Tag Archives: Living with a death sentence

Expectations can kill

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I so wish, that for just one day a year, we were allowed to be the person we were before we became ill. It’s not that there is any date ahead of me, that I need to be well for, it’s just there are times when I suddenly become fed-up with being ill. No, I’m not falling into depression, I’ve just got this huge desire to be me. It’s not even as though I want to go out, or do anything special, I just want to be free of pain and maddening sensations, to have a throat that swallows and doesn’t think every now and then, that it would like to try being a second stomach for a change. In fact, I wouldn’t mind, if it were spread out over different days, you know, Monday, I have arms, Tuesday, legs and so on. Being ill all the time, is just so frustrating, and yes, I do understand why many get depression, I’d be a fool if I didn’t. I have to admit, that that is one of the most maddening things to me, that so many people, seem to expect me to be wallowing in self-pity. I remember a couple of years ago, Adam came home from work and told me about a discussion, he had had with his then boss. They had been chatting over a coffee and during the conversation had started in a pitying way, about him being my carer. She was concerned about the pressure of my being housebound on him, especially, as she assumed that I would be both lonely and depressed, in her words “a difficult combination”. She was shocked, when he told her, that I wasn’t either lonely or depressed and that I, in fact, spent my time online, doing what I could to inspire others. Apparently, she was totally overwhelmed and speechless.

People make so many assumptions about what it really means to be chronically ill, and not just busy body managers. I have come across so many people, including those who have just been diagnosed, who make the same assumptions. So many, that I can’t help wondering, if some become depressed, because, it is what is expected of them. I know that sounds odd and I don’t mean in any way, that any of them are putting it on, but our expectations, can often lead us into that reality, somewhat similar to the placibo effect. Almost as though because it’s expected, that we have some sort of permission or order to do whatever it is, and not just depression. I know for a fact, that in my those first few months post diagnosis, I for one, at first rapidly became much, much iller than I had been. I had spent so many years covering up, pretending there was nothing wrong, as that is what the doctors kept telling me, that when I was diagnosed, I suddenly had permission to be ill, and that’s just what I was. Not only did I act and appear worse, I felt it, but I had no reason to, nothing had changed, other than at last, I had a set of names for what was wrong with me. I was living to a set of expectations, ones formed by what I knew about my conditions and what I had over the years, seen in other people. I had to snap myself out of it, if I had managed prediagnosis, I could manage post. It took me quite a while to pull myself round and to just get on with life, as it was, rather than as my expectation of it. I have suffered badly with clinical depression a very long time ago, so deeply that I spent six weeks in the hospital. In some ways, I was lucky, as I had learned from that, the warning signs and what to do about it. Talk and talk and talk. I think my friends and even Adam got a little fed-up with me, as I took any opportunity to talk about myself, and how I was feeling, not the spasms and so on, but the rest of it. It was also back then, that I started working on the smile theory, the more you find to make you smile, the happier you truly become. It doesn’t just work, it’s fun as well, which is something we all need.

If you can control your expectations, you will without a doubt, have a happier life, ill or not. I have worked on that one for so long, that my dreams are no longer that better job, or the bigger house and fancy holidays, my dreams are a day free of spasms in my legs. Yes, I know you read the beginning of this post and assumed that it was a mad notion, but if a day off, is my ultimate dream, my expectations from life, clearly aren’t grandiose. No, I’m not talking about giving up on dreaming, we all need to, but expectations and dreams, should be two very different things. Yesterday for lunch, I had a piece of baked brie, with cranberry sauce and a side order of black pudding, followed by a Mincemeat pie with a dollop of cream. I was in flavour heaven, it was sublime. My expectations are small, my happiness is high, that lunch kept me smiling for hours. Just as I smile daily when I read the tweets of people I’ve made smile, happiness grows and when shared, grows faster. Changing my expectations of life was hard work to begin with, but over the years as my health failed, and reality dawned, that there was no cure and never would be in time for me, I had to adjust my needs of life. There is no greater need than happiness, especially when you’re dying.

I get fed-up at times, frustrated often and occasionally, even a little down, but it never lasts. I have a few very precious things in my life, that mean I’m more than happy to go on living. I have Adam and Teressa, their love is essential and prized greatly. I have everyone on Twitter and those who read my rambling here, what more does anyone need, well other the exceptionally good meal. Those waiting in the wings, waiting to see me crumble and join the majority, can stuff themselves. I have too much to do, to many people who care and need me, to give in and I also, still have my dreams, which include, helping others to stay happy too. Listen to the marketing men, the glossy magazines and the lifestyle media and my life sounds unbearable. Listen to me, the person who’s living it and I’m telling you, no matter what my health has done to me already, or what it will do in the future, as long as I have those few things, I’m happy.

