The best thing ever?

Sometimes, when I read back the words I have written in the past, both recent and distant, I often find myself surprised at just exactly, what I have managed to put into words. I can only guess that it is like everything else about myself, I have little faith in my ability, in this case, the ability to get across the true feelings and emotions, of what it means to be ill. Emotions have never been my strong point, yes, I feel them, just as you do, but I haven’t always been the best at showing them, and absolutly rubbish, when it comes to talking about them. What shocks me, is somehow I can put them into words, words that hold their power, even long after I’ve forgotten ever writing them. I’m not saying that I am a great writer, no, not even I can that be conceited, something all of us suffer from at times, it’s more along the lines that I am shocked at my ability to even make myself cry, both out of pleasure and from all too often, almost visible pain. It was in childhood that I learned to hide the extremes of emotion, then slowly, also the everyday ones. Emotions weren’t to be seen, only blind obedience, contrition and feigned happiness when tears felt more appropriate. I used to spend hours in front of my mirror working on that perfectly blank and serene expression, which somehow always failed when it was most needed. By adulthood, I had my emotions so well under control, that even I thought myself, cold at times. I suppose my habit of writing at speed and without great thought, just letting the words flow, means I tap into the true me, the one that was always there. In a way, I think it could be a good exercise for anyone to try. Trust me, the real you will appear right there before your own eyes, but remember, you can’t plan a single word of it, just the first line of each paraghraph, then let your mind run.

It is one of those wonderfully warped things about my illness, that tears now accompany almost anything. Let my brain sense even the tiniest speck of stress, and my eyes start to leak in a way that is impossible to stop or conceal. Chronic illness is probably one of the most warped things that can happen to anyone. Not even the cruelest mind in existence, could have come up with a better way of stripping away every learned behaviour, ever speck of self-control, to produce a more intense lesson in self. We all like to think that we know ourselves, you don’t, unless, you too are living with one or more of these monsters. They make you expose so many differing aspects of our personality, from our strengths to our greatest weaknesses, that self discovery is impossible to avoid. I never thought of myself as strong. I had had too many things happen to me, where others had taken control of me, when in my book, a strong person would have stopped them, and escaped their influence, that clearly, I wasn’t strong. So much had happened to me in the first half of my life, that proved to me, that everything they told me I was, had to be right. That is the problem with controlling people, they slowly chip away at you, diminishing every aspect of you, and you are left, a shadow of yourself, and so scared of that shadow, you even try to hide that. Like many, I thought that chronic illness would be the same. The images we are fed of frail people, no longer in control of their own lives, seemed all too familiar to me. It seemed so ironic, that I had spent so many years rebuilding myself, only for my health to turn on me, and I was once more facing domination.

I can’t find, or explain, what happened inside of me. I had spent so many years defending myself, and so many more putting right all the wrongs, that something, somewhere took the decision, that this time, it wasn’t going to be the victim. The other day on twitter, I replied to a tweet by saying something along the lines of, “PRMS wasn’t the end, in fact, it was the beginning of me”. I say along the lines of, as I can’t remember the exact words, but I remember the earth cracking truth I felt inside, as I read it back, before I clicked send. As I have said many times, words tumble off the ends of my fingers, direct from some odd point in my brain, that I don’t control. They just appear. The basic me, has always been there, I’m not saying that I became a totally new person, but that tweet was totally true. For the first time in my life, I was facing something that wasn’t going to deceitfully take over my life, this time, I was forewarned. Everything that I had inside me, all that rebuilding, starting over and over, had given me a grounding, for what was to be my future. But the final difference, took time to appear, and that, was this. All those things that I wasn’t “allowed” to let out, could pour out of me, clearly, without being shrouded in any way. Writing was my final salvation, my opertunity to learn to truly be me.

What you read here, isn’t just a description of my life, or just my health, what you read here, is me. The total me, the me, that I might even go as far, as saying, I don’t think even Adam is always aware of, well not until he too, reads it. Probably even more surprisingly, it’s also a me, that I’m not always aware of either. I’m not cold, I never have been, I just learned to appear that way. I’ve always cared passionately about everything and everyone. In an odd way, I am actually glad that I became ill, because, it has taught me so much about myself, about my life, my strengths, and weaknesses, and most weren’t what I thought. Best of all, there all here to remind me, whenever I forget, life long training doesn’t disappear over night. Being ill, could be one of the most positive things that could have happened to me, as a person. It’s a truly hard way to learn, but I’m glad that I have had the oppertunity to, as otherwise, I might have missed it all.


