There are always down sides to every up, today because I am going to the hospital on Monday, I have to once again make a mess and dye my hair. It’s one of those things I only seem now to do if I am going somewhere, or I know well in advance that someone is going to be here. There seems to be a growing list of things you just stop doing once your life has stepped out of the work world and in to a housebound one, it isn’t anything to do with pride in appearance, I wish my hair was perfect all the time, but the more difficult it becomes, the more it becomes a must do, rather than a I want to do job. I have always seen that symptom of depression, “lack of care in personal appearance” and laughed at it. It is another one of those things that needs far more quantifying as there are a lot of other reason why you stop spending time daily doing the impossible. I may now have the time, but I have lost the ability, when your body takes every opportunity to cause you pain, you quickly learn that sitting with your arms above your head, combing, crimping, curling or any of the hairdo requirements, well you start to see it in a very different way. I see my personal appearance as an embarrassment, one that I can do nothing about. My energy is now precious, avoiding extra pain is essential and even spending money on things that I don’t really need to, have all taken over. Adam has offered a million times to help me with all of it, but I don’t think he would really want to get up half an hour early, every day just to help dress me, apply make up and sort out my hair, only to have to come home again to remove it all. Pointless is the word that comes to my mind far ahead of any other, which for a person who wouldn’t leave the house to buy a pint of milk without everything being correct from eyelashes to outfit, is a huge step.
Chronic illness does really change you as a person, those things that seemed so important just a few years ago, have somehow slipped into new positions on the hierarchy list of must do, must happen and can’t live without. If you had met the 30 year old me, you would have met a person so different that even I sometime wonder if we really are the same person. I can’t think of one area of my life that actually is the same, I know we all change as we age but this is far far beyond that. It is actually one of the most amazing thing that has happened in the last few years and for most of it, it has actually been relatively pain free. For my entire life pre housebound, I was a total perfectionist, everything had to be just so and if I saw the tiniest speck of what ever where it shouldn’t have been, be that on me, in my home or where I worked, I fixed it there and then, no excuses it was done. My appearance was unlike anyone else I knew, or even saw anywhere I went, as I spent a great deal of time designing me as a person, down to silly things like spending 5 or 6 hours a week just doing my nails. My nails now don’t exist now, cut as short as possible as long nails when you have poor dexterity, well it just doesn’t work. I am at this second sitting at a desk with piles of papers all over it, papers that just need sorting through and in the majority of cases just need shredding, but it’s just to much to do without planning and making time and energy to carry it all out. Everything on the desk needs cleaning, the desk itself needs cleaning right to the point that the polish needs stripping with white spirit, then re-polished with beeswax. I can’t see anything, in any direction I look, in every room of our home, that wouldn’t have sent me in motion to strip, clean, redecorate, fix, tweak or change, yet now I somehow I just sit and look. I can see everything that is wrong, everywhere, but somehow, somehow I can now live with it, without going into some kind of fit.
I don’t remember any of it changing, I do remember the odd day where I stood in the middle of a room, turning in circles with tears in my eyes and shaking in despair as I could do nothing about what I saw, including in the numerous mirrors. But that was so short lived that it’s almost a mark in the column, not a feature. For a perfectionist who happily would take a comb and sit on the floor combing out precisely the fringe on a rug, until it was picture perfect, to be able to accept nothing will ever be that way again, it a journey of several million miles, but it happened almost without my knowing and without the anguish I would have expected. I have a feeling that somehow the process that go on in my mind have somehow been muted, almost as though my mind was out to protect itself from the trauma that it was faced with. Somehow it changed it’s reaction, or blinkered me from flying into action and a rage that would have served no purpose. I can’t explain it as I honestly don’t fully understand it, it may be because of the damage done by my lesions, maybe one of them clipped the perfectionist part and deactivated it, but I don’t really believe that. All I do know is I am so different and I am actually still as happy without my neurotic reactions to the normal muddle of life I have seen everywhere, apart from my home in the past.
Yesterday I spent again the afternoon and the evening struggling with the pain in my chest. Part of it was the old MS hug, those intercostal muscles decided it was their turn to stop me from breathing, I actually went from lunchtime, through my nap and right through to bedtime with what felt like a Victorian corset, unfortunately with out the beautiful lacing up the back, as I would have released it. On top of that I unfortunately was also getting the more painful and more difficult to deal with spasms in my diaphragm. Having learned a few months ago how to breath using the upper section of your lungs only, as long as the diaphragm spasms are mild I can now cope with them. But when the occasional one goes for it big time and causes that feeling of everything being shoved into the upper section of my ribcage, it is then there is really little I can do. I have no choice but to try and let the pain pass and to take the tiniest amounts of air into my lungs when I can. It is amazing how quickly you learn how to deal with all these things, you just have to stay calm and try to let your body return to normal. The whole evening though was spoiled just a little for me, as each pain would stop me and make me again work on finding comfort again before joining again with the conversation, which strangely last night seemed to keep going without the long silences we normally find appearing when the TV is on. It also meant that I found it easier to manage all the things my body was doing, Adam paid no attention to them, with the result that it felt as though those hours were wonderfully normal, not destroy by me again.