Please read my blog from 2 years ago today – 06/01/2014 – Content in the now

I have at last received a reply from the post office about the fact they keep marking on the envelopes that there was no access that day, not just for one day but the worst was a whole week. Since I have been…..

 

The time to give up

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It’s just a weekend, another one out of a lifetime of weekends. Another day, that’s all life really is one day, followed by another day, yet it’s the thing that we hold onto, like nothing else, it’s our life. To an outsider, to someone who knows nothing about me, they might easily wonder what on earth am I holding on to. Bluntly, “What is there left to hold on for?” That exact wording and feeling behind that question would vary wildly depending on the age of the questioner. To a child, someone who is aged 54 should be dead anyway, they’re too old for there to be a point to their life. I can with ease remember thinking when I was a teenager, that I would be dead by the time I was 21. 21 was horribly old, past it and useless. I had seen Adults who went past that point and their lives seemed so dull, just drudgery. They never seemed to have fun, all they did was work or sit around their houses, surely that was a pointless existence. 21 was a good age to die. It was the age when your body was an adult, but not damaged by wrinkles or the other horrid things that life did to them. At 21 you were still young enough to be a beautiful corpse. Yes, I was an odd child for thinking as far as a corpse, but the rest, no, I knew many who felt that way about growing up.

At the age of 21, I had something that made my age, totally unimportant, I was a mother. My age, what I did, in fact, everything about me, no longer mattered, it was all about her, my perfect little daughter. I had grown up and somehow, I wasn’t old, I was just me. I still couldn’t imagine ever being old, not even 54, nothing to do with my childhood belief that life that old was pointless, but this was me, I was beyond that, I couldn’t grow old. I hadn’t even made it to 21 when I had already made up my mind, that no one should suffer, that we had a right to decide, just how much we could take. That ultimately, we should be allowed to call life to a halt, when we were ready. Having watched my first born fade and die, I understood better than many my age, just what death meant and just what suffering was. I expect, that if I had seen someone with as many things wrong with them as I have now, and who was housebound. I guess, I would have been wondering, “why?”, “Why haven’t they called an end to it? What could they possibly have, to stay on any longer for?”.

Throughout our life, more dependent on what is happening to us, than the true bigger picture, we look at the chronically ill and the dying in different ways. I can understand many might wondering what value, or what purpose my life now has and that doesn’t bother me in the slightest. It is one of those things that I have frequently thought about throughout my life, not just towards myself but to others as well, as what else is pity, other than looking at someone and thinking, what is the point? We pity because what we are seeing is a situation we ourselves couldn’t cope with, or at least believe we couldn’t. So, OK, people can’t see me, but that is probably the bit that makes my situation in life pitiful in the eyes of others, and I get that. I never once remember thinking about what it would truly be like to be housebound, not until I started to see that it was more than likely my future. I freely admit that the whole idea terrified me at first, but not maybe for the instant things that the youngsters out there might think of. They would worry most about the loss of all the social activities, the going to the movies, walking around the shops and spending time with their friends. I feared losing my job and not being able to pay the mortgage, that was my first fear and it terrified me. In fact, that was my very first thought when I first had it suggested that my MRI scan meant that I had MS. Not about the shortened life, the pain or anything to do with my health at all, it was all about how I was going to keep working.

I had been brought up to believe that we all had to do our bit in society, have a job, pay our taxes and generally do the things that keep the world’s markets ticking over. Sitting at home, wasn’t acceptable unless you had a child, then your full-time job was being a Mum, otherwise, you had to work. I know not everyone will totally agree with all of that, but the majority will agree with the first bit, you have to have a job, if you don’t, well your sponging off the state. The tax paying majority are pretty unforgiving, unless, they know someone who is a genuine case, but still, some aren’t convinced about the rest of us. I’m not sure what the exact split would be, but there are clear sectors. Those who pity, those who care, those who doubt and those who can’t see the point of us at all. I remember hearing someone, a long time before I was truly sick, saying to someone else, something along the lines of “Wouldn’t they be better off dead?”, they were talking about someone in a wheelchair. It stuck in my mind because it shocked me, I had never heard, or even come across, anyone, who thought that way before and I couldn’t believe, that anyone could. I was young, I know better now. Something on TV the other day brought it back and it triggered a run of thoughts, hence this post.

