We can live with it

There is something wrong with my right hand and arm this morning. My thumb and index finger, right up to my wrist and slightly less so, right up to my shoulder following that line, feels as though they have been anesthetized. When I first woke this morning I could hardly make a fist, but that quite quickly passed and normal mobility returned, but it left this numb and tingling feeling behind it. Very much like your face feels after a bad visit to the dentist. The fact that it is working perfectly normally now is good, but after losing my left hand completely 10 years ago, I have lived in fear of this. It took about three months before I was able to do anything of any importance with it and nearly a year to return to normal. The whole idea of it happening again has been my greatest fear, especially to my right hand. When the left hand went, I had about three weeks of odd things similar to this happening. Feeling, sensations, strength and mobility came and went until the morning I woke to find there was nothing there at all. I couldn’t even hold it out in front of me and my hand just hung limply at the end of my partially outstretched arm. That whole memory has hung around me like a spectator waiting to pounce again. Well, at least in my head it has. This is the closest I have come to it and I have to admit that I am finding it somewhat worrying. There is nothing thought that I can do but wait and see what happens.

Oddly it was just last night that I got around to telling Adam about something odd I had noticed in the last few weeks with both of my hands. At first it was just when I went to bed and was lying there motionless and silent. There was a deep ache in both hands, in exactly the same place, from the tip of my middle and index finger right up to my wrists. It had slowly been growing, not as far as pain, just this ache that appeared only when I wasn’t moving my hands. I found it at first rather fascinating, there was no reason that I could find for it and the fact it was identical in both, just made it even more attention-grabbing when it appeared. It doesn’t matter how I examine what I do throughout the day, I can find nothing that could be causing it. Yes, I could cause the same ache in my right hand by lifting a full glass of coke, but there was nothing that triggered it in my left. This isn’t the first time I have been struck by aches and pains that are mimicked perfectly by the other side of me, but why it happens, I wish I knew.

At the close of yesterday’s post, I touched on the subject of the way that I deal with pain and sensations that become clear are going to be part of my life forever. I can’t remember when I started doing it, but I know that I have been doing it for many many years now. There is a point where I have to take a decision not to focus on or be governed by any pain or change that won’t or can’t be fixed. If I didn’t, I would have driven myself mad many years ago, rather than coping with my life as it is. When I came back from seeing the consultant and had the news that there was as I already knew nothing they can do about dead nerves and any operation they could do, would probably leave me in a worse mess rather than helping me. I was so glad that that I wasn’t facing having a stoma and that they had given me several things to try which might help ease some of it, I was delighted. Delighted but not stupid enough to believe that that was the end of it. I knew the pain wasn’t just going to vanish as he did, as he said quite pointedly that finding an answer to that, was down to me. As he said, I either had to learn to live with it, or I had to pursue some way of removing it such as alternative medicine, or more of the conventional medications I am already on. I have gone for a combination of two of them.

To those who are already long-term sick, I am sure you have worked this out for yourself, but I wish someone had explained it to me, rather than having to find it out by myself. You can’t just stop feeling pain if only we could, but you can work with it and you can put it in its place. There isn’t a single person alive who hasn’t had a pain that has seemed to just vanish, when, in fact, all that has really happened is you were busy and stopped thinking about it. Simply by shifting our focus, like giving a child a sweet or an ice cream, the pain moves into the background, not healed, just put in its place. Part of what I do is based around that theory. I work hard on not focusing on it. When it is severe and I have to deal with it, I just get on with it, as there is nothing anyone can do about those peaks. The rest can be pushed backwards and can be forced into just being part of the background of pain I live with all the time. I use distraction all the time. It is built into everything that I do and is why I used to never stop doing things. When I was mobile that was easy, there was always work or housework that needed to be done, or something I could do from my long list of hobbies. I never just sat there moping about my pain. It’s harder now, but as you know I stay as busy as I can. I doubt anyone can find a point in my day where I am not keeping my brain busy if not my body and it works.

It isn’t really a surprise that I along with everyone else has the most issues with pain in the evening. We have stopped, we are doing nothing but sitting in front of the TV and that pain always makes itself known. It just gets worse when we go to our beds, as the TV’s minor distraction ability is gone. What I do though isn’t just about distraction, it’s about losing the focus on any individual pain and turning them into a mass, not a point. When I was writing all the time about the spasms in my diaphragm and the constant ongoing pain in my intestine, I was over focusing on that pain and its cause, I felt it all the time and it didn’t matter how busy I was, I was still thinking about it. My week in bed due to my chest was actually a blessing, as it broke my focus and started the process for me. Without it, I would have had to be hard on myself, forced myself every time I caught myself once more thinking about, or feeling it alone above all other pain, to think about something else that had nothing at all to do with pain in any way what so ever. If you like, forcing myself to ignore it. I have even gone as far as doing those psychobabble things like visualising it and pushing it away from me. It may sound silly, but if you don’t tell anyone what you are doing, no one needs to know you have just joined the loony brigade. For those sudden high spikes in pain, I have on occasion resorted to using breathing techniques I was taught for use during labour and they work too. Probably not the best thing when you’re out shopping, but they work.

So OK, none of it is rocket science and it doesn’t stop me feeling that high-level pain, that is what my 10mg Morphine tablets are for, but the rest, the rest is livable. I like millions of others, will never be without pain. The biggest thing to changing it and to living with it is our attitude and our focus on it. If you let it rule your life, it will do exactly that. If you work on making it just another part of your life, along with taking the medication that your doctor prescribes, you can live with it.

Please read my blog from 2 years ago – 19/07/2013 – Time in nothing

I guess I am heading into a weekend where I will be in my bed rather a lot. The temperature here is rising by the second and it’s only 9:45, for me the forecast looks gloomy, blinds shut, windows open and lying on my bed wishing that it would just end. This morning I swallowed the….