Last night, has to have been one of the strangest evenings I have spent in a very long time. Most strange evenings usually occur because of other people, this one was down totally to me, or should I say my body. There is without a doubt, something major going on with my nervous system. I have noticed over the last few weeks that different area’s of my body, normally at different times, have been going numb. That’s numb as a sensation, not as a total loss of all feeling. It is without a doubt the sensation disruption that I have always suffered from more than any other, but lately, well it’s been all over the place. Sometimes it has been just a small area, like half the back of my hand, on others, it has been an entire foot or the entire side of my head. Normally, it is one area at a time, occasionally, a couple, but last night took the biscuit.
To be fair, it actually started about two weeks ago, gradually building, intensifying and spreading. Over the last few days, I have been getting spells of up to a couple of hours where numbness has taken over most commonly my lower legs. Usually, it has been one or the other, but I have had a couple of occasions when I have lost both feet, but only up to my ankles. Other times and probably the next most frequent is the upper side of my knee when I am sitting. For a while, I thought I was causing that, as I do have a bad habit of leaning forward when watching TV, and pushing my elbows into them, but it didn’t explain it at other times. It was my legs that started playing up yesterday first. I think I was still sitting here writing when I was first aware that my entire right foot was numb, by lunchtime, it was creeping up my lower leg. Which was about the time that my left foot joined in and did so suddenly, totally mirroring the other one. This sort of numbness is odd, firstly, because, for some reason, it makes the area it is in feel as though it is swollen or enlarged both inside and out. If it appears at a point where there is flex in your body, it makes using that flex difficult. For example, we all know what it is like to have a bandage around our ankle, just as it restricts movement in any direction, well this numbness does as well. I have tried to work out how it does that, as it’s not as though the area’s affected are swollen or anything, but that’s how it feels whenever I move, which is odd, very odd. When I woke up after my nap, well it had spread in my sleep, my arms had taken the rest time as a signal that this being numb was a great wheeze.
Having lost my left hand in the past, anytime it starts playing games, is worrying, I simply can’t help it. You might think that the fact you are right handed, losing your left hand wouldn’t really matter that much, trust me it does, you use it far more than you will ever know unless you too lose it. Waking to find that my hand felt pretty much as it did about seven months into its healing process, was clearly going to be upsetting. I didn’t notice anything going wrong last time other than a some weakness, then it totally went, but that doesn’t mean, there was nothing to notice. I woke to find that I couldn’t make a proper fist and the numbness was marked, just as it was in both my feet. While I was asleep, my diaphragm had tightened considerably, as had the intestine right across the top of my stomach. When they both go like that, it’s not only harder to breath, it is incredibly uncomfortable to sit. Sleep had made things worse not better.
My body was disappearing bit by bit. By 6 pm when Adam came home, the numbness in my lower legs had spread upwards to within 4 inches of my knees and there was a strange growing cold spot on my back. It felt as though someone was circling a couple of ice cubes round and round over the exact same vertebra. I didn’t mention it to Adam as I know without a doubt, he would have just spent the entire evening asking how I was, and worrying. If there is a pointless act, that is it. As the evening progress, so did the feeling that I was losing my body, there is no other way of describing it, I was losing my entire body and there was nothing I could do. In the past, all that was needed was movement and it normally went away, until I stopped again, it gradually returned. Any movement at all had been like a reset button up to date. No matter how long it had taken for a sensation to build, it took exactly the same time after reset. Yesterday, that wasn’t working. At it’s best movement did disrupt it, but as soon as I stayed still again, it instantly returned to where it had been, no build up, just a total return. I could have danced a jig and it would have changed nothing. By bedtime, that odd cold spot, well it had grown to a rectangle that reached each armpit and was about six inches tall and the right side of my head was numb as well. My breathing was tight, even using my nebuliser didn’t help, it was quite simply a case of the longer I was awake the more that seemed to be going wrong. I was nauseous, tired and I had quite simply had more than enough for one day. I went to bed in the hope that waking this morning would be the rest I was looking for.
It wasn’t. Yes, things are better, but a total reset, no such luck. The intensity of last night has gone, but everywhere that I had numbness, I still have numbness. Everywhere that I had pain, I still have pain and my breathing, well, it’s better but not at it’s best. Worst of all, I don’t feel as though I slept for a second, but I did, as the first thing I heard was the alarm, no night-time trips to the loo or the kitchen, just what should have been perfect restful restoring sleep, but it failed. Last night, I remember sitting on the settee making a decision, one that I can’t remember the thinking, only the conclusion. I was going to phone the OT this morning and ask one of them to come and see me. What exactly my thinking was, totally escapes me, the only thing that makes sense of it would be to see if I could convince them, to put pressure on Westmark about a reassessment for my wheelchair. I must have been feeling more desperate than I thought, as inviting an OT into your home, can be a dangerous move. I have come to the conclusion that part of their training is to develop a “takeover” attitude. You can forget that odd idea that we all have about our homes, being ours, or that we like it just as it is, they don’t believe either of those things matter. Nor do they actually listen to our words, they only hear theirs. Clearly, I don’t and didn’t like what happened to me yesterday, but is it really bad enough to go through that? Right now, I have my doubts.
I can still manage, after all, these are sensations. Yes, they do bring a slight loss of feeling with them, but slight is a million miles for actual. Sensations aren’t required in my legs, as I am safely sat in my wheelchair. I am not going to be able to damage myself as might have been the danger if I were still walking everywhere, but I’m not. Although I can see what my thinking was, I don’t think that now is the time, not yet. There isn’t anything that can be done about sensations, they are what they are. Are they an argument for a change of wheelchair, probably not, especially, as this is the first time they have been that intense. I think that this is a case of waiting to see what happens, then talk it through with Adam before I do something as stupid as picking up the phone to an OT.
Please read my blog from 2 years ago today – 03/12/2013 – Taught to be silent
Two Rooms Plus Utilities 