I just reread the post from two years ago today, the link as always is at the bottom of this post, what struck me was that it is a post that has nothing to do with when it was written, but everything to do with just living with illness at any stage. Keggy, who often leaves comments on my post has said several times just how it surprises her that I can write every day for over 2 years without just rehashing old posts, well the secret is easy to understand from my side at least. My illness is progressive, that means I never really have anything now that is identical to how I was just 2 years ago and I usually stick to writing about the now, with the addition of memories from all over the place. That is why when I read that post today, I was surprised at just how tightly I had held it to a core idea, hence the fact that it was relevant then just as it is today. I have considered many times of writing a book, putting some of what is here along with much tighter and clearer explanations of every symptom I have ever had and how they made me feel both physically and mentally, the book I was looking for but never found. Every time I sit and think about it, I hit the same problems, I don’t know what to write, or where to even start. Where is the beginning, when I was born, when I had my first symptoms, or when I was diagnosed? Each would be totally valid and each would result for the reader at least, as three very different stories, all with the same core but each would be surrounded by a different view point.
I never know when I wake up in the morning what my day will hold, something all of us could say as it’s true to all our lives. We know what the core of our day will be, but what goes on around getting the kids to school, going to work or just doing the shopping, or for me sitting here online, is the unknown for all of us. For me that all changed so many years ago that I can’t put my finger on the date and say there, that was when I first didn’t know what would happen next. Every day I wake, just like everyone else, but my unknown, my problems start right there, will I be able to reach the alarm clock, be able to feel the correct button on top and press it firmly enough to stop it going off again in ten minutes. Clock dealt with, then I have to get up, get out of bed since I start sleeping with the bed always raised at the head end, I find the getting up right that bit easier, but even once sat on the edge of the bed, I still haven’t managed to get up. Do I have the strength, the flexibility to lift my feet from the floor and put on my pyjama trousers and socks? Can I get my arms and head through the correct holes in my pyjama top? Are they all correct or am I once more going to find in a couple of hours that they are all actually inside-out. Will my arm and leg muscles have the strength to stand and can I make them take me to the bedroom door? Everything from the second I open my eyes is an unknown. Some might think that how I was yesterday might be a clue as to how I would be today, but it just doesn’t work that way, no two days are the same, well at least not in succession. There are no clues, no pointers, it just the way it is at that moment and how it is now, tells me nothing about an hour from now in any way or form.
I can write about different things every day as every day I am living a different life. I might be the same person inside, but this body I live in is as alien to me as it would be if I changed it for a different one overnight which one also has MS. Of course, some things are the same, the gaps in memory, the inability to think clearly, the pain and the spasms, but how bad they are constantly changes, where they are, constantly moves and I have to re-adapt not just monthly, or weekly, but usually daily. Life with MS is a constantly changing and totally unknown, unmeasurable and unforgiving mystery, I never get time to be bored, at least that might be seen as a positive. Things come and go, occasionally hanging around for a few days, the reason I sort of note things in my daily blog, but something turn up and decide to stay for longer, even a few permanently, although not mentioned for a while, my diaphragm is still locked in spasm, still more painful when I lie down than when I am sitting. There are those core symptoms that I live with daily, but even they change in the severity, worse one day, better another, but always around. Just like this exhaustion, over a week now of feeling closer to zombie than living, yesterday it seemed better, but this morning it is back full strength, there is no escape and I am getting to the point of adding it to my list of permanent problems, I just don’t want to do so in haste.
Life for me is the oddest thing, it something I still find pleasure in despite the constant pain and desire to lie down and sleep forever, I am still inside happy, with so many things still to do, so much more to achieve and so much more I want to learn. My life clock is ticking faster than most and that fact alone means I can’t give in yet, as I have to cram in all that I would otherwise have stolen from me. I can only guess, but based on the longevity of my family, I should have made it to be in my late 80’s, I apparently I will be lucky to see 60, so there are 20 years plus to be made up for before I even look any further. I don’t question any longer how I will feel today or tomorrow, how I feel only matters if it gets in my way, I can live with pain, I can live with my lack of mobility, I can even live with a brain that doesn’t work properly, I can live isolated from the world, never leaving my home again, compared to what I can still do, they simply don’t matter. I still have so much living to do.
Please read my blog from 2 years ago today – 17/06/12 – Expectations of free thought
There are so many things in life that we all make plans to achieve or attain, things that are often unspoken but are expected will happen, we find partners and our own homes, we work and earn money to afford our chosen lifestyle, yet none are constant topics of conversation we are all aware of their existence. Within these expectations, there are universal ones, ones that are there……