Time shift

Posted on April 12, 2016 by livinginalimitedword

I don’t know what even made me think of it, but the other day, despite the fact my birthday was a couple of months ago now, I suddenly realised that I’m now 55. How on earth did I get here? Time really has stopped for me since a few years after I became housebound. Actually, it’s not the first time this has happened to me, I was filling in a form when I was 23, it asked for me age, not my date of birth and I actually had to work it out, as somehow, I had held onto being 16. Which would have been really clever of me, as I had been married for 7 years and had two children.

My relationship with time has always been tenuous, probably thanks to my childhood, it stopped for the first time when I suddenly found myself totally alone. I lived from day to day, no family, no real home, just a room in the YWCA, my daily trips to school, and my memories of a life filled with abuse. Marrying at 16 was my escape. The day I got married, was the day I escaped it all, as my now ex-husband was in the navy, and we were going to live in Portsmouth. Love didn’t really come into it when I said “yes”. My “yes”, had far more to do with 580 miles we would be away from hell and his promise to look after me, love could come later. 16 was a good age to stick at, it was my escape age, but like too many people, I had left one hell just to find myself in another. No one likes to think of their lives a clieche but mine was. Six miscarriages and the death of my firstborn, when I was just 19, and a husband who’s abuse at that time was far more subtle than my fathers had been. By 23, I was once more longing to escape, something I thought I had done from life, when I was 16. Waking up to my age, sent me into another hell, as I had to woken up to everything that was happening, the realities of my life.

I didn’t know then, but I already had PRMS. Dealing totally alone with two small children, and being nothing more than the woman who looked after them, cared for his home and warmed his bed. While he had affairs and thought himself so clever that I didn’t know. I knew, I knew all too well, but there was nothing I could do. After all, I was useless, I wasn’t capable of surviving without him. Who would give me a job, who would employ someone so stupid, so useless? I fell into a deep depression and tried to kill myself. Locked away in a hospital, safe where I couldn’t harm myself, and my children deposited 600 miles away with my mother, as we then lived in Plymouth, opened a six-week window where I put myself back together, and he, well he did what he always did when I was out of sight. It did scare him, he thought he had been caught, that I knew what was going on, and even worse I was going to tell others, I did know, but I said nothing, I was as always to scared to say so, to scared to stand up for myself.

It wasn’t until the week before I was to marry Adam, when my then 17-year-old daughter Teressa, came to stay with us, that I learned my so hard fought battle to protect her from it all, had failed, she had always known. Both of us had had a couple of glasses of wine and we were talking about her childhood. I could see that she was clearly upset so I asked her to come into the kitchen to help me with something. I had an instinct that told me she needed to talk to me alone She had heard the arguments, my screams when he hurt me too badly and she knew all too well that I had hidden my bruises and my pain. She had heard it all, for years when she was alone in her bed. My tiny beautiful child, who I had spent so much time, taken so much pain in silence and had done everything possible to keep her safe from it all, knew.

My age stuck at 28, the age I found myself safe again, living in the hotel I had managed to get a job in, so I wasn’t quite so stupid. It stuck there until three years later, following a string of disastrous decisions on my part, found me in a bedsit in Glasgow, totally alone, and I dared to think, maybe he had been right all along. I remember how he gloated when he dropped Teressa off on the odd weekend, a gloat that lasted another two years before I decided to take control. I built a good life, I found a really nice flat, in a really nice area and closed for every his control over me. He could hurt me, and he did, but he was never going to control me again.

38, the age I met Adam. That age lasted three years, because they were good years, the happiest years of my life. Control was a word that never entered my head, just happiness, so in some ways, I had lost control totally. My PRMS lifted its head again and it did it with a force hard enough that this time the doctors gave it a name. Time didn’t stop, it ended. Control appeared again and once more it wasn’t in my hands, it wasn’t in a person’s hands at all, it was in my health. I had everything I had every wanted, someone who loved me and I loved. A home, a real home in the truest meaning of the word. It was ours and it was like our life beautiful, well, in my eyes, as I saw it as it would be, not as it was. Everything was perfect, I had dared to be happy, to have all the things I had never had, and then PRMS.

Birthdays came and went, numbers changed and life went on, but all of it was controlled, controlled badly by something neither of us could do anything about, but despite it all, we learnt to be happy together. Oddly, time didn’t stop when I became housebound, it stopped when on top of that, I became redundant. 50 years old and on the rubbish dump of life. No one would employ me, no one wanted me in any respect. I guess that’s why I wrote the post the other day about being unemployable, it was all part of realising I’m now 55. Those extra five years are like the final seal. But that isn’t where today’s post came from. I was only really stuck at 50 for a year, but it started for an instant, just long enough to flip direction. Everything changed totally and although I was stuck at 51, it was good. I took control and oddly it was the news I had 10 years at the most to live, that changed it.

