Every day I tell myself this is it, I have done it, at last I have found the way to get through the things I have to do each morning faster, every day I find myself here just at about the same time as I do every other day. Just like every other day, I am beating myself up about it. Why is it that no matter what happens in life we are always the ones hardest on ourselves, we are the ones who actually make our own lives tougher than they should be, just because we have stupid expectations of our own ability. Even now although I haven’t worked for years, there are nights when I dream that I am still in the office and that I am trying as I always did to keep all the plates spinning, despite no one expected me to do half of that which I did daily. I have even woken in a cold sweat and suddenly awake as I have been dreaming that the phone system was down and once again I was stood there staring at the banks of rigged components that made up the switch, not knowing exactly what to do, but biting the bullet and doing the only things I could think of, in the fear that I might kill it for ever, bringing the entire company to a stand still for days. I was never trained to do my job, I learnt as I went along something that I suppose sums up my life, I was never trained to do anything, I just did it. It is so often our own expectations that drive us on to do better, but you would think that there would be a point when you would actually start to be nice to yourself and to say well does it really matter, without snapping back, of course it does.
I am still waiting for the day when I will just accept the fact that I am ill and what I can, or can’t do is limited by that simple fact. Don’t get me wrong I do accept the fact I am ill, I fully understand what my condition can and has done so far, but for some reason I still just can’t fully grasp how limited I am. Despite all the years of adjustment, all the years of having to unlearn how to keep a home, do a job, be a wife and on and on, there is still this bit inside of me that wants to scream, I am not ill, I can do anything, just watch me. Totally nuts when the same person finds it hard just to get to and back from the toilet some days. It is almost as though intellectually I have accepted and moved on, but my sole just can’t. I don’t know how else to explain it or if everyone in my position feels exactly the same, that’s why I am writing it down, just in case there is someone reading who feels just the same way, well hello, your not alone.
In some ways those are the two hardest thing about illness, all the adjusting you have to do and that constant feeling that you are the only person who is going through what you are, because you haven’t met anyone you feel comfortable enough to ask about it and all that literature that fills the web, just doesn’t have the answers you are looking for. I remember regardless how many people there were around me, giving me advise and trying to help, there are always going to be bits of being ill that you are totally alone with. I could write a million words about adjusting and I bet that every person who reads them, looking for answers would find their main one missing, we all have that one thing that bothers us more than any other at that precise minute. Trust me, they really do change all the time and today’s trauma, will be totally forgotten in a weeks time as you will have found a new one.
Adjusting to any progressive chronic illness never ends, you have just got to grips with the fact that you can’t do one thing, when something happens and you have to learn again and again, the pattern just keeps going on. Just like pain, you think you are living with pain you will never get used to, but you do, as you get used to it you for a while will find you can do more before it reaches a point where you have to stop, but then it gets worse again. The progressions never end, pain rises, disability grows and you adjust with it all, always hoping that this is the point where it will stop getting worse, but it just keeps going. Sometimes it gets all to much and you don’t want to adjust any more, you don’t want to have to find yet another way of doing something, sometimes you just want it all to stop, not because you want to stop, but just because you want a break from it all. That voice inside is shouting I can do it and I am going to, it’s well meaning, but it isn’t practical to listen to it, as all you will do is exhaust yourself and make things worse.
I have adjusted from a truly active person both mentally and physically to someone who would just like to do the housework, or cook a meal, but I can’t. I am not stupid enough to think that my illness will stop here at this point, any more than it did when I hoped that giving into the wheelchair would mean my body could rest enough for me to continue at that level for ever. My adjustments have along way still to go and I kind of get the impression that they will never end, any more than any of us actually truly ever stop learning. Some adjustment will always be easier than others and some I guess will eventually be impossible for me to do alone, but as long as I can see the good in the changes I have to make, there then has to be a point on working on them.
Please read my blog from 2 years ago today – 28/04/12 – Brain fog or custard
I’m find it hard today to hold onto a thought for too long, this often happens but it is always a strange feeling. I have spoken about MS brain fog before but I haven’t tried to describe it before other than to say you forget things, well that is a long way from the full picture. Brain fog it may surprise you to know, doesn’t just effect your brain.
When I try to sit here and work out exactly how to explain it, it gets harder to explain by the minute. My whole head is engulfed as though it doesn’t end at the skin, there is a force field surrounding it hovering three or four inches from my actual skin and it is gently put pressure on my brain, in a fashion……