It’s cold this morning, I decided yesterday that there was no way I was going to have the central heating on full blast any longer, it is May after all. I didn’t go as far as turning it totally off, but I did turn it down to almost off, just to see if I could bear the temperature, right now, I am not that sure that I can. I used to have a rule that come what may, the middle of April was the longest that the heating remained on. When Adam and I got married 16 years ago we were right now still on honeymoon, a honeymoon spent in Arran and the first-week camping. We returned home with suntans and never once felt cold day or night, I know that is no guarantee of how the weather is year to year, but this really is the longest cold winter I can remember for years. It’s one of those good memories that shows how totally different my life is now, as then we spent every day walking miles around the island up mountains and along the coast without feeling tired or even worrying that the odd day was spent being rained on, we just had fun. It is hard to believe that I was ever that fit once and thought nothing at all of just heading off to walk 10 or 15 miles whilst carrying a large rucksack. Adam did take the tent but still my rucksack was packed tightly with clothes, bedding, food and so on and here I am such a few years on having to buy new soup mugs as the ones we had were too heavy when full for me to carry from the kitchen to my desk in the living room and the bowls to easy to spill. I was 38 then and I was as physically fit as I had been since childhood, nothing phased me nor did I ever give a seconds thought to what I could or couldn’t do, I just did it. In 16 years I have physically aged more than double that time, but I do so understand people who in their 70’s and 80’s who say that in their minds they are still 16, as I don’t feel a second older.
I find that it is that physical degeneration that is the hardest thing to accept, pain is controllable and livable, but finding yourself so weak and so useless that even the simplest tasks are out of your ability range, isn’t just frustrating it’s wrong. I can only guess as I am never going to have anything to compare to it in the correct chronological order, but I would suspect that living with PRMS, Fibro and similar conditions is exactly like premature aging. If I were to list my physical abilities and get a specialist to read them and work out how old I am, I am reasonably sure they would put me in my 70’s, as I seem to me to be able to do about the same or less than most 70-year-olds I have known, compared to my grandmother, I am in my late 80’s. Just like older people, I find myself almost daily in my head trying to do something and starting to, just to find that although in my mind it was so easy, but when it comes to it my body just can’t cope. The other day I was angry with the duvet, it felt kind of flat and when I had tried to pull it up, all I was getting hold of was the cover as the duvet itself had slipped down in the cover, a simple thing to fix, just shake it. I lifted the end of the duvet and I went to give it a really hard shake, the sort of shake that should have seen it lift into the air and be clear of the bed, all I achieved was a mild ripple. I tried again, this time putting all my full strength behind it and again the duvet rippled and never once left the surface of the bed. I turned and sat down on the footboard and felt not just tears in my eyes, but fatigue ripple through me faster than the duvet had moved, I felt totally useless and for a few moments I sat there wondering what use I was at all. You never expect and I don’t care what anyone says, you never expect to be as useless as a child when it comes to our body strength. I know that I was an exception to the rule, but right through my 30’s I was still going out clubbing and danced, not moving from foot to foot, I mean really dancing just as those in the 20’s around me were and I out danced most of them & I never even got breathless, my fitness levels were high. I thought then that I was never going to age, I looked young for my years, I was slim with great muscle tone and I was more alive than most of the people I knew, who were all younger than me. I was totally convinced that I was going to be one of those people who in their retirement would be mountain climbing and cycling almost every day, as I thought then there was no reason to not expect it, as long as I continued to keep myself fit. It was, in fact, the flares I had been having years that made me determined to stay fit, to beat the aches and pain in the misplaced belief that fitness equalled health. Looking back now, I can see clearly when it all started to slip but I trusted my doctor when he told me I had a virus and it might take up to a year to recover totally, I didn’t, it was my last flare of my MS when it was RRMS before it turned into PRMS.
I know none of us really expect to age, it is one of those things that happened to other people, but I was doing everything I could to not let it take over my life one second before it absolutely had to. I was that sure that when Adam who is 17 years younger than me asked me to marry him, I didn’t think twice, I was his equal and we would age together. Finding myself as I am now just isn’t fair, I know life isn’t fair but when you have spent your adult years working on being young and staying that way, well it’s even more unfair. I could have spent all those years stuffing myself with food and being as lazy as the rest of the world as I would still be where I am today. It doesn’t matter how many years you have been ill, or how many years you have lived when you find yourself unable to do anything that you believe is within your ability, it hurts. When you find almost daily that 99% of what you want to do is out with your ability, it more than hurts. Spending my life sitting or lying down was never in my future, but here it is my reality, I sit here looking around me and almost everything I see, has a can’t attached even if that can’t is only “no you can’t clean that”, it is still a can’t. That is still one of the things that both hurts but makes me smile as well, I can’t do the housework, I smile because I know that to most that would be a joy, I hate that word can’t. It is another of those things that I never thought would be impossible, I saw in my mind’s eye a picture of me doing the housework in my wheelchair, that was before the fact that my wheelchair and a Victorian house don’t actually work together became clear. I always knew that I wouldn’t be able to wash walls and ceilings, but I never thought that I wouldn’t be able to just dust and clean, it has to be the simplest task, but muscle fatigue has turned it into an unfulfilled dream.
I have turned my physical uselessness into what I do online, I do admit that often my arms and hands tell me they have had enough, but I don’t listen until they scream at me, but it doesn’t matter what I do, my physical failings do leave me feeling useless, which isn’t a nice feeling at all. I used to be proud, so proud of the fact I could turn my hand to anything from the artisticness of embroidery, to DIY, to physical hard work of gardening as one of my biggest strengths, all strengths that have now gone. Adjusting your brain to accept those new limitations isn’t easy, as in my head I can still do anything and everything, as in my head there is still a little piece of me that isn’t ill, that isn’t limited by that illness and still believes that life is easy, all you have to do is work hard at everything. This is what happens when you can’t.
Read my blog from 2 years ago today – 9/05/13 – Living in flux
I started the day slightly early, I was woken early, but that wasn’t the problem, the problem was I couldn’t get back to sleep, partly due to the chorus of snores from beside me and down stairs, I think, but the real problem was……