An important question

Another day, without another dollar. Not even the sayings I heard bandied about when I was a child fit my life any longer. I’m not complaining, some of them were rather stupid in my opinion. For a start, I live in Scotland, what good is a single dollar to me? So OK, I’m being facetious but “I’m allowed to be, I’m dying”. I always wanted to be able to use that one, but now it’s true, well it doesn’t have the fun it once held when my Gran got away with everything, by saying it. I can still remember her sitting there spoiling me rotten by stuffing sweets in my mouth, as my Mother scolding said “Mum, stop it, I’ve told you before, she doesn’t need sweets”, and Gran would wink and hand me another one, while saying, “I’m allowed to spoil her, I’m dying.” It wasn’t just said when it came to sweeties, it was her answer to anything anyone told her off for, and it seemed to me, they told her off a lot, even more than they did me, which looking back, would have been hard. Gran’s slow demise and it was slow, about 12 years if I remember correctly, is the only model I have for how you do this gracefully, with a touch of disgracefulness on the side. As it turned out, I wasn’t there at the end. When my parent divorced, we lost contact, and by the time I could even bare to talk to my Mother, well my need and trust for my family were gone. Hurt is a very deeply plunged sword when you’re abandoned to the clutches of a monster, by the person who should have protected you. Even now, my relationship with my Mother, is in ribbons, too much has happened, too many years have passed, for it ever to be healed. I can, though, look back now and see my Gran was a renewed innocence, but then, I just saw more swords. When the day eventually came, I was at the other end of the country, having managed successfully to evacuate myself from the war ground. My first marriage took me nearly 600 miles away by train, as far as I could get, and that was the cherry on top of the whole thing. As luck would have it, within a month of my escape, she took to her bed. Two weeks later, she simply went to sleep and never woke again, the perfect way, if there is one, for a life to end. I didn’t actually find out for over a week, by which time, she was long buried. Not having a phone, meant I wasn’t told until I did my monthly check in with home. I never understood why I kept doing so, somehow those rules of “honour thy Mother and Father” never truly breaks, regardless of what they do to you.

No one tells us, or teaches us, just how to head into what is one of our most important journey in our life, how to die. It is our ultimate action in life and so important, as it is truly the only thing you ever get only one shot at, no rehearsal, no practise run, it’s a one off and if your not happy with it, well tough luck. It’s coming up now for 3 years since my consultant set my personal countdown ticking, and it’s a sound that no matter how hard you try, you can always hear, it’s there in the background of everything. I’m not meaning to imply that you don’t forget, or that it’s an oppressive element in every day, of course, you forget at times, but it always finds a way to enter into your head again, it’s never totally gone. Just like my Gran, I am in the midst of a long slow demise, but unlike her, I don’t talk about it almost every day. Maybe I should, maybe she had the right approach, to turn it into a joke, but somehow, I find it easier not to. Not for my sake, but for Adams, I don’t think I could ever find the right words, that would make him ever smile at that subject, ever. In a way, though, I do think she had the right approach, if maybe a little too frequently. Talking about death freely, I believe would make it easier for those of us facing it. There is nothing more foreboding, than something that is a taboo subject.

When I was diagnosed with PRMS, I like anyone who is diagnosed with a progressive condition, I asked how long I had to live. Whatever variant of autoimmune condition you have, the answer always seems to be the same, they don’t know. To this day, I still don’t believe that, I am sure, that they could give a good guesstimate, an average if you like. It was very different with my COPD, that is where my clock comes from, 10 years. Even with the unknown factor, of my PRMS, which is slowly closing down my lungs, they were happy to give me that guesstimate. So, OK, it’s not accurate, but, there is an odd comfort in at least having a goal, one that lets you sort out your thoughts, not to mention, all the legal bits that are needed these days, and of course, that funeral. I still have 7 to go, but it’s the first of those three, that I am still toying with, it’s still my thoughts, that are my biggest issue. I thought the hardest thing would be just accepting the fact that I was going to die before, what is commonly called “my time”, but what is “my time”, because when you think about it, we really don’t know. It’s not as though we are born with an expiry date and our health has changed all that. “Our time” is quite simply when it happens, there is no magic date or true expectancy.

