Just occasionally what I write here isn’t driven by me but by something that has been said on Twitter in response a tweet I have sent out, well that is where I am at least starting today. For those of you who don’t follow me on twitter, I send out two sorts of tweet with regard to my blog every day, the first is simply a link into whatever my post is written about and the second is more a statement that says something about the reality of life with chronic illness and are usually upbeat and positive, occasionally someone, normally someone who isn’t ill, will read it incorrectly but that is par for the course. I knew yesterday’s was a little clumsy but stupidly I sent it out as it was rather than giving it a second polish, it read “OK #Chronicillness can mean we are dying – But that doesn’t mean we’re going to stop living”. There is a fact about Twitter that only less than 1% of people who read something actually send a response, so to find that on it’s first post I had 3 people coming back at me, meant there were at least another 298 who also read it wrongly, which confirmed what I had expected. Those who personally don’t have a chronic illness, or one that carries a death sentence, just don’t understand where that sentence comes from.

There seems to be in this world a total fear of facing the future just as it is, not all but many chronic illnesses do carry a death sentence with them and ignoring that fact doesn’t change it, nor does it mean that we think about it every second of every day and let it get us down. Millions and millions around the world at this very second are living with what I keep calling the “ticking clock”, yet their friends and their families pretend it’s just not happening. Even I the one with the “ticking clock” don’t call it death, not because I have an issue with it, but because others do, if I kept calling it my life expectancy or the date I will die, or any of the other things that are nothing but the truth, I would be seen as either depressed or fixated with doom and gloom, which couldn’t be further from the truth. Hence, my post on Twitter yesterday and the expected response I actually got. Yes, everyone is dying, we start doing that before we are even born, but there is a million miles of a difference between that, natural life expectancy and knowing that and knowing you are the one that is not just listening to it, but feeling every tick of that clock. One Tweet out of 217,558 tweets I have sent that has mentioned death and suddenly the lets jolly her along attitude.

When I had my PRMS explained to me and what my possible future was, it was and still is a possible future as no one can actually give me the facts or prognosis, because it’s not known. I know that it is not a pretty picture and that my next flare or progression could stop me breathing or even stop my heart, as that is what PRMS does, it shuts things down, some bit by bit, others suddenly. Strangely that was harder to accept than when I was then diagnosed with COPD and I was told I might have 10 years to live, that one I found much easier to accept and to process into “normality”. What made it all the harder, was the fact that no one would talk to me about it, they just wanted to jolly me, tell me not to worry about it as there would be years of normal life before then. What none get is, I am not worried about it and doubt very much are most of those millions feeling that tick are either, it is our future, our normality, but no one wants to share that, they just want to shut us up and tell us it will be all right. Don’t get me wrong, we don’t want to talk about it every day and in every conversations we have, but it would be nice to not have to bite our tongues when it feels like a natural thing to mention at that moment in time. Somewhere between the Victorian era where death wasn’t just talked about but was in a way celebrated, as mourning is a celebration and respect for the life gone and today where we mention it almost like a dirty word, we have built a monster. No one would ever think of shutting someone up if they were talking about their future, even if what they were saying sounded like total lunacy, but talk about what is far from lunacy, that is a fact and all conversation stops. It isn’t the dying who find the subject of their death difficult, it is those they will leave behind, so we the dying land up stupidly carry not just what is happening to us, but the feelings and expected pain of those around us, talking could break both those things, yet silence and pain is all that is allowed not talking, doesn’t stop either side from thinking and feeling.

I have possibly around 8 years of life still ahead of me, losing Adam will be the most painful part of my future, but between now and whenever it happens, there are a million things that I want to talk about, share and have both of us part of. It isn’t a long goodbye, it’s time to make the most of everything from the knowledge he is still missing about our home and what is in it, to the everyday life skills he is still learning to get to grasp with, like writing a shopping list. There are all the practical things that between now and then that have to be sorted out, but because of my limitations, he will have to do most of for me, all of extremely hard when death is a taboo subject in this mad world. Imagine the reaction if he said at work that he was helping me write my will and arrange in advance my funeral, it wouldn’t be helpful that is for sure, we should be able to talk about it all that way, in passing, as part of everyday life for everyone and not always surrounded by pain and or jollying along chatter.

Please read my blog from 2 years ago today – 19/01/13 – Facing painful facts 

Being exhausted is a state of the now ‘normal’, one that you can’t escape or find a way to cure, it just is. There are so many things in my and all others with progressive illnesses lives that become so much part of our lives that we don’t really think about them any longer. Just as you expect to…..