Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse remitting MS and of no use to me at all. Sometimes it nice being different from everyone else but I really drew the short straw when my MS was diagnosed as progressive relapsing MS, 5% that is all of us there is, just 5% of all people with MS have this form and I have to date only met 2 online. It was one of them thought that said something that made me smile and accept it a little more, all they said was that “We are the lucky ones as we don’t have to take all those horrid drugs that other MS suffers do”. It is true about a lot of things in life and health is no different, if you can’t see the funny side, well you would be wallow in depression. I know that I get frustrated by my health, but I also laugh at myself a lot, in fact, I have learned to laugh when many might cry. I have a habit now of first saying to myself what would an outsider think if they saw me right now, stupid things like trying to commando crawl in pyjamas and dressing gown, it doesn’t work as everything slips, get tied around you and leaves you little further along the trail you had planned and I know without a doubt must have looked ridiculously funny. Or when on days when all muscle control is gone and I can’t help passing wind with every step I take, there isn’t a kid on the planet that wouldn’t laugh at that and when alone I try to remember that and not get my self-wound up about what I can’t do anything about. They say laughter is a great medicine, I say it is the protector of sanity.
I suppose we are all guilty of taking ourselves too seriously, of being too concerned about what others think of us and unfortunately, that doesn’t change just because your body is now out of your control. It is hard at times to remember that it isn’t our fault, or that there really isn’t anything in the world that can be done about the millions of things that happen again and again, but you have to try, for a perfectionist, well it is even harder. Strangely it isn’t the falling over, the stammering, the strange body twitches or even the problems cause by my bladder or bowels that embrace me the most. They are the obvious effects that go hand in hand with MS and are all easy to accept, as they are all things that are clearly out of my control, just as they are out of anyone’s control who has this illness. They are the easy things to laugh at, to put in their place as being part of my life that I can’t control, but there is one thing that I can’t laugh off, one thing that I feel ashamed of and embarrassed by and although I know logically it isn’t my fault, I still would do anything to change.
Even after all the things Adam has seen, has had to do for me, or even he has read here, or we have talked about, I still try to be as close to the person he married as I possibly can be. I know, he knows and world knows that I’m not, I don’t wear make-up, do my hair or even get dressed nicely any longer, but those things I have found easy to pass over and put away in a box, as they are the small things, he has always saw me as I am now at weekends or in the evening, so that one I can cope with. Yet I can’t deal at all with the fact that I have gained weight, I keep myself always covered as much as I can, I sit in ways that hide some of it and drape my dressing gown over the rest. It’s not my fault I have gained weight, it is just part of being ill and not being able to move, but I beat myself up about it daily. To be honest it isn’t helped by people constantly going on and on about just how much damage being overweight does on TV. It sometimes feels as though every day at some point I am being shamed for something that is the last thing I want to be, fat. This is the first time in 30 years that I have been over 10 stone, which for my height was spot on the weight I should be, in fact, I was often below it. I now weigh 13st 8lbs, I dread standing on the scales, but I keep doing it, in the hope that one day it will start going down instead of just up and I truly dread the future. For nearly 6 years I have managed to keep my body hidden from Adam, I couldn’t bare him seeing me naked, as I can’t even bare seeing myself dressed. Short of stopping eating at all, I can’t see how to win this battle, I have cut and changed my food over and over again, but when you can’t do anything physical, not even walk, what are you supposed to do?
Years ago after I had my first son, my weight was worse than it is now and I lost it all by myself, I simply started to count calories and slowly I lost the weight, never to put it back on again. Yes I am human, I had the odd blip were a few pounds when on, but I lost them always with ease and as long as I kept track of my eating, I was fine. I couldn’t understand why anyone couldn’t lose weight if they really wanted to, calorie counting now is so easy compared to back at the end of the 70’s, then everything had to be weighed, worked out and written down, but it was easy enough and it cost me only the price of a book that told you the calorie value of almost everything. It also taught me for life, as I counted in my head roughly every day what I ate from then on, no weighing just estimates but it was enough, so to find that I now eat around 1500 cals a day and the weight goes on, well it’s depressing, to say the least.
I never thought that once I knew my future that one of the things that would be high on my list of things that make my life hell, would be something so simple and every day as weight. Life really is a funny thing to try and live.
Please read my blog from 2 years ago today – 29/05/12 – The medical quandary
Medication is almost as difficult at times to handle as the illness is so I agree totally with the title to the above picture. Although I constantly say you have to listen to your body I do when it comes to medication find myself waiting, just as it took me several weeks of increased pain to call my GP yesterday and discuss again the options. The only med open to me now that can be increased is the Oxycontin, I have been on it for several years now and I am taking 30mg……