So here I am, sat with a picture of me in front of me, a picture I don’t like because of what I see, I don’t like. What I see is a woman who has aged in the past 5yrs faster than in any other 5yr period in my life. They say that MS is a hidden illness, one that others can’t see and I always used to agreed with that statement, after all I have lived with it unknowingly from the age of 21, right through to 39, yes I had had periods of being ill, but I couldn’t even see it so no one else could see it either. The past 13yrs of my life I have lived with the progressive stage, now it is no longer invisible, anyone who looks at me, can see there is something wrong, something very wrong. 30yrs is a long time and we all change in that period of time, we all age and we all grow up, so what is it that I see in this picture that I don’t like, it isn’t just the new lines and the normal signs of aging, it isn’t the darkening round my eyes or the first signs of jowls, I can live with all of that, that is just life. It isn’t my eyes as they still have that spark in them that says I am here, I am alive, that has never changed.
Strangely I can now see my MS, I can now see that something is wrong. I have seen this before, I have seen it on every trip I have ever made to hospital, in every waiting room, in every ward. That look that is laird over others faces, not just part of them, but there as a though more than them and in control. Even in the best of the pictures I took the other day for Facebook it is there, words to describe it are difficult, but it is something that says this person is ill, this person knows pain, this person understands illness and what it is doing to them, it is etched into every pore of their skin and I now see it in mine.
I bet most of you reading this are now thinking I have totally lost it or that my meds have taken me into La La land, that’s why I waited a week to write this, I thought I was in La La land to, but I still see it. A pale mask of illness that tells the world I am no longer fit and well, no longer filled with energy and no longer able to be part of the world. I wish I was in La La land, you don’t know how much I wish I was, because the truth hurts and I have enough pain to deal with. If one of you dare to try and tell me I look fine I will scream, as that isn’t what this is about, I know I still look OK in the general simple way, but if you understand what I am trying to say them please let me know I’m not bonkers.