Every time that time has stopped for me, there has been one common word involved, control. I either gained it, or I lost it. My mind seems to be blocking out things by denying that time is passing and this really is my life, not something I will soon wake up from. In the last four years, I took the most major desition I ever did since I divorced my first husband, I took control of my life. I might be dying, I might not have a long time to live, but it’s my time. I might be housebound, but where else would I possibly want to go, or to be? I might not be able to do anything for myself, but what is there that I need to do, outside what I do? As long as I have Adam, I have all of this entire world that I need and the most blessed happiness. Four years ago, I let time stop, I let it because I don’t need it, I have everything I ever wanted and without time, it can’t end, I won’t let it. This is my time, my last chance to live, it might not seem much of a life to some, but that’s the silly thing about dying, it makes all life beautiful.

Please read my blog from 2 years ago today – 12/04/2014 – Start learning now

I expect we all live in the past from time to time, sometimes it just feels more real than what is happening around us, brighter, more alive and more vibrant, at other is a dark hole that just pulls us back there again and again. For me I suppose it is a little more understandable when your life is the same every day, there is a sort of yearning for something more, something different, not that I am unhappy, please don’t think that it’s just, well I could do with a change occasionally. I tried hard yesterday not to think about my past anymore, I have had enough of questioning everything I thought I knew, the gaps are now exhausting me and I am tying myself in knots over it all. There is a mad rule in life that says, ‘the more you try not to do something, the more you do it’, just like when you were a child and your Mother told you not…..

An important question

Posted on January 11, 2016 by livinginalimitedword

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……

Surely doctors should show some humanity

Posted on November 10, 2015 by livinginalimitedword

I know that many of you were expecting yesterday that I would give an update as to what happened at the hospital, sorry if I disappointed you. Yesterday’s post sort of took over, even though it was started before I went to the hospital, and completed on my return, the break didn’t interrupt the words. It’s hard to fight against something that is so determined to leave my brain. Anyway, to be honest, there isn’t really anything to report. I was back there basically to report back on the success or failure of the nebulizer and steroid inhaler. I am so bad with names, as I am sure the doctor did introduce himself, but I failed as I so often do, to take it in. I have seen him before, it’s a couple of years ago now, but our paths have crossed. My memory of our first meeting had him fixed in my head as one of those doctors who treats you as an idiot, and gets angry when you fight back. Our second meeting, yesterday, was totally different. He was pleasant, rather smiley and even friendly. We discussed the improvements that I had found and my concerns about my oxygen saturation levels. He was more than happy to go over them all and has put my mind at rest over the dramatic and sudden drops that I had come across. He said it is quite normal for such things to happen. Apparently they aren’t totally sure what causes them, it could be something just as simple as a blockage, which when you cough clears, or as my theory put together, a spasm inside my lung. Basically, as long as they come up again, there is nothing to worry about, but should it stick at a low level, then action should be taken.

When I was last there, I had seen on screen that my oxygen levels were settled at 93%, which had matched with the levels I had found on my monitor at home. I hadn’t realised that throughout the time that I was trying to blow into their machine, failing all the time to give them the consistency required, that that machine was also measuring them. That one had actually read the 91% that I discovered at home last week. So the dip I was seeing wasn’t a dip at all. When he told me that, he started going on about machines I might have seen online that would force oxygen into me when I was asleep. I told him I hadn’t, but I had seen them on TV. It was one of those moments that I love when I don’t give doctors the answer they assumed I would. I got the impression, that he thought that I was pushing to have oxygen at home, I wasn’t. Almost everything that he said from that point on was followed with the words, “but as a smoker, you can’t have oxygen at home.” He was watching me closely for some other response than the one he got. I told him quite blankly, “I know that”. He kept on saying it until I told him “stopping smoking isn’t going to help me, I could give up today and my PRMS could stop me breathing tomorrow.” He had to agree with me, as that is the blank truth, but he did try a couple more times. Considering that Dr. Anderson, my consultant, didn’t mention it even once, his persistence, was rather annoying. I believe that Dr Anderson, along with every other Dr I have seen in the past 10 years, understands my position and respects my views on it, for some reason this guy doesn’t. Just as he did last time, he suggested that I saw my Neuro, so once more I went through the futility of doing so, once more he had to agree, but seemed pleased that even though I wasn’t seeing him, I am seeing the MS nurse.