Knowing I’m three years into my ten-year clock, ticking its way down continually, doesn’t bother me at all. It’s the actual act, those last hours or minutes, that I can’t get my head around at all. In fact, I would extend it a little further, let’s say that last weeks. I could write you a list that would just grow and grow as I went, from the obvious to the personal, my questions just keep coming, as I don’t have that training, the knowledge or experience to know where to start. Worse than the fact I have so many questions, I don’t know who to speak to, to find the answers I so desperately need. Something inside me says that this isn’t something to read about, it’s something that needs to be discussed. Right now, all this is in the front of my mind, thanks to those damned drugs. No, I didn’t think I was dying, but I had a feeling that what was happening to me, wasn’t that far from the truth. As I’ve said before, I don’t have a fear of dying, if death took me that way, suddenly, well that would be fine, but the truth is, it probably won’t be that way at all. How is it, in this enlightened age about everything, something we have been doing since the first human appeared, that we can have no idea, how to be sure, it’s the way we want? How do you have a good death, not just for you, but for those who love you? How come, no one teaches us this stuff, as I don’t know where to start or where to turn. For the first time in my life, I am at a total lose and I feel like I have missed something along the way, that important lecture, that tells us how  to do this just right.

I’ve never seen someone die, nor even a dead body. I have only been to three funerals in my entire life, the first, my own sons. Death has been so skillfully kept away from me, that I now feel as though I know nothing about it at all. If I were mobile, well, I think, I know the people I would go and talk to. I believe, that I know those who could put my mind at rests, but I can’t get to them, and to get them here, seems wrong when I still have years, not just months. Once you are housebound, it’s not just living that becomes more difficult, it appears death does too. I feel like an innocent, facing what appears to be a devil, but one I know can be tamed, if, I just had the right tools, tools that like so much else, are just not available to me. I also know that in the next couple of days, I will pack this all away, put it back in the box it escaped from last night, but I also know, it won’t stay there. This is something that haunts me.


Please read my blog from 2 years ago today – 11/01/2014 – Control of me?

I had a subject that I wanted to write about this morning but something made me do a quick search on my blog to see if there was anything that was close to today’s post and there was, not only close……



It will be a good New Year

The start of year nine, I don’t know what I thought would happen when I became housebound, but I never once thought that I would be sat exactly where I was nine years ago, counting the years. Mind you, do we ever look that far ahead of ourselves in our future reality. I know we all have dreams and plans, but that’s not the same thing, what I’m talking about, is really imagining and putting ourselves “into” our future. I don’t think any of us do, simply because we can’t truly see our future. It doesn’t matter how much detail we amass about our health, none of us can truly imagine ourselves in those final stages, not us, other people but not us. Even when we were diagnosed with whatever horror our doctors found, we didn’t actually look into our future in detail, only in the most general of terms. All of us draw up a worry list, almost immediately those words were spoken. It probably started with the fear of having to stop working, how we’ed pay our bills and would our families stand by us, or vanish as we grew iller. All valid concerns, but none, have a single thing to do with how we would feel, how we would survive mentally, emotionally and even physically, or how we will deal with our health vanishing and not being able to do anything we wanted. We don’t think of future pain, future inabilities and how long we will have to live housebound or bedbound. I for one didn’t think about any of the things, that really matter to me as an individual, not as a partnership, or a member of a family, I mean totally and narrow-mindedly about myself. Every single thought I had, somehow, included Adam. Now that’s not a bad thing, but as this is happening to me, why didn’t I think about me?

It was in the first week of January 2007, that I had to come home from work as I couldn’t manage my wheelchair as my left hand was dead. Not being able to manage my chair, meant I couldn’t manage the office and I was going to have to work from home. I don’t remember it ever entering my head that I wasn’t going to be able to leave here alone ever again. At first, I know that I thought it was just a matter of time, my arm would recover and I would be free again, but by the time it did, other things had progressed, and I was never to leave again. So maybe that’s why I have no memory of looking into what me true future was back then, because, I couldn’t see it, I couldn’t believe, that I was housebound forever. Looking backwards, it’s easy to see why we don’t see the truth, even when it’s staring straight at us. We lie to ourselves, over and over again, painting a glossy picture, as we’re us. What the doctors or those websites say, is about other people, not us. None of that, well maybe the mildest parts might, but the bigger, bader picture, no, not us. Those lies are what keep us sane, able to cope, able to get on and live our lives, even if that life is a lie, it’s better than the truth.