How we measure what is a good life, changes throughout our lives, from our teenage years on. As I said, I can easily see an outsider wondering what I am holding on for. It’s not as though there is a nice little equation that says this is a life worth living or not. No sliding scale or even anything to measure it against, other than our own personal experiences. Just as our viewpoint on other people’s lives changes, so does ours on our own, but when it comes to our own, it is far more subtle. It doesn’t matter what happens to us, we have a drive inside us to keep going. Long-term readers will know that there have been times in my life, where I lost sight of that drive totally, then, life wasn’t ready to give up on me, hence why I’m still here. Nearly 15 years ago, at a time when I thought my future had never been brighter, I was handed a death sentence and another just over 2 years ago. It is the oddest thing being told that life is giving up on you, and the ultimate proof it is the most contrary thing that exists. We might think that we are in control of it, or at the very least that we can take control of it, but we can’t. We might think that if we were to lose our health, but locked inside our homes that time would drag and all point would be lost, but it isn’t. It doesn’t matter where we are in life, what we have or what we don’t have, life will go on as long as it wants to and as long as we have someone we love, someone we can’t bear to be without, we will hold it tightly.

I still believe what I thought when I was 21, that no one should suffer and that we should have the final say, but once you are here, in that pain and at times suffering, we still have much to live for. Living with a ticking clock, having to swallow handfuls of drugs just to get through the next few hours, isn’t the worst thing that can ever happen to you. Oddly, just like the rest of life, there is much to learn, much to enjoy and much that means I still greet the new day with a smile. None of us can judge the life of another. None of us have the right or the knowledge to do such a thing. Both of those statements work both ways, only I have the right to judge my life and only I have the knowledge with which to do so. It’s not that I don’t want to tell you, or that it is a secret of some sort, it’s that I can’t. I could give you a list as long as my arm, at the top of which without a doubt would be Adam, but even my entire list, wouldn’t explain it. Ultimately, I don’t feel any different about living than I did 15 years ago, before they had even told me, I was in it’s closing phases. Even now, the truest thing I have ever heard said is “Life is what we make of it”.

 

Please read my blog from 2 years ago today – 29/11/2013 – One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the …..

 

 

 

A silent power

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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…..

The point of strength

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For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

The start of an idea

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The shadow of the night before hung over much of yesterday, but I was determined to shake free of it and move forwards again. You can’t make yourself breath in a different way when either asleep or going to sleep, but you can when you’re awake. Well, some of the time. I tried to make a conscious effort to take more air in whenever I could, or whenever I felt I was slipping slightly. It’s one of those things that the I just can’t say if it worked or if it didn’t. You can’t measure what didn’t happen, without know if it would have if you didn’t intervene. What I do know is that the morning was harder than the afternoon, but in the morning I am busier and distraction is equal to sleep, you forget to do things. I did have total failures, spells where I was clearly on the edge just as I was the day before, caught in the feeling that here wasn’t where I was supposed to be. But just like yesterday they passed, did breathing deeper make a difference, who knows. Just taking more air into lungs sounds so simple, but when you have those tight bands around you, it’s a true struggle. We are all programmed into not causing ourselves pain, I don’t need to even try taking a deep breath, I know what it does, it hurts. Pushing against that isn’t easy, but I can take in more air than I would if I didn’t try. It appears that I have fallen into a pattern of underestimating the amount I can stretch those bands before they trigger true pain. The only problem is it takes concentration, any distraction, even the tiniest and I fall back into normality.

After my bad nights sleep, I fell into a deep sleep within seconds of lying down for my afternoon nap, just as I did when I went to bed last night. The bad part is both had something in common, I woke with a terrible headache. In fact, I still have the one from last night, something I have often had in the past month when I wake. If this was the first spell of nightmares/hallucinations, then I would be far more worried by this than I am, but it’s not. I have just four weeks until I see the consultant and unless something dramatically worse happens before then, I am sure that I can wait. My lungs do have a slight wheeze to them in the last few days and yes, I have been short of breath just moving around. Again, though, I have had many spells of that in the past few year, so it’s not exactly something to start sounding alarm bells over.

