Taught to be silent

My body has been playing tricks on me again, yesterday at around 2 pm just after Adam had returned to work, I suddenly lost feeling in the entirety of my left arm. In the first few minutes I was astounded by it, especially as I was still managing to use it without any problem at all, I was actually still able to type, touch typing without any touch, does sound somewhat impossible, but the truth is as long as you don’t look and put full trust into what your hands are doing, well you type. OK yes there were errors, lots of errors but I was still more than about 60% correct, but I couldn’t actually feel the action of finding the key. Of course I had to then start playing with it to see if I could find out what was happening, I pinched, punched and poked at everything I could think of, other than my spine, well I can’t reach that, but I could feel nothing. There was a feeling of heightened fatigue at my shoulder joint, but from that point onwards, nothing. I know I have mentioned in the last few weeks other strange things happening in that arm, which meant I wasn’t actually surprised or over concerned by it, more fascinated and intrigued as to what might happen next. It lasted about half an hour, then slowly it started to come back, just as you might imagine a limb would when the circulation has been cut off, something I knew hadn’t happened as if it had I would have been able to still feel any attack on the limb, just dulled but still sensations. The first thing I felt from the moment it died were pins and needles and a similar sensation to reawakening. I can’t be sure but I have a fear that once again my left arm is getting ready to die again. When I lost it last time it appeared to others to happen over night but that wasn’t actually the truth, I had about a month of strange sensations and weakness that meant I dropped almost everything at some point or other. I did wake one morning to find that my hand had totally died, it wasn’t just sensation, I couldn’t move it at all and tests showed that there was no nerve reaction from my elbow downwards. I took that in my stride just as I am this, so many strange things have happened over the years that I no longer fear any of them and normally find myself laughing and doing my own tests over and over again. The only thing still not back to how it was before is my shoulder, there is still this feeling of a fatigued joint, something I don’t think I have ever had before, fatigue is normally found in muscles, not joints.

I guess that anyone who has lived for as many years as I have with a body that is totally capable of surprising me many times a day, you do start to not just accept, but to want to test again and again, almost like playing with it, to see what it is actually really doing. I am sure there will be many many things ahead of me that I have never felt before, but right now I can’t think of anything that would really shock me, or scare me. What ever happens I have found that in time, most things return to almost as they were before, never the same but close. That is one of the oddities of the form of MS I have, most people have relapse remitting, they have a flare or even something like I had yesterday, but they always return to normal post the flare. The next most common is primary, or secondary progressive, no flares just a steady downwards without any remission at all. Then their is me, I have progressive relapse, always going downwards but also with flares which never totally fix themselves, they do improve, just like my left arm, but never return to were they where before. With so many years of it playing tricks, you do become somewhat blasé about the whole thing, if I didn’t I would by now be locked in a hospital somewhere, not because I had been driven mad, but because I would have driven all the doctors mad by my turning up every couple of days with something else to tell them. So yesterday my arm lost sensation, no big deal, just one more thing that I know has happened and I will probably in a couple of days forget all about it, unless of course it has more acts to unfold in it’s play.

I have actually often wondered what it would be like to live without all my collection of illnesses. For over 30 years now I have lived with things going wrong, with pain, exhaustion and all the other things that are all part of my list of illnesses. I have many times in the past been dismissed, even by my own family, as some one who had to make everything melodramatic. What none of us knew at the time was I was just showing the normal things for someone who is really ill, not someone who was taking small normal things and exaggerating them for effect. I remember when I was in hospital about 8 years ago to be taught how to use catheters, the ward sister had run some tests on me a few weeks before, to see just how bad the problems I was having were. She couldn’t believe that I had been living so long with a bladder in the state mine was, without it being dealt with before. I told her my story and how I had eventually landed up there talking to her, she listened to me in silence, then asked me if anyone had apologised for the way the NHS had treated me, I said no. She took hold of both my hands, looked me straight in my eyes and apologised on behalf of the NHS for their years of appalling treatment towards me. When I told my family what I had been diagnosed with and that all those years of my telling them I was ill, were real, not one apologised or even seemed to be able to see the bigger picture, to this day only one of them have been to see me since I became housebound.

I am sure that my now casual reaction to trauma, has a lot to do with the way I was treated by others for so many years. When people don’t believe you, eventually you stop telling them that anything is happening, eventually you even stop believing yourself and put it down as you being weak, not able to cope with things the rest of the world take in their stride. Diagnosis changes all that, but it doesn’t change the way you have learned to behave, just so you can be accepted as part of the world and not an oddity with clear a mental problem. I don’t remember ever not being ill, nor do I remember not ever taking those traumas in my stride silently, just so others think I am normal. Who needs a left arm any way!

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