Please read my blog from 2 years ago today – 03/01/2014 – Step by step

And normality returns, well I like to think it does. With Adam now back at work and the house no longer filled with foods that no matter how tempting they are, really aren’t good for anyone, there is a feeling of……

Three weeks on: Bacon delight

I think that light has just turned on and my wheelchair and I are at peace with each other. Actually, it hasn’t taken as long as I feared it might, but I am actually now quite content with the fact that I am a wheelchair user, again. All those divots that I had dug in my knuckles, well they are healed. Yes, there are still a couple of scabs, but they are small and haven’t been opened, for over a week. I think the change, though, isn’t down to being able to get around in it, it is really about feeling comfortable and at one with it. We are now a partnership. OK, that sounds a little hippy-dippy, but the fact is that is what it takes. You have to be able to sit down in and not feel that the house and it are the demons, these living breathing creatures that have one conjoined purpose, to chew you up and spit out the scraps all over the place. The last couple of days, I have even found myself making lunch, lunches that had to be cooked, then sitting in my chair using the tray/bag as my table, while I enjoyed my food and feeling totally comfortable doing so.

On Thursday, I cooked crispy bacon, in a frying pan, while sat in my chair. I didn’t have to get out of it to reach anything or to be comfortable. I could see and reach even the furthest back second of the frying pan to flip the bacon with a fork and for once, I even got the timings right, perfect crisp rashers of bacon, delicious with whole grain bread and ketchup. Yesterday, on the menu were muscles in white wine, cooked in the microwave, but done without burning myself on the obligatory overly hot dish. From cooking to eating I enjoying it all. They were both enjoyable, not a struggle or a dangerous game, just plain simple enjoyment in not just the cooking but the eating, because I had done it all, with my chair helping not hindering. I even got up at 3:00 am this morning and without turning a single light on, I made it to the bathroom, then the kitchen, for a cigarette and back to bed. I was cloaked as close to total darkness as any home has these days. Just those specks of LED, giving me an idea or distance and direction. None of which were in the difficult areas, but enough to just as when I was on legs, to confirm I was heading where I wanted to be. That is what I mean by being one with my chair. I have done all those things that an able-bodied me, wouldn’t have had a second thought about, and neither did I the apparently disabled me.

In fact, if it wasn’t for the muscle fatigue and spasms that they cause, I would say I am not disabled in my everyday life. Four weeks ago I was disabled, I wasn’t able at to do anything without that constant fear of falling. That fear was often enough to stop me in the strangest places. I would be hanging onto walls, walls that had nothing more than their solid form to comfort me that I was safe. The chair didn’t fix that at first, it actually kept me in that disable mindset during the first two weeks. It disabled me because it was difficult, it was making life harder and more painful, not what I was looking for at all. No, I wasn’t in danger any longer, but I wasn’t willing to do anything beyond the tiniest things, those that couldn’t be avoided. Yesterday, while the muscles were cooking, I didn’t sit there like a lemon. I tidied a few things in the kitchen, rearranged the cupboard where my nebulizer now lives. Shifted the bowls I had taken out of the main cupboard because I thought it too hard to get to, and put them back in the space they have always lived in before. It’s not too hard, I can do it. I can reach that cupboard, just as I can do everything else, I just need to trust my instincts, not my fears. So, OK, it wasn’t spring cleaning, but I was being useful, part of our home, not just an object within it. I haven’t been that for a while. Ten weeks ago, I wouldn’t have done that, I was too scared. All that walking back and forward across the void known as our kitchen, especially carrying a pile of fragile bowls, wouldn’t have happened. That fear, the fear that my health had planted in my brain, was disabling me even further every day.