I remember when I was at the hospital for my chemo, and there in the waiting room was this lovely and loving man. He was sat there talking to his wife, who was sat in a wheelchair, not like mine, but one that she was strapped into. Her head hung to one side and her voice was so weak and so slurred that only he could understand her. He sat there wiping away the saliva that escaped the corner of her mouth, ever time she tried to say something. Although he was clearly engrossed in his wife and her needs, he took the time to talk to me. His wife was my possible future, she too was there for chemo, just two months earlier, she had been fine, then she had a flare, the result was there in front of me. I felt like a fraud. My health was bad, and I was creeping forwards far too fast, towards losing my job, but in comparison, I was fine. I still hope that the treatment worked as well for her, as it did for me, as I never saw her again. Even then, at that very second when we were facing each other, I couldn’t imagine I could ever be like that, because, I was me. Conceited, no, just self-defense, I didn’t want to believe, I didn’t want to see or even think, that such a thing could happen. My blinkers were firmly fixed and firmly closed, to my future. This, though, was the year, when I first saw a single sign of that lady, in me, and it hurt, it really hurt. None of us want to believe, the worst can ever happen, or the end is ever getting closer.

It’s been a year where anyone who has read my blog throughout it, will know that my health started to race, started to take me into places, I hadn’t wanted to even think about. The start of year nine, finds me in a totally different place, than the start of year eight. Even this time last year, I couldn’t see or believe that what has happened, would or even could, yet here I am, still me, but a lesser me, a somewhat diminished person compared to just twelve months ago. The new year is all about looking back and looking forwards. It’s taken me almost every year of my age, to realise, we are actually only capable of doing one of those things. None of us can even glimpse our future, without having touched it. When we look forwards, what we see is totally determined by just three things, our belief in ourselves, our attitude and hope, the strongest of the three, has to be hope. The belief in ourselves will take us a long way, if we’re determined, even our health can’t take everything we dream of away. Our attitude, well that takes us that bit further, as used correctly, it sees our dreams as never defeated, just needing that bit more work, but we’ll get there. Hope, well hope is going to make this a wonderful year, as it’s hope, that fills in the adds the gloss and the glamour, that makes life far more than just worth living.

My ninth year of being housebound is going to be another good year. I know that, I can’t see it, or predict it, I just know it. Just as I knew every previous year would be and was. Life is good, if you can smile and laugh, if, you can feel the love, of those you love, if, you can feel the care, of those you care for. Whatever our health does to us, well if we have all that, we can survive it, more than survive it, we can get on and live our lives, in hope and happiness.


Please read my blog from 2 years ago today – 01/01/2014 – Happy New Year

2014, well it’s only begun so I have incredibly little to say about it, yet, give me a couple of days and I am sure that that will change, but of course  I hope all of you have a Great New Year. I didn’t make it…..







Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.


Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Joining the dots

Every cell in my body is no longer just tell me, they are changing, they are now screaming it, so loudly, that my head is ringing with it. It’s about six months ago that I first felt that I was in danger of being on my feet and that my wheelchair, was once more, needed in my life. At about the same time as I found that not only; were my legs muscles becoming a fan of just collapsing; every sensation my PRMS had found to play with, had also become heightened; so to where my tremors, they were increasing; my spasms were more frequent and favouring the more intense, and my mental symptoms were, well they too were more intense; everything was moving, and moving rapidly. Six months is an incredibly short time, it’s not like when we were children, when months lasted forever, now, especially now, they have become incredibly short.

When that day came that I let the words actually come out of my mouth, “I need my wheelchair”, I had this huge lump in my throat. It was all well and good, thinking it, thinking it is safe, it’s silent and no one other than you knows that thought is even there. Saying it, is like writing your own death warrant, there is no going back. Admitting it to the world is a very different thing from the world telling you. If a doctor or the MS nurse had said, “Well Pamela, I really think you are going to have to use that wheelchair”, well I would have had someone to blame, an outside observer who had diagnosed a weakness, but I just had me. I think it was the first time where I have been the only one, behind changing my life, prescribing what was needed to deal with the course of my health. I was also doing something else, using a great big piece of equipment as a foil, not to hide me, but to hide what I didn’t want to see, or even think about. It partially worked. It was a distraction. I had to buy this or that, make sure that I had the optimum space to manoeuvre in, without rearranging the entire house. Things to do, things to think about, anything but stop and admit. I could bypass everything other than my brain, it has a nasty habit of showing the world my shortcomings. Stutters, slurs and blanks, appear throughout almost every sentence I dare to try and speak. Adam, well he’s used to it, but my visit to the hospital two months ago put a spotlight on it. The consultant spotted it the second I entered the room and tried to speak.

