I found myself feeling just a little lost yesterday afternoon. It just shows what happens when I try to be a good wife, Adam style, and forget about my routine. Every day when he comes home around 12:30, he always offers to make me some lunch and to bring anything that I might need to me here in the living room before he returns to work, not just once, but at least twice. I know, that what he is really saying is, “Let me do this for you, that’s why I am standing here, I came home for you. So let me, as that way I know you aren’t doing too much, and I know you are safe. I am able to do all of it for you, it doesn’t hurt me at all, it’s easier for me. Look, I have two good arms and two good legs, and all I want to do is help you. So please, let me do this for you”. He’s really good at compacting his words. Actually, I know because I have had both versions frequently. So for once, I said, “Yes”, and told him what I wanted for my lunch. Everything was fine, and yes, it did mean I wasn’t wheeling around the house for no real reason. The problem came at 1:30. That’s the time I normally have my lunch.
Over the last week or so, I have been turning it into a sort of new routine, one I’ve become strangely attached to. I never used to take a break, lunch was gobbled as I worked. But recently, I have been making lunch and sitting just in front of the TV, where I can actually not just see it, but read all those normal fuzzes things, called words. Because of my tray/bag, I can do this both safely and comfortable. There is something about this break in my day, that has suddenly become something I actually look forward to. That simple switch from one screen to another, creating this change and feeling of doing something totally different, is somehow refreshing. But when 1:30 came around, I didn’t know what to do with myself. I had this space in time, without any need to eat and nothing that I wanted to do. That’s not to say that I didn’t have things I could do, just not what I wanted to. I was at a loose end and it was odd. It is amazing just how quickly when something makes you feel good, that it becomes important for that feeling and for nothing else. It is the whole ritual that I have developed around it, the processes from start to finish that although it takes less than half an hour, I missed. I knew there was no point in just going and sitting in front of the TV, as, without the rest of it, it would be wrong. I wasn’t hungry, as I had been fed, but I was just sitting here twiddling my thumbs and trying, to come up with a replacement, but I couldn’t. I guess that it was a good example of one of those things, that was done for the right reason but came back to bite you.
I had a brain wave of sheer genius a few days ago following my most recent removal of the scab on my right knuckle. I don’t know why I didn’t think of it before, as I was sure from the way that the slightest touch seemed to be enough to keep removing it, that it was the craggy profile, not the body of the scab itself, that was the problem. I was sitting here filing a rough nail when it suddenly struck me, file off those bits that might catch. As the file that I use is a glass one and actually feels really flat, I was sure I could do it. I was really careful about ever stroke and it worked perfectly. Since then I had caught it three times, in exactly the fashion that I know should have been accompanied by shooting pain and blood, without the slightest problem. I have never seen a shiny scab before, but I now have one that catches the light and my eye when it does. It’s odd, but so far safer and with a much greater chance of actually healing totally than it has ever had. A new trick to add to my book of them.
I don’t know what is happening to me just now, my life recently has been like a rollercoaster. One moment I can’t find my own brain and the next, I have perfect clarity. The same can be said for my pain levels, my breathing, my balance and anything else you care to mention. The bad side of it isn’t just that I don’t know what is going on, but it is upsetting Adam as well. As is his way, all he seems to see is the bad moments, he ignores the entire evening of talking normally and jumps on the two seconds that I am again squeaking. Last night, I had to almost physically push him out of the bedroom, as he thought thanks to my voice, that I was upset. It wasn’t helped when I turned to tell him I was fine, that I nearly fell over. I am beginning to believe that my body is in collusion with him, as it only does these nutty things when he is around. Clearly, that is a lie, but it feels as though it does recently do it more when he is here to witness it, not that long ago, I could keep it hidden, now I don’t have a say in it. I thought for some reason that once I was in my wheelchair, that the number of times a day that my legs went from under me, or my balance would vanish for a second, would diminish. After all, I am only on my feet for the shortest of distances in the transition from one safe spot to the other. All those dangerous distances are now covered on wheels, so it has to be safer. Oddly, it’s not. I honestly believe now that it just has an array of daily tricks to perform and regardless of what I do, it will interspace them throughout the day at each opportunity, preferably if Adam is here.
I quite honestly believe that even if I made this house 100% wheelchair friendly, if we rearranged our lives and lifestyles to the best practice that any OT could come up with, that nothing would change. There is one thing that disability brings with it that is unavoidable and that is the unseen and the unexpected. I know that you could say that for any life, but the odds of my having an accident, even in perfect OT land, compared to someone who is totally fit and healthy, are a million times higher. No one can plan for those twitches that sends a cup flying, or the sudden jerking of your leg that means it is crushed against the underside of a table. The burns and bruises, will always be the same, in OT land or right here in my home, with my lifestyle. There is also another unavoidable fact, the progression of our health, bring a progression in the frequency of the unexpected. Of all the things that are suddenly active and happening to me in the past month, one that to me is more alarming than any other, it is those sudden jerking spasms. Until recently, spasms to me had been either along the line of grasping cramp like muscle actions or the rapid tremors. Prolonged spasticity is painful and can last anything from 30 seconds to hours, tremors on the whole for me are more annoying than painful. I have only occasionally been bothered by the fast jerking muscle actions in major muscles, limbs suddenly jumping around, happened only once in a blue moon. They are now happening more often, every few days or so. Along with them, another form has also increased, the single sudden and violent jerk like those many have when falling asleep. In the last month, they have been happening every few hours and sometimes every few minutes.
When your body suddenly appears to be out of your control, it is disturbing to say the least and dangerous at their worst. So far I have been lucky, but that luck hasn’t been missed by me, as it’s clear how easily I could cause myself damage, not to mention my home. Limbs aren’t supposed to do these sort of things. They are supposed to be under our control, not without minds of their own. It was something that I have slowly got used to in my hands, hitting wrong keys, not quite getting a proper grasp on something as my muscles had a different idea, is normal. For you leg to suddenly vanish, or not to obey the message to move, less so. To be sitting totally still and for your leg to suddenly jump, or you knee to straighten, not at all. Life in a body, where that body has as many brains as it has muscles, and those brains refuse to talk to their neighbours, far less the distant cousins, is interesting. Note the diplomacy. There are a lot of words that could replace “interesting”. I just wish I could remember exactly how long it takes for it to become normal. The fact still remains, it doesn’t matter how much cotton wool, accidents will eventually happen. I just hope that no one tries to, as believe me, as it is one occasion when I won’t play the good wife.
Please read my blog from 2 years ago today – 08/10/2013 – More than normal lose
There are always those I just can’t win time, you wake-up cold and decide to make some porridge for breakfast, something that went down beautifully but within seconds had me well beyond warmed up, I was sweating. Then within 15 minutes of taking off my top dressing gown…..