All I could feel and hear was my pulse, it was thumping as though I had just run a mile, but I was lying in my bed trying to sleep. My head was on leaning slightly to my right and the entire right hand side of my head was pulsing loudly, in perfect time to the entire left rib cage. It wasn’t just the noise that was annoying me, but I could actually feel it through out the right side of my scull, I didn’t do it, but it was so strong that I was sure if I had lain my hand on my chest, it would have moved with it. My head was wonderfully comfortable where it was, but the noise was driving me mad as I was there to go to sleep and this had already stopped me for the last ten minutes or so. Rolling it to the other side ended it, but unfortunately it had no effect on my chest. I didn’t see it as anything to worry about in any way, as it’s far from the first time I have been able to hear my heart thumping like that, acceptable after a workout, something which lying in bed, clearly isn’t. It is one of a million silly things that our bodies do, that I just wish I knew why? Why do we hear our pulse so clearly thumping like that at times for no logical reason? We probably all have a million more questions just like that, it’s nuts really that our own bodies are so confusing, you would think that something you have lived with for so long would at some point become clear and understandable, I guess they never do. I lay there for a while longer listening to my heart in a very different way, now that my brain wasn’t pulsing with it, there was a note of comfort that slowly took me into sleep.
This morning it is once more silent and not driving me insane, that job has once more been allocated to my hands and my face, still demanding that I scratch away at them. Symptoms like those often do vanish over night and as long as you don’t look for them, they often remain quiet for a very long time. Last night I found that I had actually been scratching so much at my left index finger, that I had turned the skin red raw, all I could do was add layers of cream in the hope to calm it a little at least. Itching like this is something I do have to keep an eye on and try not to scratch too much, as I do actually have eczema, scratch too much and I have in the past set it off, just to make things worse for myself. Other than my main three conditions, touch wood, the rest of my gang of conditions have been reasonably quiet for the last few months. That actually is one of the other main questions I would like answered, why do conditions travel in gangs, get one and others always seem to join in, especially autoimmune ones, they just can’t survive without their pals. Not that I would recommend dying to anyone, but knowing that my life is now limited and that I won’t be here past my early 60’s is in a strange way a comfort, as I at least won’t have to deal with all the conditions of old age on top of all I already live with.
I have in the past wondered what would happen to me once I was past retirement age and the normal frailties of age started to attack me. The last thing OAP’s need is to fall, something all of us with MS and Fibro do rather well, so far I haven’t broken any bones, but I did see a future me in plaster, more than not. In many ways an outsiders look at me now, would persevere me as aged before my time, simply because how I move and so on, adding in normal ageing I find it hard to imagine how a future me could survive any other way than bed bound, that is unless the MS took me there before. Ageing is something none of us really want to think about to much, but it is a fact that we can avoid. It is highly possible that many other conditions might not be picked up on or diagnosed as my MS could and would mask them, Alzheimers and Parkinsons just as examples, the state of my brain right now produces many of the same symptoms. There are already treatments for both conditions that work best if they are found early, no one would notice even if they were already there working away. It is a fact and one that really those of us already living with chronic conditions, is that with age all those conditions will get worse. How you plan for that, or prepare for it will be personal but it will also need thought, thought that is probably best started now. On top of that is the possibility of other future conditions that go with ageing, having already fought for the diagnosis we have, it is going to be harder to convince doctors that what is wrong with us isn’t just an extension of that diagnosis. Documenting and explaining that you think you have something new that can be treated, is going to be just as hard.
I’m now 53, with a body that thanks to my health is probably closer to someone who is 73, in fact my grandfather was fitter than me at that age than I am now, I wish I hadn’t thought of that, oh well I’ll settle for 75, I’m just glad I don’t have the wrinkles. My MS still has progressing to do, that is uncontrollable, I also know that thanks to the weight I have gained and the medication I am on, doctors do not want to operate on me for anything that isn’t threatening my life immediately. They wouldn’t even give me a sedative when I had my endoscopy done last year as they felt it was too dangerous, and my gallstones are still sitting inside me as they don’t want to take them out. So what chance a hip replacement, probably none, just more painkillers, growing old is probably in many ways eventually going to be a bigger problem than just being ill.
As bleak as much of that sounds, I don’t really see why it should be, just like living with everything else it is more a case of setting out clearly how you want to live, then making the most of it. Not thinking about it, not preparing and not deciding how you want to deal with it all, would be a huge mistake, so don’t bury your head, it has to be faced, there is just one guarantee for the rest of your life, you will get older.