No one but us, knows about those maddening sensations, unless, we tell them. Well, no one can see a tingle, or a lightening shock hugging our skin, not even us. Unless we jump, squeal or flinch, they are our secret. Which probably makes them one of the hardest things for those who don’t have MS to understand. Yes, we can explain, that they feel like this of that, but the average person, they only feel something similar for the briefest of seconds. They have no concept, no understanding, or any way of even imagining, what it’s like to feel them for hours, days, months or even years. Pins and needles, so what there nothing. Maybe, until you have them running across your face for a whole day. Nothing, until someone, turns those pins into knives, and those needles into spears. So numbness, well it must be a joy to someone who lives in pain, isn’t it? You might think that, but MS has a trick unique to nerve illnesses, we can feel both, in the exact same spot, at the exact same time. Internal feelings have nothing to do with the real world. If you apply moments though the danger of numbness is real. Burnt hands from an oven, fingers from a cigarette, cuts that you don’t know are there, that fester before you spot they exist. Food and drink that falls from your mouth as you don’t really know if your lips are closed or not, as you can’t even feel them, or the food. Sensations matter, be it missing ones or created ones, if they aren’t exactly or even close to what they should be, they disrupt everything, create danger and generally, make life hard.

Last week, I described a bad spasm, bad, not because of what it did on the pain scale, but because it made my health all to visible, in a not too pretty way. Not all spasms are visually dramatic, many, like those who take sheer pleasure in stopping me from breathing, constrict, just below that pain level. To find a point, in any day, where either my diaphragm or my intercostal muscles, haven’t held that position, in the last couple of years, is hard. In that same period, I can’t say that for any other part of me. 2 years ago, I went days without feeling a spasm anywhere else. That was the point when my PRMS found my intestine, but still, the rest of me, I went days. When they came, well in comparison to my torso, I really didn’t care. They were there, they were annoying, but they didn’t last, and they didn’t hurt, beyond a normal cramp, or stitch. They were mundane and forgettable. Technically, a tremor is nothing more than a fast twitch spasm, yet when it comes to dramatic effect, back then, my tremors won hands down. The spinal twitch was the best, it swung my enter body, from my toes to my head, in sharp jolts, from side to side and still does. My hands before my chemo treatment, did a complete and expert impression of late-stage Parkinsons. Post chemo, they settled to odd spells, that never lasted long and I could hold my hand out in front of me, not steady, but not flapping all over the place either.

So why the requiem, because all of this, just like the need for my wheelchair has changed too, and in just as big and as solid away as moving my chair back into my life has. My first paragraph, well it laid out the glimmer of the facts. My legs were the dangerous factor, the one part that was partially fixable by adding my chair. A wheelchair doesn’t make your legs stronger, it doesn’t stop the muscles from collapsing, and you don’t have to be standing to feel it. You might not think you are using you leg muscles when you are sitting, but you are. Sit there and totally relax your lower body and you can feel the difference. When it happen unconsciously, it affects your entire posture and body. Suddenly, you have what are in all respects two long lumps of flesh with pins in them. They are closed off, separated from reality and feel just as dead, as they would be if you tried to use them to stand. When you are in a wheelchair, believe it or not, unless you are a paraplegic you use your legs in every push. Dead legs, make every push twice as hard as they are with your legs to assist. Now add into this, the fact, that that feeling of weakness, and even deadness, is now appearing in your arms. I now, especially at the end of a day, find myself sat in a chair that I couldn’t move without, but with little of the strength or movement required, to actually achieve propulsion. My foil now feels more like a folly.

Spasms are now stronger, but that isn’t what bothers me, it is their weaker cousins that are making life tough. Doing simple things like lifting my feet so they can sit on the rests on my chair, is now literally, a hit and miss process. My muscles jump, kicking away and far too often, into the foot rest. The precision required to place in where needed is almost gone, just as it is when I’m walking. My left leg is far worse than my right, and if I had to take more than a couple of steps, would without a doubt, trip me up. Just standing can be enough, to send it off in some kind of fit, twitching and flicking itself all over the place. At it’s worst, I don’t need to even stand, it just twitches unstoppable, and those twitches in my hands, are returning. If the worsening of existing and the return of the once fixed wasn’t enough, now I also have the vanishing voice. I haven’t mentioned it for a couple of weeks, but it hasn’t gone, it just comes and goes at will. I had to mention when I was at the hospital, as it chose Monday as a good day to vanish. At least my PRMS chose that day to show itself and its latest trick.

