feel like the majority, with one big gap, my thigh. For months now I have taken a glass of coke into the bedroom with me, just for this sort of situation, so I can easily take a booster pill without having to wonder all the way to the kitchen. There is one big flaw with that, every time I have needed to take a pill, I have also needed to work on the spasm to make it let go and let me be able to go to sleep. So once again I landed up in the kitchen anywhere, it takes about 15 to 20 minutes for a pill to kick in and when it is that painful, lying down in bed isn’t the best place to be. I nearly removed it all and put it back in the kitchen this morning with the intention of just accepting they are just there in the kitchen when needed, but strangely I have become attached to the fact they are in the bedroom just waiting for me. I can’t make logical sense out of it but I have developed a safety net attitude to something that doesn’t work.
It set me thinking a little about a lot of thing, like the routes I take through the house, staying close to walls, walking from one what I see as a safety point to another, when the truth is those points probably aren’t any safer than anywhere else, unless I had the luck of falling precisely towards them. I don’t know about anyone else, but I have yet to take a fall that I can control the direction of, if my legs decide to let go, well I go down in what every direction they choose. Yes if I am feeling dizzy then there is a point as I can then lean towards something or hold onto it, or even rest on it, dizzy allows that but it isn’t the only reason for falling any longer. For years when I fell it was always because I was dizzy and that was when I learned to wall hug, a typical behaviour of anyone with MS. We all walk along with a hand half ready to catch ourselves and doing what we can to walk in a straight line rather than imitating a weaving snake,or the town drunk, walls help a lot with that. In the last couple of years my muscles have grown weaker and weaker, these days they can just suddenly refuse to hold me any longer, just as they can then refuse to help me get off the floor that they landed me on. Nothing I have here can stop that happening other than trying to not stand any more than I have to, which works well with energy saving, but almost none of the things that I do to stay on my feet, are really that relevant any longer, fact they are a past safety nets that I still hold onto, just in case and I am sure that I will never let go of again.
I suppose we all hold on to things that have protected once, in the belief that they will protect us again in the future, just as some people have strange beliefs that a certain object brings them luck and if it’s not with them, something terrible will happen. Illness and I am guessing old age, changes the need for luck into a need for self-preservation, just as I have no desire to remove the tablets from the bedroom, as there just might be that time when I wake in so much pain that standing and getting out of the room would be impossible. With the huge amount of painkillers that are in my system 24/7 the chance of that should be around nil, but I can’t take that chance, even when it doesn’t exist. Fear is the strongest thing I have ever come across and one of only two things that I have never been able to totally control, the other being love, it’s just fear isn’t as nice. The level of pain I have daily is liveable, just as I said yesterday it is at a level where I can still function without being fuzzed out by drugs, that doesn’t mean that I haven’t felt pain so intense that I haven’t known what to do with myself. I have frequently and every time I have, I thought it was the worst pain I have ever had, only to be beaten by the next round of pain. As pain grows so does the fear, the more you fall, the more you fear and well that fear, it actually grows, all by itself as well.
I have fully accepted my illness and all it does, but accepting the fear that goes with it, was and is a totally different process. We all find our own way through, but I am reasonably sure that every single one of us, has a trail of physiological safety nets, as truth be told that is all they really are. They don’t hurt any of us, but I am reasonably sure that when it come to all the things they are there to protect us from, 99% won’t save us in any way at all, they just delude us into feeling OK and that is something we all truly need.
Please read my blog from 2 years ago today – 28/08/12 – Mind Journey
you poor thing, your so brave in what you are dealing with. All credits to you x
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