Let us live

Have you ever found yourself doing something in your sleep, with absolutely no idea why you might be doing it? This is actually the second spell within a couple of years I have woken to find my body twisted at my waist, so that my head is still on the pillow and one or both of my legs are out of the bed, so far out that my feet are on the floor. Believe me when I say that this results in two things, a sore back and painful thighs, which is actually what wakes me up. I have always hated sleep when it comes to being able to remember things, I very rarely even remember my dreams, which used to lead me to believe that I just didn’t dream, but that I know is impossible. Other than the unlikely possibility that I am trying to get out of bed, I can’t think why I would put my body through such a stupid thing, I am discounting trying to get up simply because I have never sleepwalked, but I suppose that you should never say never. It’s just a little odd that I should suddenly choose to try such a thing, at a point when I can no longer usually get out of bed without difficulty, the workings of the human mind whilst asleep, is something I have no idea about at all, I just wish I could stop it as I can do without the pain or the waste of good sleep, life is tough enough with my normal fatigue and tiredness without adding it myself. Right now I feel terrible and yes I have taken my meds, this is just plain and simple lack of sleep. I guess that is what makes conditions like PRMS, just that bit harder to live with.

Life is filled with silly little things that we all spend our lives getting annoyed at, but don’t really make any difference to the average person, those silly little things, take on a whole new aspect when you are ill. Think of anything you do daily, like preparing a meal or doing dishes, it isn’t just the physical aspects that you have to think of, it is also all the opportunities along the way for you to forget, drop something, loose your balance and a million other little things that might go wrong. To start with, well you tell yourself you just have to get on with it and to start with, you do, but it doesn’t continue like that. You find the odd meal doesn’t quite taste right and when you think about it, well your realise that you have left out an ingredient, other meals get changed totally when you find you forgot to buy some of them. Then the dishes start to slip in your hands and just holding a wet crystal glass puts you into a state of pure terror, all you can think is this is the one I will drop and then I’ll have to buy a complete new set, not that daft a thought after just spending the last few minutes juggling with plates and picking up cutlery from the floor. Then the day comes when dinner is no longer an option, as it is burnt to the bottom of the pan and had to be put in the bin, the dinner, not the pan, mind you it might have been easier on occasions if they had both landed up there. Everything you do, slowly takes longer and longer as you are trying to get it right and when you fail, well it all has to be done over again. The pain isn’t just in your body but in your wallet and the time comes when you have to admit there are now things that you just can’t trust yourself to do. Eventually, even the simple safe things like changing the bed sheets are beyond you as by the time you have taken the old ones off, well you need to lie down to recover. You can manage buttons or hooks and eyes, styling your hair has had to end, as you can’t hold both brush and hair dryer over your head long enough to style anything and make-up is no longer beautiful and precise, more a quick cover-up of the worst horrors your face shows in the mirror, everyday life has become your enemy.

I honestly think that for the average healthy person, those are the things that they just can’t get their head around. I remember being pulled aside by one of the directors to have a strip torn off me for my appearance, I was expected to be in a meeting on her behalf that afternoon, yet I had arrived for work wearing none standard business dress and my hair wasn’t perfectly done. When I said that I couldn’t help it and that I had done what I could that morning, she simply looked at me as though I was an idiot, she quite simply couldn’t comprehend that I couldn’t manage suit or shirt buttons that morning or the work required to do my hair any better than I had. It wasn’t the first, nor the last time she spoke her mind about things that I simply couldn’t change and despite the fact she and the entire company knew what was wrong with me, she simply wasn’t prepared to make even the slightest allowance for how things were. When you have spent your entire life doing things without a seconds thought, like climbing ladders and hanging off lighting rigs, something you have done over and over again, to find you can’t climb a flight of stairs, without stopping and waiting for the pain to pass, well life is hard and those who knew you as you were, can’t get their heads around it either.

I once had not just a body that was strong, but one that could dance and outperform most I knew, physically I was very fit, when I DJ’ed, well I could carry two cases each with 4 stone of records in and run with them, whilst I watched with amusement as the bouncers lifted and dropped just one in disbelief. I had an astute and fast business brain, I could write computer programs, dye, cut and style my own hair, sell ice to Eskimo’s and had a quick and cutting sense of humour. I don’t understand what happened to that person, so how anyone else that knew me could, well I honestly don’t know. Different parts of me worked on different days, to an extent that is still true, one day I couldn’t manage a button to save my life and the next I could button any you showed me, that is what it is like for almost all of us with MS or PRMS and I understand fully why outsiders just can’t get their heads around it. Either they treat us as though we are like everyone else whilst watching us with disbelief when we fail the simplest task, then treat us like idiots or they treat us like idiots from the second they hear what is wrong. Chronic illness doesn’t mean that life is over the second you are ill, but it means that life has to change and it changes daily, not just because it gets worse with time, but because every day has different problems, problems that didn’t exist the day before and probably won’t exist tomorrow either.

No two days are the same, far less any two weeks or months and I have seen many healthy people get frustrated and angry with me as they can’t understand why we I am not getting something right, well imagine what it is like be to trapped inside a body that specialises in making life far more difficult than it has to be. Once I was a person who could handle whatever life threw at me as well as everyday activities with ease, imagine for a second, just what it is like to be me, housebound and reliant on my husband to do everything for me apart from the most basic things. I no longer have styled hair, just hair, I no longer make or wear fancy clothes, just pyjamas and dressing gowns, I can’t work, I can’t clean my home or cook a meal, I can’t do even one percent of what I used to in an hour in a whole day. Yet I am happy, but I know there are millions of people out there struggling through what I have lived through, all they ask is a little understanding, a little time and the chance to carry on living their lives while they can, please help them to, by simply letting them.


Please read my blog from 2 years ago today – 02/02/13 – Pain, its controls and its effects 

Jake arrived a little late yesterday which really isn’t like him, but to be honest it meant that I had time to get more down before he arrived. He stayed for about an hour and I gave him as much advice as I could about sorting out his CV, which I have to say was really bad, but what he needed more……..