One big let down

Why is it that my body never fails to let me down, at those very seconds that I need it to just be normal. I have been trying so hard to convince Adam that I am more than able and perfectly safe to be on my own. Proving it over and over by navigating perfectly my way through the house, so perfect that I haven’t even been touching anything other than the floor with my chair for 2 days. Then last night, just as I was getting organised to go to bed and with him standing just beside me, my right leg had a fit. All by itself, there is was jumping around like a lunatic, and he was stood there watching it, as I stutter and slur my way through a request for him to put my dressing gown in the bedroom. It was that half of thought of a request that triggered the whole thing.

This sort of thing happens all the time. If I am in the middle of doing something, then suddenly think of a change of plan, that hesitation in my thought, no matter how tiny, is then translated all over my body. I had been about to get into my wheelchair when I spotted the dressing gown lying on the other settee. My hesitation was on whether or not to pick it up myself, or ask Adam to do it for me. Bang, my body went nuts. First my right leg, the nerves making it literally jump up and down, with only my toes touching the ground. Then my voice, stuttering through a mix of words that don’t sound come out quite right and once more just get abandoned. Then my right arm, which I raised to point at the gown, held steady in front of me, I thought until I looked at my hand. Finally, my left arm was groping around in the air trying and failing until I looked at it to find the head of the bronze dog, in the hope that it would steady me. Both Adam and I have witnessed outbreaks like this over and over. It is like my brain can’t deal with the fact I had started to do one thing, then thought about doing something else instead, but decided to return to the original plan. All those thoughts are just too much for it, so it short circuits, then takes all the thoughts and actions, mixes them all together before just spewing out some nutty mess instead. Not only is it annoying, it has also frequently been embarrassing as well. Like so many parts of this illness, it’s OK when you are alone, a little upsetting when with your family and totally devastating in public.

Bodies are upsetting and annoying things. I once thought that they were simple straightforward and just there, but illness has taught me that they are none of those things. If there is a way that they can let you down, embarrass you or just spoil a moment, they will. If you have something like PRMS or Fibro, you don’t stand a chance. One second everything is calm and normal, the next you are a jibbering wreck and worse still, you are proving it to an audience. From falling flat on your face in the street; sitting in tears during a board meeting; standing shaking like a plate of jelly in the middle of a presentation or sudden cramps in you legs when making love, mine has done them all. It doesn’t matter how well those around you are aware of your health or not, there are still times and places for everything. None of those times or places was correct. At least last night I was able to stay standing on my feet, but that was the only positive that I could find. Adam had picked up my dressing gown and headed out of the room, I was sat in silence in my wheelchair, with only one very familiar thought, why now? The longer you live with chronic illness, the more it becomes clear that it really is some sort of sick joke. Worse still, the joke is on you.

Tremors have been to date another one of those phasic things. In fact, I went through one period that lasted over a year. I couldn’t keep my left hand still unless I thought about it. If I was just sat, talking or watching TV, you could be sure that my hand was sitting there quietly either shaking or jumping up and down. Thought would steady it, not stop, that only happened if I gave it a task to carry out. It lasted right up to the day that my hand died. I have often wondered if it was, in fact, part of the process. First minor nerve damage that caused the shakes, then total cut off, leaving one dead hand. As my hand returned, it wasn’t totally steady and still isn’t, but unless someone pointed it out to you, I doubt you would notice it at all. For me, normally, the worst tremors are still in my hands and I notice it most when I am typing. Ironically, until I started blogging and tweeting, I don’t think that I have ever typed quite so much. Again though, it is that hesitation, that shows it up the worst. If I just sit here and type without thought, my fingers move perfectly normally. If I catch the wrong key and I have to think about its correction, then my hands are off. The only answer is to totally stop, rest and start again. Like much of my health just now, the tremors are now just another one of those things that I live with. I don’t think there is a single symptom that is any longer phasic, they all seem to be here all the time. Unless, changing almost hourly counts as phasic.

I know that it is often a personal choice, as to the point at which we give up work, or even become housebound. But I can see how someone could quite easily be pushed into one or both thanks to just one symptom, not major events. For me, my dead hand forced me in, growing fatigue and exhaustion, held me here. But tremors could so easily be that one thing, that is just too embarrassing, to live in the outside world with. I know, even from just having one shaking hand and a problem with core stability that meant my spine twitched, that people stare. If I had been out somewhere with so much of my body in a muddle as it was last night, I would have been mortified. If it was happening all the time, it would drive many into wanting to hide. I somehow don’t expect that the new tests for benefits would accept that severe tremor attacks were a reason not to work. Knowing what it is like when people stare or are clearly talking about you, isn’t easy to live with and many people, not quite as adamant to continue as normal as I was, would struggle. I don’t know how long I would have pushed on trying to work if my hand hadn’t gone when it did. To be honest, I doubt I would have been working for another three years as I did. I was lucky, my job could be done from home and at home, I could pace myself to get everything done, resting when I needed to and working flat out when I had to. For most people, that just isn’t possible.

The twitch in my spine is probably the most visible symptom I have ever had. It’s hard to cover up when your upper body is jumping around, not dissimilar to a bobble head. These days it seems to be at it’s worst when I am tired and I have learned tricks so it isn’t seen. I can wedge myself into the corner of seats, which braces both sides of me. Lean forwards, propping my head on my hands, anything that just gives me that bit more support and stability. But people looked. The rude ones stared and chatted behind cupped hands, the slightly more discreet pretended to be looking elsewhere, then looked back as I moved my gaze off them. That is where that walking stick or wheelchair come in useful, not just for getting us around, but if you have either, the curiosity seems to wane. It’s really odd, give us an aid and the public dismiss us as ill. Let us alone, and we are nutters, lunatics and any other derogatory name you might think of, an object of amusement. I recommend strongly that what every your illness if there is a visible component, carry a walking stick, needed or not. Not only do you get a seat on the bus, but suddenly we are given a polite space to move and time to do what we need without angering anyone. Even if you are fumbling for change at the supermarket, that walking stick stops those sighs and huffs, it really is magic. Unfortunately, there is always the odd person who is never going to have respect for another living being, all we can do is ignore them.

I know that we have no option other than to live with the body that we have. No matter how annoying, how often it lets us down or embarrasses us, it’s ours and we have no other choice than to live with it and give it a little love every now and then, tremors or not.

Please read my blog from 2 years ago today – 02/10/2013 – Slipping into oblivion

Sometimes it feels as though I just don’t have the energy to do what little there is in a day to do, I mean how hard is it to just go and take a shower and wash my hair? Impossible apparently. It doesn’t seem to matter how….