Yesterday passed quietly, too quietly considering the night before, even when I woke yesterday I was surprised by how light the shadow pain was in my thighs. It is often the shadow that makes spasms so difficult as the spasm lasts just a few minutes, the shadow can last for hours and often when in your legs leave you limping for the rest of the day. Thinking back over the day, yesterday was actually rather uneventful, which is probably why I found myself paying closer attention to what has been the normal end to my day for quite a while now. I don’t know why I haven’t written about it before, I suppose when something is everyday and normal, well it often doesn’t seem worth taking note of, but that doesn’t mean it may not have a value to someone. Once sat on the settee and my PC is closed for the day my evenings really do follow a simple pattern, Adam and I watch TV, I fetch two drinks during the evening, first a gin and tonic, followed by a glass of coke which I bring back with me after I have taken my evening meds at 8pm. The rest of the evening I am sat in one place, just watching what is happening on screen and chatting, very much I am sure the same as almost any couple, the difference appears at 9pm, I go to bed, leaving Adam alone for the rest of the night. Nothing of note as I said, except for the last few minutes of my time awake.
Adam and I usually stand up almost at the same second, he picks up my glass and heads to the bedroom to collect the one still sat there from the night before and to replace it with the glass he took with him from the living room. Every evening has it variance, some when I first stand up find me holding onto the head of the rather over large bronze dog we have by the settee, sometimes, to steady myself as my balance is often off, others because I get a spasm in my spine and the back of my legs. it always throws me bolt upright for some reason, it’s not a position that helps deal with it, more a case that it still has the ability to shock. Either way, I stop for a few seconds just long enough for it either to settle before I can take my first steps towards bed, I have never been able to work out why, it could be the settee, or just the fact that by that time of day my body has had enough, but I always walk incredibly badly at that time of day. Every step seems stiffer and more painful than they ever are, even just an hour sooner when I fetched my meds, suddenly it takes twice as long and I have a clear roll to my steps, as though I am having to sway side to side to get my legs past the carpet, rather than dragging over it. Reaching the door always seems like an odd combination of relief and fear, relief as this is the first milestone reached before sleep and fear as I have another 6 steps to take across the hallway. During the day the hallway doesn’t bother me so much, even when I am making the exact same journey across the diagonal where there is nothing to hold onto and before Adam decides to help me from now on, I can still do it. The fact is that during the day I am far more likely to fall than I am at night, I have a long time ago worked out that if I just took things slower, I probably wouldn’t fall at all, other than on the days that my muscles just collapse but slow is the way to go. I had noted myself just how easy it is to know what is playing on my mind, just watch my hands, if I have one outstretched a couple of steps shy of a door, I am feeling not too good and nightly it is reaching out ahead of me. Once I have the bathroom light on and the door closed behind me, I normally stop at the sink for a few seconds holding onto with both hands and resting on a deep breath. Feet apart and stomach pressed into the lip of the sink, I can then cleanse my face and spread on the serum and cream that I hope might just this time remove some of the signs of my past nearly 54 years, before heading to the toilet.
What happens next will determine whether or not I will be able to sleep right through to the next morning or if I will be once more making the journey in another few hours. My bladder doesn’t fully understand the importance, or maybe it has just discovered that it has a power over my life and is enjoying its moment of glory. Some nights I sit and wait, trying to relax and to just let things happen, sometimes they do, sometimes they don’t, but never is it just a simple straight forward procedure. Yes, I know I should just use the catheters and they keep telling me but I don’t like them and unless I start having continual bladder infections, well I will continue to not use them. I have got used now to sitting there while my body decides what it wants to do, pretend it has three bladders or more, each to be emptied in turn or act as if it there is nothing there, other than the stupid dribble that I can’t stop, followed by the drips and drops. Last night as often happens I quite simply got fed up trying and gave up, sitting down on the loo is easy, getting up despite having a specially raised loo that is supposed to make standing up easier, I often find myself struggling with my balance. There is something about the angle that it launches me into the room, that leaves me feeling as though I am heading forward into the room, being led my head, rather than it pushing me upright. I think it is fair to say that about 90% of my true falls I have ever taken, have happened actually in the bathroom or just outside the bathroom door, I blame several things, but top of my list is standing up from sitting on the loo. The shape of our bathroom means I have two minor changes in direction from the toilet end of the room back down to the door, the combination of actions just don’t seem to work well for me, add in that most time I leave the bathroom I take a sharp turn into the kitchen and the whole area is a nightmare for someone with balance problems. The kitchen is exactly where I head each night so that I can put the facial cleansing wipe into the bin, before having to backtrack then head diagonally across the empty hallway towards the bedroom. I know the house so well that once the bathroom light is out, I don’t turn on any others, so finding Adam standing in the hallway is often quite a surprise, it all depends if the light of the TV is showing me his silhouette. Last night by the time I found him I was grateful to have him to hold onto, just a few moments as we cuddled and said good night.
I honestly think that he can tell just from how I hold onto him, how I am feeling at that second, last night as he often does, he offered to help me go to bed, but as always I declined. It has been 9 years since he last saw me naked and with the way my body is now, well I am not in a hurry to go through that embarrassment, even though there are nights that I could do with a little help getting rid of my clothes, I am happy for now to keep managing on my own. When I reached my bed, having got rid of my dressing gowns I was last night highly relieved. From the second I had stood up in the living room, to that second I had sat on the edge of my bed, well I had feared the possibility of not quite making it. That is nothing unusual, I don’t know what it is about that time of night, I know without a doubt that I could right this second go and repeat the whole process and I would be able to do it in half the time and without fearing all the time that my next stop will be the floor, yet nightly I struggle, not because the help isn’t there, it is, but because I don’t want to give in, to ask for what I know I still don’t need in a way I will in the future and I don’t want to meet the future, not today.
Please read my blog from 2 years ago today – 16/01/13 – The heart of a spasm
Just before I went to bed last night I was gripped by extreme pain, pain that I had to cover up as I knew without doubt that Adam would be on the phone getting me an ambulance that I was totally sure I didn’t need. The pain in my chest that I haven’t now had for several weeks, was back………..