Now or Later

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all to easily adjust to our situation and take it from there. It really is a problem that I didn’t think much about until recently, if we didn’t adjust with such ease, would we maybe fight just that bit harder to maintain our full health. I am not saying that it is mine or anyone else fault that they have through illness landed up where they are today, but I just can’t help wondering that if I had put in just that bit more effort into walking when things were getting difficult would I have managed to walk for just that bit longer. Questions that I know there is no way of answering.

Being able to adjust is physiologically clearly a great thing, otherwise I would be totally engulfed in depression and I probably wouldn’t be writing this now. I don’t think that I exactly gave in at any point and just accepted what my body was doing, but I did give into the nagging from the medical profession and accepted my wheelchair. I know they were just trying to offer the help my body needed but it will always be that niggle in the back of my mind. I suppose that I have good reason to feel that way, as I had no diagnosis for nearly 20yrs and through out that time I managed on my own. I know they worked out what was wrong because my illness changed from relapse remission to progressive, but it also opened the door to being allowed to be ill, before that I just had to keep going no sick leave, no feeling sorry for myself, just pushing on through life. I am grateful for all the help I have had, but I think you can see what I am saying, knowing what is wrong makes you feel sane, but it makes room for so many other things as well.

I’m no doctor or a physiologist but living through so many changes and so many peaks and troughs of health, forces me to try and understand why or how I accept or react to what is happening. I have found that I react amazingly well to the major thing, but get easily frustrated and even at times distressed by the smaller things. I know that sounds like the wrong way round but that me I guess. The morning I woke up to find my left arm no longer worked I managed to get dressed and to go to work, I don’t remember even the slightest tear or anything other than a matter of fact attitude, and being annoyed as I burnt a tuft of hair off with my hair dryer, that distressed me more than loosing the use of an arm did. Back to front, no distress when I have knocked myself out, gouged cuts in my arms or any of the major things. I suppose they are all things that are out of my control so why get upset about it, it won’t help me or anyone else either. Maybe that is why I cope better than some others, when things go wrong I put my energy into how to work round it and with it, rather than what I can’t do any longer. I focus on life being as normal as possible and that is the normal I don’t like, but I use it as a gauge, it allows me to try and bring my life as much as possible in line with the rest of the world. I know they will never be equal again, and forcing myself now is to late, the damage is done, I just have to live to the fullest that I am now capable of and remember to be happy that I can do it at all, as one day, well I won’t be. How I cope when that happens well I guess we will see.

Fighting Change

Well here it is day one and already have an extra hour freed up as I usually wouldn’t even be at this point by now, 10:30 and starting my post is really early. Strange thing is though I am find it hard to push myself into not fiddling with things as I have this inbuilt part of me saying it’s OK no need to be in a hurry you have loads of time to spare. I suppose though once I have the new routine settled in my head that will vanish.

I had forgotten that this weekend and today are the September weekend, a local holiday which means my work has an accompanying sound in Adam snoring on the settee, that isn’t holding me up in anyway just putting me off as I keep thinking I have to wake him it’s Monday and he shouldn’t be here. His working week is one of the few things that keeps me on track with what day of the week it is, so he is adding to the feeling that things are just wrong today and not what I am used to. It amazes me just how much we are creatures of habit and how trying to change those habits is really hard. I suspect this is why most people when they have a holiday leave their homes and go somewhere else, stay at home and you continue as before, go somewhere new and you have no normal to base anything on so different is all that is possible. I used to always think I didn’t like holidays due just to the boredom factor, but I think also there is a big splash of MS being happiest when it know where it is and what it is doing at each minute of the day. Holidays mean being scarred a lot of the time, as it means not knowing when or where anything is or will happen.

I have noticed over the years that anyone who has any type of brain damage all seem to need routine and order. My Aunt worked with children with Downs Syndrome and I went to the school to help out on every Thursday afternoon, I had had Glandular Fever and wasn’t allowed to do any Sport for six months this meant I couldn’t take part in the weekly hockey, tennis and the rest of the things I hated, so arranged instead of just sitting their watching, to being allowed to help out in my Aunts school instead. I learned a lot in those afternoons and loved the time I was there as I had had like most, no contact with people like them, I don’t think there was one that I didn’t fall in love with and I remember their faces to this day. I also remember seeing in them a more extreme version of many things I see in myself now, add on my experience in the mental hospital I was in for a couple of months and what I have seen on TV and all of that knowledge tells me that it is a universal effect of brain damage. We can’t deal with anything that isn’t exactly the same as it always is. I don’t know what it is or why but there seems to be that universal fact, routine, normality, order are all required to maintain that feeling of safety. I suppose a Neurologist or a psychologist would be able to answer why we need it and why our minds freakout when it is changed, the more the brain is damaged the more it becomes important.

So what I am saying is I am once again in the two brain situation, part of me is fighting like made to keep normality, the past, the other half is pushing to make the change, it is also really odd being able to feel like an observer aware of all of it, all. Sometimes I think it would be easier on me if I couldn’t sit here and observe what is happening, just letting it happen and it is a strong temptation believe me. I have now managed to sit wondering for 40 mins which isn’t constructive activity no more time to fritter, this is and will be the start of the new even if I still want to drift back into yesterday.