Sometimes I simply hate my memory, I had a perfect start for this post thought out last night, then I spotted a comment I needed to answer and the whole thing has vanished. I know that most people who write make notes when ideas come to them, but for me that would never work, if I were to sit up in bed and write something down, I would never get to sleep, the real point of being there. I guess that just means that I have to live with it, but I can’t help wondering just how many wonderful posts since I started this project have been lost for ever. There have been and always will be days when I sit here ready to write and my brain just lets me down, I guess that means they will increase not decrease, but one thing I have learned is if I start to write, something always will appear and inspiration will flow. One of the odd things that writing has taught me is just how different people reading it, will find different thing within, often not what I wrote at all, probably because we always reflect our own lives onto everything.
I had a tweet yesterday from someone who clearly had read a tweet and followed the link coming straight onto a post, from the last couple of days, a pitfall for anyone coming new to my blog as the past is missing to them, but they made me think about a post from a long time ago in which I listed all my condition’s at that point in time, I made a list of 12 separately diagnosed conditions, which clearly don’t include my emphysema and gallstones, the most resent additions. When I made the list I did so more as an exercise, just to see what was really going on inside me, as I had recently become aware of others like me with more than just a couple and I wanted to see just what was there. I know all to well that I am not alone with such a list, many many people have multiple health issues and many with more than I have, but that was what I found myself thinking about, just how many I might have by the time I die, other than the one I die from and bizarrely what the longest list someone has ever had and still been alive. Let me say right now before some fickle finger of fate, decides to see that as an invitation, I don’t want that world record, in fact I don’t want even one more thank you, I have enough. It all of course depends on what you consider a medical condition and not worth mentioning, for example I didn’t include my tinnitus, it is extremely annoying at times, but for me isn’t bad enough to drive me mad as it does some people. These days thanks to the inventing of a group all term of COPD, I now take my asthma, chronic bronchitis and emphysema and group them under those 4 letters, but they are different conditions. The thing about all these different conditions, as it is all relevant to the individual, I personally as regular readers know only really talk about my PRMS and COPD as to me they are the conditions that effect me the most, the rest are there and they make themselves know at times, but I mainly dismiss them these days.
I have never despite having had MS for 30 years now and the rest appearing along route, not been the type of person who let’s any of it get to me, I still find it really hard to believe just how ill I am and I still get stupid ideas about somehow managing to work and get back to the life I had, you never stop dreaming about that. I always thought that I would be the person who worked to my dying day, not that I though I would die young, I just never thought that I would ever retire, I was going to work forever, being carried away from my desk to a hearse. For me it doesn’t matter how bad things look even when they are there in front of me in black and white, my personal list doesn’t matter, what matters is enjoying life and that is something I find incredibly easy as long as the pain stays at it well controlled level. I think if we all sat thinking about nothing other than where our next breath was to come from, well we would all stop living very quickly. I know it isn’t easy for those who don’t have something like PRMS to understand, but in the early stages life isn’t that much different, yes there are spasms and a constant back ground pain to everything you do, but I lived through it without medication or help from anyone. Once they worked out 20 years on what was wrong and what was happening they slowly got the medication right, apart from a 4 year spell when it was hellish, but even then life was still manageable. Yes there is horrendous fatigue, exhaustion and pain, frequently all together and yes these days I am rarely without pain from my diaphragm, I feel sick and find food a problem, but there are windows in everyday were life is still great and they are the hours or minutes I hold onto. To some people I know that wouldn’t be enough for them, but I focus on those good spells, I can deal with the pain, I have no choice, I can deal with the body that doesn’t do half the things I want it to, well not even a quarter, but whose counting, it’s my body and I have to live with it, not despite it.
Daily I pour out here what is happening to me, the good, the bad and the funny when they occur, I also pour out the things I am struggling with, struggling to settle in my mind, like the fact there is less and less of it to settle anything into. I write about my fears, disappointments and my future, I pour out here what it is to be human, as strangely enough I do still have that on my list of things to do as well. This is to me the place where rather publicly I open up my brain to examination, as Adam once said this is my personal psychiatrist as if I bottled all this up, well he’s quite right I wouldn’t be as happy as I am and happiness is essential. If you are going to survive chronic illness you are going to have to go through daily such a complex set of feelings, not just the emotional sort, that you have to find a survival plan that works for you. I know that I am so lucky to have Adam, but he is normally with me for just a few hours a day, that leaves a lot of time for me to spend alone, a lot of thought and a lot of emotions, most land up here and by the time we are together again, well we can then enjoy our time together without me feeling sorry for myself and him having to listen to the mess I call my brain.
All of us have to make a choice when our bodies start falling apart, I made the choice to keep going, I might not be able to work to the end of my life, but I can live to it.
Please read my blog from 2 years ago today – 15/11/12 – UK Roulette
I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.
Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I……