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……..

Snowmen and specters

It’s cold, a statement that after watching the news I guess almost the entire population of the UK will agree with. As is normal, Glasgow so far doesn’t seem to have had a single flake, something that from my first winter here, I really really missed. Having grown up in Aberdeen through the sixties and seventies, well snow was something we didn’t just see once every few winters, it was every winter and we had days and days of it. It wasn’t even just my childhood that was filled with snow, in fact, other than when I lived in Plymouth, I can’t remember a single winter where there hasn’t been enough for a decent snowball fight and a good sized snowman. Snow is the one thing that still wakes up the child in me without fail, but oddly the most fun I ever had in the snow, was right here in Glasgow, when I woke to find that it had unexpectedly been snowing. It was 2 am, I woke my then boyfriend and we headed out to build a snowman, one huge one in the garden area behind the flats overlooking the river and about a dozen tiny ones that we placed on the bonnets of every car in the car park. I never understood why being an adult meant you couldn’t have fun, actually if we think about it, we can have more than most kids do as we don’t have anyone to tell us no. We were asleep when most of those cars left, but to this day, I have this fanciful image of all our snowmen driving around the city making people smile. My snowman years may be behind me, but that doesn’t stop the child wanting to just know that it’s snowing out there and somewhere someone is doing just what I would, if I could just get out there.

Memories are funny things, there are the standout ones like the above, that I pray will never be taken from me and then there are the everyday ones, which far too many of already seem to be muddled or missing. Just like the room in one of my previous homes that I still know without the slightest doubt was there, yet even months on after losing it, I still can’t remember what it was used for, or even the have the slightest clue what was even in there. On it’s own, well what is one room out of a lifetime, but it isn’t just one room, I have more and more gaps, all with doors over them that I can no longer open. I can still remember clearly almost everything about every home I had as a child, the main events of my childhood are still there, even those that I truly wish I could forget, are still there as vivid as ever, but the names and the faces of those who were around me, well they have faded. Move forward into my twenties and strangely things get even worse, I don’t understand why but like that room, I know there are things missing and it’s not just people, but events that have gone or become mixed. It’s odd to explain as on the surface when you say you have forgotten, well that sounds like there should be nothing there, but it isn’t like that at all, as what you find are truly disturbing gaps, horrid spaces that taunt you like some kind of spectre, stood there in your mind telling you, you’re not allowed to access there. I never understood before why people with Dementia or Parkinsons were portrayed on TV and film as disturbed by not being able to remember, forgetting surely meant they wouldn’t be aware of anything wrong in their mind, now I am beginning to understand. For me it is silly things that I can’t quite see any longer, things that I can brush aside as they are small individual spaces, but there are enough of them now for me to empathise with those who have lost so much more than me.

I would have to say the most useless bit of advice anyone can ever give someone like me, is to say to them “don’t worry about it, it’s not important”, it is only not important when it is someone else not you. It doesn’t matter what it is, memory or a some other symptom, they all matter when it happens to you as it’s personal, especially memories. My PRMS can do whatever it pleases to my body, in fact, I would give it permission to if it just left my mind alone. The physical is always manageable, there is a pill or a trick or a way around, but none of those things work on your mind. I know many people build what they call memory boxes, well that one is almost impossible for me as I just don’t have the things to put in it, nearly everything in my home is new to me, my history has been wiped out more than once and I started again going forward without anything to remind me of the past. A few years ago I built what I called a memory trail, where I put memories from my past into new objects that I have around me in my home, the idea was a good one, but one with a problem just waiting to happen, I can no longer remember all the things I tried to attach to each item. I fear for the generation of photo happy youth out there, the ones who take a million pictures on their camera phones but never print them, at best store them on a hard drive or possibly a cloud somewhere. They are setting themselves up for an old age of missing memories, I can say that with ease as how many people had their childhood captured on “Cine film” or even more recently video and can no longer view it, unprinted photo’s will hold the same issues for the future, they might keep the SIM, but will they have something to read it?

For now I just keep staring those spectres in the eye and keep trying to push past them, maybe just once I will win and not just find half a step forward that there is another one blocking my way. Memories matter, they aren’t just our life, they are us, they made us, formed us and built the person now here, without them, well do we really know who we are or why we do what we are doing today.


Please read my blog from 2 years ago today – 12/01/13 – Sharpening the focus

A bit of an unexpected early start this morning so I will probably allow myself some extra time asleep this afternoon as I lost an hour, just one of those things nothing dramatic. It is actually kind of nice to be looking at the clock and seeing how far ahead of my normal timings I am……..


I know I was out of the house for only a few hours on Thursday, but there were some things that struck me, things that you don’t see or pick up on from TV. In reality this is my 7th year of being housebound, during which time I have been out a handful of times for hospital appointments, all have been at the hospital less than half a mile from our home, but distance means nothing as I still required the ambulance service to get me out of my house and to my appointment. The system at the Victoria is very different from the Dental hospital, at the Victoria once you have seen the doctor you are taken to a closed weighting room, to wait for you pick up to take you home. Being locked away for most of the time you are out, means you don’t see people, the average everyday people that we all expect to see in our daily lives. On Thursday, I wasn’t locked away, I was sat where I could see everyone coming and going, patients and staff alike. I think it was within our first hour of sitting there that I had to ask Adam a questions, I had noticed to my surprise that the majority of the people I saw, including the staff, were all severely over weight, my question was quite simply was this average or was there something odd about the groups I had seen, Adams answer was average. To that point, I hadn’t really understood just why there was so much on TV about obesity and nutrition, in fact I did write about it the other day, but honestly, the difference in seven years is scary, I now fully understand why the medical profession and government are so worried.

