Life is a struggle sometimes and it certainly feels like that at the moment. I think as an autistic person I find change is harder to accept and more difficult to deal with; harder and more difficult than who though? It is tempting to write neuro-typical people here, but I really don’t like the labelling of groups. Aside from clones (it happens in the plant world all the time), everything is different whether on a minor or major front and nothing shows this more than people. Autistic people have certain traits that can be identified through careful questioning that non-autistic people don’t so basically there are two groups with a clearly defined boundary. The problem is that the test is only applied to people already suspected of being autistic so the question is, how many of those non-autistic people would actually be described as autistic? Would the majority of men qualify as is sometimes joked about?
But I digress. My life has become more difficult and harder compared to the life I have lived recently. I can’t tell you when the changed happened, though I could say that a week by myself was a very different experience than the one I have now. Is that explained by the having more people in my life? Possibly, I guess it makes sense that increased anxiety leads to increased stress which in turn can lead to physical and mental illness. I guess in reality the point is that I am struggling more now than I did last week so why not just live in the moment, accept the limitations and embrace what can be done today? Well ideally I want to avoid a repetition of this in the future if possible, so why not try to learn from the past? It all comes down to balance again. Living in the past can stop future developments, whilst being in the present always, might lead to lessons not learnt.
Ok so let me live in the moment. My brain seems to be more sluggish and concentration is harder to come by. Knowing what to write is harder to come by. So a bit of cotton wool in the mind then, what else? My stomach seems a bit queasy, my head aches a bit, there is a sense of an illness which seems to be not really there. Perhaps the most weird aspect is the pains I get. I thought it was arthritis at first, some of the joints on my hands seem to swell up a bit and they get painful. But it isn’t just the joints, the tendons seem to be inflamed in places too. There is a sense of achiness about many joints in my body, my hips, shoulders, neck, elbows and knees. Wear and tear then of a body that has seen a few rounds with death; probable I suspect. What doesn’t make sense is the randomness and severity of the pain.
Sunday was not a good day for pain. My right hand bit toe did not appreciate flexing. My right hip was causing me to wince when I got up or down, and I had to concentrate not to limp when I was walking. The fourth finger of my right hand was having a bad time and my right hand shoulder was noticeably more painful. In fact it felt like I could do with a right-hand side renewal. It was also this month’s orchestra rehearsal and there was a new recorder to be tested and I wanted to try it out. Playing the sub-great bass did not go well. My brain couldn’t process the notes on the page fast enough to tell my fingers what to do. It was all new music so I was sight reading so to put it mildly, I didn’t distinguish myself. The finger pain got worse and spread to my thumb and down my fore arm. My left hand was beginning to be painful too. I battled on though after an hour and a half, my anxiety was building and I could feel myself wanting to shut down and give up. Sometimes it is worth the fight. Sometimes it is possible to fight. I managed to keep going buoyed up with the occasion success. Thankfully I was being driven home, I don’t think I was in a fit state to hold a driving wheel.
Monday morning the pain seemed to have switched more to my left hand but I took some NSAID pain killers and managed a bike ride followed by a walk in the afternoon. More pain killers saw me through cooking dinner and through the night.
Tuesday was a different kettle of fish. My right hand was back to it normal, fourth finger a bit stiff but my left middle finger didn’t feel like moving. More pain killers were consumed. They had no effect and in fact the pain started spreading to the whole hand and by the afternoon I was unable to move my left hand or even twist my left forearm without some serious wincing. I doubled the standard dosage of the painkillers, sat down in a quiet room with a cup of tea (no mean feat, I couldn’t even tear a pair of teabags apart unless I used my teeth) and hoped that in twenty minutes things would be better. Work was limited to envisaging a new office design. I looked at my left forearm and compared it to my right one; was it more red or swollen? It didn’t look particularly different to me. Having a meeting took my mind off the hand for the most part and over the next couple of hours I regained the ability to move my hand and flex it a bit. I headed home on my bike a bit earlier than usual whilst I could still use my left hand to brake if necessary. More pain killers to stay on top of the inflammation (I assume) though my right knee became very painful later on that evening.
Wednesday didn’t seem too bad. The left hand continued to get better but my right hand thumb was now the source of most of the pain. Again, painkillers allowed me to continue and it wasn’t too bad until the evening when my right forearm started to get really sore having extended from the thumb. Feeling my forearm, it seem that I have a massive deep bruise in the middle of it though nothing was visible. As the evening went on I also felt that I was developing a fever in that I was beginning to feel cold when under normal circumstances I would be fine if not too hot. This was confirmed when I went to bed and despite piling the layers on the bed and a jumper over my head, I shivered and shook, my body trying to gain heat. Eventually the pain killers kicked in and I slept.
My hands aren’t too bad today though my right forearm is still rather sore so I am avoiding carrying anything in my right arm. The brain is still fuzzy, though for the moment the fever seems to have passed. Whilst playing recorders this morning I was once again struggling to concentrate. I kept miscounting my rests and then found the translation from written note to blown sound uncertain. If I was honest I would have left to give myself time to reset before continuing but instead I kept going. For the final set of music we had a switch around of instruments. I found the treble easier to play though maybe the familiarity of the music helped too. In the end I found myself less playing than following the score and trying to keep the group together as the descant player was not confident.
Today I found guiding the music much more enjoyable than playing it. It struck me as I walked home that maybe I should acknowledge more how difficult it can be for me to play music sometimes and not be so hard on myself. That would be more living in the moment. Equally though, I wish I knew what was going on in my body and that seems to need a longer term view.