I felt all of this growing, just as clearly as I felt my legs leaving. My concentration on making life in a wheelchair work, for me, allowed me to, not so much ignore, but more, to put aside as secondary issues, everything else. I couldn’t ignore the change in my breathing, as yes, that too appeared at the same time. Clearly, something six months ago kicked my progression into high drive. I don’t know what, I just know that my body is falling into the abyss, faster than it has done since 2 years after my diagnosis. Then, Mitoxantrone was the answer, but that was a one-off, I was told then, that I could never have it again. It does so much damage to your heart, that they don’t dare do it again. So this time, I am on my own. I know Adam has seen all of this, just as I have, he would have to be blind to not have. Like the sweetie he is, he chose to respect my lack of discussion and the blind eye, I was clearly turning on it even in here. So now, I have publically joined all the dots, brought together the fuller picture, now I just have to work on living with the results.

Please read my blog from 2 years ago today – 13/11/2013 – Sharing the same space

My day was in a bit of a muddle yesterday, it seemed OK on all the main points and I even completed the shopping that is due to arrive this morning. I don’t know how or where it went wrong but I was……..

A silent power

I found myself yesterday lunchtime, sitting in my wheelchair enjoying a cigarette and watching Eastenders, I missed it the night before, totally my fault, I forgot about it. A programme I watch four evenings a week and I forgot it was on, only my brain could be that thick, and that stupid, but that’s another story. Anyway, I was sat there, just staring at the screen when suddenly I noticed something. To be honest, it was more of an awareness rather than something that actually happened. I knew that I was sitting there slumped to one side, with my head tilted even slightly further over, instead of sitting upright as I usually do. My legs were slanting over, so that my knees were together, resting on the chairs frame. I felt like a sack of potatoes, but it was more than that. Probably because I still had my tray/bag strapped to the front of my chair, for a second, I was aware that I was the mirror image of all those people who I had seen at the hospital when I was on the neuro ward. The only difference was that my jaw wasn’t hanging loose, and I wasn’t strapped to my chair to stop me sliding off. I felt terrible, firstly, for even thinking such a thing, and secondly, because it scared me. Everything seems to be rushing at me lately, this latest mental muddling of fact and memory, made me feel even more as though I am racing into the future, one I felt only a few months ago was miles away. I know, I don’t need anyone to tell me, that I’m a long way from where those poor individuals had landed, but I felt a comparison, one that was too close for comfort.

Sometimes, our minds can take images like that and thrust them into a scary reality that doesn’t even exist, but it doesn’t stop you feeling and seeing them. I almost instantly pushed my back into the chair and thrust myself into a fully upright position. If the tray hadn’t been fixed securely, I think I might have flung it across the room in anger. Except the anger wasn’t at the tray or the chair, it was at life. It’s moments like those, that makes me sure, that I am in a grief like state, otherwise, I would have just shook my head at myself, and possibly laughed as well for being so silly. I actually wish now, that I had brought the chair out of the cupboard back in July when I first started thinking about it. If I had, I might not feel as bad, as I am sure it is a combination of my lungs, now needing twice daily care, and the wheels together, that has brought this whole thing on. Minds are contrary things, why can’t it just be happy that I am in less pain and that I can at least breath with some more ease. No, it has to get itself into a spin about losing control and needing more and more care all the time. Just to make it even more stupid, I am coping wonderfully with the chair and managing to do more and more almost daily. There is little that I can’t manage with 100% more ease than I did on week one, so why is my brain make life so hard?

My mood yesterday wasn’t helped by one other thing that happened. Having written a glowing statement about how I was feeling better and that my pain levels were lower, I went to bed on Thursday night and almost instantly, my lungs clamped. So, OK, runs of spasms happen all the time, but it has been over a week since that my chest literally just clamped solidly down. When it happens, it is always triggered by a run of intercostal and diaphragm spasms, then out of nowhere, someone suddenly sits on my ribcage and tightens it like a corset. Just like a corset, it is tight, but I can still breath as long as I keep those breaths shallow. Once more, I was lightheaded, with my pulse thumping through me. I was engulphed by the feeling that if it wasn’t for the fact that I had to keep thinking, keep making sure that every breath was perfectly measured, that I would pass out. My night time normality was back, along with the morning doubts over whether or not I had fallen asleep, or fallen unconscious. I know it was stupid to have even thought that I was going to be free of this, but it was the longest break that I have had for weeks and weeks. Being human and hopeful, is often the worst thing we can be. It often feels like the best state we can ever be in, is accepting, that way, disappointment doesn’t stand a chance.