I hadn’t received the answer to my question about the safe levels of oxygen saturation, but it was Adam who asked it again before I had the chance. Apparently, the level to start being concerned about is 88%, but only if it is consistently at that level. He said that confusion is probably the best measure, if I am totally lost and not making sense, then going to the hospital for a short stay where oxygen can be given, is a good idea. He then, of course, had to add in, that during my stay the would keep me away from the cigs, and that I wouldn’t be able to continue on the oxygen at home if I wasn’t off them. I had to keep my cool at that point, as clearly he had a script he worked off daily, it was just my turn to hear it. The one thing he went on to explain partly for me, but I think more for Adam, was that many people can actually continue to live even when their oxygen levels are as low as 70%-75%. As our bodies weaken, we actually become more efficient at picking up on every scrap of oxygen in the places it is most needed. Healthy people; are actually really bad at it; and in effect, actually waste most of the oxygen their lungs take in, but as our lungs weaken and time passes, we learn to be far more smart about not wasting it. The result is that low levels may distress those around us, but our bodies a perfectly happy.

I don’t know why, but I thought that once they were happy that things had settled a little, that that would be it. I sort of had it in my head, that yesterday would be the last time I saw them until I felt that things were changing again, I was wrong. He actually asked me, how long I was happy going it alone, before returning. I wasn’t sure at all as to what I should say, so I simply said, six months maybe a year. He gave a sort of rye smile and said, “let’s make it four months”. I hate it when doctors do things like that, give you the impression that things are going well, then throw you a curve ball, and shattering it. For him to want me back in four months, sort of says he is expecting things to get worse and for me to need their input that quickly. In some ways, I don’t know if there isn’t much of a point, in returning to see them at all. From what he said, that unless I start having, infection, after infection, when they would start me on a long term antibiotic, there isn’t anything they can do for me. The only medical intervention available is oxygen. Something, that I will never get at home as long as I continue to smoke, and as I have no intention of stopping, I won’t get it. He has also put me off going into the hospital for help, even, if I am having really bad problems. Why would I want to go there and be badgered all the time about my smoking? He even gave me the impression that they would be forceful about stopping me while I was there. All he has done is to make me now feel that I am on my own with this one. Despite the fact that they confirm every time that my lungs aren’t in that bad a condition and that it is my PRMS, that is causing my problems, that they are still going to treat me as though my cigarettes are the biggest issue, when they’re not, my PRMS is.

I understand that cigarettes are bad for me. I am not a total idiot. What I don’t understand is, if it is a clear fact, that the damage they have done to me is limited, and it is more than likely, that my PRMS is going to be what kills me, why should I stop smoking? I understand why a doctor would spend their time trying to convince someone, who has a possibility of a good normal life, to stop, that makes sense. How is it a good use of their time, to try and get someone who is chronically ill, dying in front of their eyes, with a highly limited life expectancy, a life that they will spend in pain, to stop? To me, that is not a good use of resources and probably even cruel. Smoking is one of the small enjoyments, that I have spread throughout my day. There are times when I believe that you have to look at the bigger picture. When someone is housebound, living all the time in pain, has limited contact with normal life, and has no possibility what so ever of recovering, to try and take something that they enjoy and doesn’t have the time left to do any greater damage, just doesn’t make any sense. To me, it is as mad as telling someone who has advanced incurable lung cancer, that they can’t enjoy a single glass of wine each day, as it might damage their liver. Clearly, every doctor has to do their job. Doctors who specialise in the care of lungs know that cigarettes, right now, are the biggest danger that lungs face for most people. Being blinkered and persistent in their goal, might be part of being a good doctor, but it also makes you a poor human. There is a point when you have to put your chosen career to one side and let your humanity in.

Right to the end of our consultation, he was still trying, and even started talking as though for some nutty reason, that I was going to come home and actually try to stop. He actually turned around to Adam and said that every cigarette in the house would have to be removed, that anyone, who might bring me any, should be told, that they weren’t allowed to, under any circumstances. I shut him down by saying, “I would just call a taxi and ask them to bring them to me”. He looked dumbfounded, shook his head and said, “I never thought of that one”, then turned to Adam and said “This one will need watching, she’s a sneaky one”. No, she’s not, she’s just a truthful one, she’s not going to give up smoking, no matter what anyone thinks.

Please read my blog from 2 years ago today – 10/11/2013 – The pain fantasy

It happened again last night, I was sat there enjoying the TV and my nightly gin and tonic, then suddenly the pain grabbed my side just as it did the night before and just like then it lasted only a few minutes….

A silent power

Posted on October 17, 2015 by livinginalimitedword

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…..