I still find it incredibly hard to know when, or when not, to start getting worried about the things that I live with, or even if there is any point in worrying about any of it. I always find myself caught in two minds about making a fuss about things. I know that I am far from the illest person out there, but I don’t know when compared to those in my peer group what is counted as a medical emergency. To me, a medical emergency is something that means you go to the hospital because they can do something about it. Like a heart attack, where they can get your heart going again, possibly do an operation to stop it happening again and you carry on with an improved quality of life and also an improved longevity compared to doing nothing. I don’t feel that I ever fall into those categories. When you are living with a series of conditions that interlink to make life hellish, all that no one can do anything about, where is that emergency point. A mild rise in one symptom isn’t an emergency if I hadn’t had that, let us call it a dream for now, if I hadn’t had that dream and those feelings. I wouldn’t have mentioned it at all. Shortness of breath and pain are everyday events. Feeling fuzzy, light-headed and waking with headaches are everyday events. There is no emergency. Even the fear that my brain isn’t getting enough oxygen all of the time isn’t an emergency, it’s a fear, one I have had for a while and I am still here and still myself.

The doctors can’t fix me, there is no operations, no medicine, and no treatment. Yes, if it’s proved to be a lack of oxygen, they can do something about that, but I doubt they want me in A&E when I have an appointment in a couple of weeks. There are so many isolated events and symptoms that I and others live with, that at the time feel like the end, but never are. Which ones are the real problems, the real emergencies? There is also one other factor that I am sure every single one of us who are caught in this progressive illness nightmare struggles with, is there really a point in running to the doctor every few minutes. The ticking clock in the background of my life isn’t ticking any slower. I know that this is going to sound wrong but is there a point in running back and forward trying to make it longer? I know that my prognosis isn’t pretty, I have always known that. When you get as far along the path as I have, the questions about the end of that path start to grow louder. I like most, have no desire for a long slow painful end. One where I would need to be nursed through every day, is something I don’t want. I always had this view of my life as being that person who worked right through to my last hours. Just like my grandfather did, he collapsed at work and died within a week. That to me is the way to go, not lying in bed for months maybe years. Sometimes the idea of totally losing my mind or a bout of pneumonia sounds like a gift.

As I said, I knew that would sound wrong and it does. I don’t want to die today or even tomorrow, I want to live, but the idea of a life that is out of my control holds none of the things that I see as living. It’s so wrong that the biggest thing ahead of me is totally our of my control. I know I still have a long time ahead of me in which to work this all out, but it’s something that plays on my mind. I don’t even know where to turn to get any of those answers I am looking for. I don’t even know what help and support is out there for when things get to the point where life is truly tough and truly heading off where I don’t want it to go. How do you plan the rest of your life when so much of it is already written and you can’t actually change that? What help and support is even out there to turn to? My experience so far is that there is really very little, and that was the experience of someone who was still reasonably fit and healthy. Housebound is a major barrier to getting help, as oddly all the help that I ever found set up for those who have a chronic illness, requires you to go to them. What when you can’t financially afford to get there? Or when you physically can’t manage to get to them? Well, so far that has come back with a brick wall. The answer, even from those who should know better, is if you can’t come to us, well we can’t help. Being a none driver and living like most on a budget, has meant that on many occasions long before I was housebound but was in a wheelchair, the little help that was out there, was out of my reach. Now being housebound means there is even less than there was before. It appears that care and support are more a question of what you can do for yourself, when it should be what we need from them.

So far I come up with only one thing that seems to be for sure, there is no right or wrong answer to any of it. You are the only person there is to pursue and seek out what little support there is and even then, you are mostly on your own. How do you find out the options on your care when your health is beyond what you can do for yourself? Who do you turn to when you need to start planning and preparing for what lies ahead of all of us? If you want to plan your will or even your funeral, you can do that with ease and no one bats and eyelid or thinks it’s strange. But if you want to start planning your death and your care for the months and years before, suddenly you are some kind of alien. I don’t want to leave it down to chance. I don’t want it to be that sudden horrid monster that appears and you are suddenly at the mercy of the system. I want to know what might happen in all the variables that lie ahead of me and just what they are. It might sound like a huge demand or even a morbid one to some, but I don’t really have a life to plan for. I have already done that. I just want to plan what comes after so that I am not faced with a nightmare that’s out of my control.

Please read my blog from 2 years ago – 04/08/2013 – 1 hour is changing my life 

Sometimes it take something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me………