I have often wondered if that is actually the reason that my life with illness has been easier than many peoples. From birth to adolescence, I lived in splendid Victorian obedience, no questions, no complaints and no free thought. I didn’t even dare to express likes and dislikes, I wasn’t allowed any, but at that age, you don’t question, you accept, as that is life. When I found a voice, they only heard it for less than a year, as when neither confinement nor abuse, restored my deference, I was thrown out aged just 13. It didn’t end there, though, yes, I had a window of fewer than three years of being me, but I ran straight into another life just as hard. My entire life through to the age of 28 had been once more one of compliance. I had learned that fighting back was pointless, things just got worse, but if I let life happen, I would survive to live another day, and survive it in less pain and misery. It may not be the right way to learn anything, but I learned to accept and if there is one thing that makes life with chronic illness easier it is acceptance. There is no point in fighting, you can’t win, you’re not going to win ever. Everyone who is diagnosed with a chronic illness quickly learns that their illness is invisible, others can’t tell you are ill just by looking at you. What most miss, is that you can’t punch an invisible foe, and you definitely can’t punch yourself, well at least not hard enough to make a visible impact. I recognised it with ease, and fell into line, compliant and obedient, but this time, still with a voice. My root to that conclusion may not have been conventional when it comes to illness, but I honestly believe, that for once in my life, accepting, was totally the right thing to do.

To date, I have been the perfect patient to my health. Everything it has thrown at me, I have worked with and accepted. Not always with good grace, I am not that lily-livered, well at least not yet, but I have done the right thing, not to nurture it, but to nurture me. Self-preservation is an involuntary act, but there comes a point where the balance is suddenly uneven and there is nothing you can do about it. Up until now, I have seen myself as a complete person with a future that isn’t one to be afraid of, it was too far away for that. My immediate future, well, it was to continue very much as is. I am housebound after all, what more could I lose? I already have been reduced to being in the ranks of the unemployed, not even being able to be a housewife by choice or otherwise. My life has polarised, I am sat daily in the same place, after spending the night, asleep in exactly the same position as I have slept in for over 2 years, flat on my back, unable to move. Every day starts at the same hour and ends at the same hour. Nothing changes, not even my range of foods, limited by what I can swallow and what my intestine can work with. I take the same drugs, drink the same liquids, move around the same 4 rooms that I have lived in for 8 years, unable to leave unaided. I see the outside world rarely, and when I do, it is at the bidding of the NHS, and with their assistance to exit my own home. All of this I accept, this is my life and once appeared as my future, but that’s now changed.

The image that jumped into my head, that is my future. I have always known that, always been aware, that my end wasn’t going to be pretty. A diagnosed off PRMS, take dignity from our final days, weeks or months, and all beauty is removed from death. It doesn’t matter how accepting or not I am of any of that, as I can’t change it regardless what I want, that is my written future. When my legs started to leave, I wasn’t ready to accept it, I don’t think I am really ready to even now. When I needed my chair the first time round, that was different, it gave me freedom, I could leave my home and go where ever it could take me. I couldn’t climb mountains, but I could explore the city, go to the pub and most of all, carry on working. It opened up the world. This time, this time it has changed nothing, only allowed me to continue, doing exactly what I was without it. It took, it didn’t give. It took that last bit of image, that tiny bit that said, I was me. Even my lungs need supporting, just so they can carry on, doing what they already did. To stay still, I am needing more and more, just to keep me here, stationary. My immediate future is going to be one of treading water, just keeping my head above the waves and waves there will be. The balance of my life has changed, I have entered that phase where life is about nothing other than maintaining where I am, but with growing and visible help. Never again will I just have to take a handful of meds and hope for the best, more and more of me, now needs direct action, just to continue. I don’t need to ask where that picture came from, or why, the reasons are clear. I just wish that like so many things, my mind had chosen to forget it, but no, it had to throw it at me, force me to face it, to acknowledge it and to hear it demanding, acceptance.

Please read my blog from 2 years ago today – 17/10/2013 – Asleep with more sleep required

I have had this idea now for a while that the next time life flung itself off a cliff that I was going to sit here and write, get it all done in detail as it happened. I wanted to take it through step by step, just how it felt and just…..