That is one of the problems of being housebound that I hadn’t fully been aware of, or even felt happening, I am now locked in a time warp, yes I watch more news than the average person does, somewhere in the region of 4 hours each day and I have even learned an amazing amount about politics and history, that I never had the time to in the past, but I actually don’t know what the real world is like any more. Just like the appearance of an entire motorway and the changing shape of the human body, I haven’t been out there to see any of it, the world hasn’t stood still for seven years, I have. I was always a great people watcher, happy to be almost anywhere alone, as long as there were others to watch and a world to take in, I was happy. In a strange way I still thought that I know people and understand what drives and fills their lives, much of it I am sure has and will never change, but clearly the world out there is no longer the world I knew. No matter how much TV I watch and how much Adam talks about the real world, my view is time warped and things that I thought were just Adam, like never being apart from his phone, was proved to my yesterday to a culture, not an individual change. Something major has changed and possibly my time-warp actually allows me to see what is happening in an odd way, putting together what I know of people and based on my own life.

Our nations changing waist lines I think can be pinned on just a few things and I will straight away put the blame on two things, the recession and technology. As mad as it sounds, I know that when ever I was short of money, I put on weight. The why is simple, the fattening foods are often the cheapest, you buy cheap and filling foods, rather than the more expensive healthy smaller portions, we want to see our baskets bulging, not just slim pickings. On top of that we will eat anything left by our kids, as throwing it away is a waste, just as throwing out those items that are going out of date, we stop seeing it as waste food, but as a waste of precious money. My age group and older will still have the “don’t waste because you don’t want” mindset passed onto us by our post war parents, I found it hard doctrine to brake, add in no money and the pounds roll on. Technology gets the next built, sitting has become our pass time, TV, PC’s and even phones now stop us from doing anything else, how can you live not seeing the next meaningless message on our phones. I don’t think I saw a single person yesterday who didn’t have one, even the medical staff, all had one clearly with them, people constantly checking their block of plastic. That time we keep saying we don’t have, to go on a walk or do something like swimming, is there in abundance if we just turned them all off. There is one other thing that I saw already starting when I was still out in the world, people were already not stopping, their lives where a constant rush in their cars, not on their legs. A rush between school, work and home, never stopping to cook a meal, to think what is in it and to enjoy the whole process of producing a family meal, then to sit and take time to eat it together. The fast meal on the hoof when each individual wanted it, no one eating the same thing, but each meal individual in every way possible, had already begun. The something ping meal had arrived, no thought, no planning, no attempt to control what they ate, just the fast microwave what ever the cheap stuff is, gone in a second longer than it took to prepare, cardboard filler had been born.

I don’t know why but one of the things that I thought I would see that had changed, was fashion, but it hasn’t. I didn’t see a single person who if they had been walking past my seven years ago, that would have made me look again. Jeans, leggings, mini skirts were all still there, just as the big scarf draped, rather than tucked in to keep you warm and all the other oddities of style, have remained the same. I know I wasn’t in a club or any of the places fashion are most visible, but ordinary was the name of the game, even in hair styles, usually the most visible statement. I know that fashion isn’t something I follow, but as a past watcher, I was disappointed. It was my hair that I noticed the most, having hair to below your waist, doesn’t work well with seat-belts on stair-climbers or ambulance chairs. It also caused one of the few laughs of my day as when I was being pushed out to the ambulance to go home, the wind caught it and throw it all into the face of the ambulance attendant pushing me and a passer by, turned right round to watch my purple hair fly. I will remember that moment for a long time to come, not just because the poor man had to untangle himself, but it was the first time I have felt the wind like that for far too long. My last few years of going out, were simply from home to work and back again, my hair just touched my shoulders by then, as I had given into convention and cut it. It hasn’t been cut since and I actually don’t intend to ever cut it again, even if the odd outing means I may loose several strands to strapping and men.

Seven years away from the world, people do change and I have just seen it, I saw yesterday just how damaged our lives can be by time and fashion. I live on line, I have no other way of joining in with the world, but I will tell you right now, if I could suddenly get my health back, it wouldn’t be spent watching TV, or connected to a phone. I am suddenly old fashioned, but I think I would rather be that, I would rather be part of a world that has time for people, the real breathing ones around me, before the rest of the world. Yes, I would still be here, I couldn’t give it up any more than I think others would give up their phones, the world has changed, but the old fashioned me, well I show that daily on twitter. It’s all about caring and sharing, about people and loving them, where ever they are or who ever they are, whilst not loosing sight of those closest to you, an amazing number of people seem to agree. Is it just nostalgia, or is it we all really just want the same.


Please read my blog from 2 years ago today – 08/11/12 – A plan is formed

It was and is pride that wouldn’t let me ask for help and my writing it all down, then posting yesterday with the knowledge that Adam would read, had the effect of me bulling myself, and it worked. Adam and I spoke last night and we are going to try something between ourselves to see if it will make any difference to……