Sometimes I just wish that I could feel like the old me, even if it were just for a couple of hours. Everyone sees me as being such a strong person, someone who is alway positive about life and doesn’t get pulled down by anything. Mainly they are the people who don’t really know me that well. I guess when you learned as a child to live behind a screen, to hold bravado as the strongest trait anyone can have, well you carry it on right the way through your life. Those who have read from the start, right the way through today, well they might know a little better that behind the person who writes as though the world is a wonderful place, is someone who is just as scared about every single step they take and where their life is going, just like every other single person on this planet. I used to think that there would be a point in life when all that fear would drop away and I would really have all the answers to all those things that as children we think adults understand and know, but are hiding from us for some warped reason, only to find the truth is they knew just as little as we did. Don’t get me wrong, I do have and always have had days when life was just good and the problems around it didn’t matter, not for a single second, and I still do have them, but then I remember and it all looks so different. I am as vulnerable to life’s ups and downs as everyone is and just like everyone else, if someone was to walk into this room right now, I would smile and disappear behind my screen again, simply because you can’t spend your life in a constant state of fear and those around us don’t need ours added to theirs. So today is a day when I can see all the bad things, all the things that I normally brush aside and smile at, not sweetly but in with a threat attached, it’s a day where I feel cold and in need of crawling back into bed, not to sleep, but just for that simple childhood comfort that bed brings with it.
So where did that all come from, well the first line, I just want to feel like the old me, the one who wasn’t ill all the time, the one who wasn’t in pain and didn’t spend their life trying to find something, anything that mades them feel better. I actually envy those who have relapse-remitting MS, because I do still remember the joy of being in remission when OK my body was still showing the signs that something was wrong, but at least I could still manage a normal life. To be honest, I don’t think there is anything crueler than a progressive condition as it takes your entire life and turns it into a threat. It’s a constant glimpse of your future with the knowledge that it is still just practicing for the main event and that once it has mastered everything, it will be so much worse. You can’t help looking backwards and trying to work out the exact path that each symptom has taken, trying to work out that angle you might see on a graph and then to extrapolate them off into some mad planet you can’t even imagine. There is a fact that I have noticed and that is there is never a point that you can say this can’t get worse. I have hit far too many points when I believed that I had reached the worst it could possibly ever go, just to find out it wasn’t the worst at all, there is still more it can do. Everyone has these scales in their head, scales for different sensations, for example, pain, we have a 1 to 10 and we know where on that scale the pain we are feeling is. Simple, no. The problem starts with a small fact, none of us are working on the exact same scale in the first place, they are all individual and dependent on our own life experiences. Life experiences change as time goes on, when your symptom reaches that number 10 on your scale, where do you go? All you can do is rebuild that scale, what was 10 has to move downwards as there always has to be space as we now know it can get worse, so does 10 become 9, 8 or even 7? Progression means it is going to get worse, so how bad can it get and which bit is the worst, what does our future really hold once you have gone past the worst you thought it could get and you know there is more to come?
Beside those scales that measure our symptoms, are the scales of time, how long is quick or even slow? No one can tell me how long any of the symptoms I have will take to get to their final position, will it be another year or 5 years before I can’t breath without help, will my bowels stand up to another 10 years of not working without dynamite attached, or will they give in totally and require intervention? PRMS is blind progression, blind because not even the experts can give me the slightest idea of what will happen when or even next and to live like this is really some kind of cruel joke, without any hope of laughter at the end. Is it any surprise that I hide behind screens, not just for others but for myself as not even I want to think about all of this all the time, but then there are days like this when it brakes through and my mind is filled with a million questions without one single answer. I used to get angry with the doctors for not diagnosing what was wrong with me when I first went to them in my 20’s begging them for some help, in an odd way, well I am now glad that they got it wrong as I at least had part of my life being totally blind to the truth. Years of being treated for all the wrong things actually were years when yes I was ill, but I convinced myself that I could survive as clearly I wasn’t any more ill than the next person, as if the doctors could find nothing, then maybe they were right and I was just a wimp and yes I know I have written about that before. Oddly, I heard someone else on TV the other day saying just the same thing and just like it was for me, she too was relieved to find out that she was really ill and that there were other out there who shared just what she was going through.
Without our screen, those places we can not so much hide but shield ourselves with, progressive illness wouldn’t just drive us into a deep depression, it would drive us totally mad. Yes, I do live in a fantasy world, where I tell myself that I am fine and that I can still deal with life and all it throws at me, but the only other option is one I don’t believe helps to even think about. That strength that everyone talks about, the ability to move forwards when what is ahead of us is unthinkable, could just as easily be seen as madness, as who on earth pushes onwards when what is ahead of them is a living hell? We do, the people who still remember just how special this whole business of living is, the people who have already lived through more than anyone should and know that they can still live well through more than even they can imagine.
Read my blog from 2 years ago today – 29/03/13 – They are married! > http://bit.ly/XLGbZS
A few Christmases ago I was given a gift of a good bottle of champagne, I decided to keep it for the right occasion. Yesterday at last brought that day I had been waiting for, the day to open and enjoy the contents, to toast those I love and care about and to enjoy as part of a celebration. I can’t think of a better time, than the day of my daughters….