It was that knowledge that moved me on, it was the reason I knew I had to at least try to use my chair again, even though I doubted my ability, I had to try. I think it would have been impossible to have removed that fear without replacing it with something else, unfortunately, what I found was almost as bad, doubt. Years ago that was a word that I banned from my life. If you doubt yourself, you will never achieve anything. I through it out and suddenly there I was, Scotlands first professional female DJ. I was gigging in the biggest and the best venues, I was the headline, not the warm up and that had never been done by a female. Now it is every day, but I bet not one of them knows who the first one was to break the barriers down. I pushed myself again and in my next role, to be amongst the best sales people. Then to teach myself everything and more to actually have a true profession and a place in the business world, and to stay there, despite chronic illness. Four weeks ago, I doubted myself so badly, that I believed that I wasn’t capable of using a wheelchair in my home, without damaging both it and I. I let doubt, stop me and cripple me. Like most things, you don’t recognise it in yourself. You tell yourself there are a thousand different reason for what is happening, apart from the real one. I didn’t wake-up to that doubt, until the first time I made it through the house without thought. Without thought, I hadn’t doubted and without doubt, I had success. Doubt is now banished, I have freedom and I also have the enjoyment of everyday life back, no matter how fleeting, it’s there.

When all you have lived with for 14 years, is the knowledge that your body is failing and with it, your life, it’s hard to have that kind of self-belief. When you know that every step you take is possibly the one that could land you up with broken bones, or worse; when you can’t even trust your brain not to forget, even to feeding yourself; when your limbs start disappearing, to the extent that you can’t feel or find them; when your life has diminished to the point you never imagined was possible, doubt and fear become intertwined bedfellows. Remove one and the other moves in, I just hadn’t realised to the extent that they had taken over my life. My liberation from them in the last few days has been eye opening, yet hard as well. At times, I have felt truly exhilarated by it, but it has been tempered by normality and my normal life’s frustrations. Then come the crashes, not of me into things, but things into me. Those things are the facts that can’t ever be changed, the fact that I am just as ill as ever, being mobile, doesn’t change that.

On the practical side, I have made discoveries as well. One thing I need to purchase that I simply hadn’t thought about at all, is baby wipes. Having never used my chair in the house before, I clearly hadn’t had to deal with the combination of chair and food. I eat nearly everything with my fingers. I have never been a lover of knives and forks for foods that don’t really need them. Food is just so much more enjoyable when you use your hands, it is an added sensation and pleasure that politeness stole from us. The society and it’s conventions that I grew up with said you simply didn’t do such a thing, it was rude and a sign of bad breeding. It was one of my guilty pleasures when alone, now it’s just a pleasure. When you have legs, you walk and wash you hands whenever needed. In a chair, you can’t do that. First you spread it all around your wheels, and then everything else you can’t help but touch until you finally get to a sink or cloth. Once your hands are washed, where do your hands go first, back to those wheels that are covered in food. It is worse than having a kid with sticky fingers and there is only one answer, baby wipes. The wipes are going to live in my bag/tray, something that has been worth every single penny that I paid for it. They have to be as close to hand as possible, so there’s no point having them just here at my desk, or in the kitchen, they have to be as mobile as me.

By having a small box in the living room, just beside where I park my chair, now also means that those transitions of myself, the phone I have to take with me all the time, bottles, bowls and anything else I might want to move with me, is now so much easier. It’s not a problem when it’s just two items, but over that, and it turned into juggling, which although I practise daily, I’m still not good at. I am beginning to realise that small adjustments are going to keep appearing as my confidence and ambitions increase. Once you make one discovery of something you can do or is enjoyable, it always brings other things with it. Nothing in a wheelchair is as easy as you might think it is going to be, but I think from here on in, it should just be small tweaks not major changes.

Week three has been enlightening and depressing, confusing and eye opening, it has been life in an unchanged world, that has somehow been turned on its head. I so want Adam to see and feel what has changed, yet it appears that his world has been affected in the opposite way from mine. To me I have been given back a window in time, to him, I have taken one more step along the inevitable road. I guess that perspective is probably more important than an impression, but I like the impression and I am content to enjoy it for what it is, even if the reality is the total opposite. My wheelchair may well be just another symptom of my health, but that doesn’t mean that it can’t also be a relief and a rebirth of an odd kind of freedom, if freedom can be found in a bacon butty.


Please read my blog from 2  years ago today – 02/10/2013 – The archeology of life

Yesterday afternoon, I found myself thinking back to something I mentioned in my post, just one item from it and one item only, a black velvet coat. I am not sure how I managed it but I persuaded my grandmother to let me have it, she used to wear it….