Tag Archives: Building a new life

Time for a new life

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I’ve done it a million times before, well, it feels like that anyway, so I can do it again. I never thought that my life would turn at this speed, but it has, so all I can do is piece it back together and force my control on to it. So where do you start? What do you do first? How do you work out what it’s even going to look like? Well, you don’t do any of those things, not one of them. I know that sounds a bit nuts, how can you put your life back together, if you don’t even start trying? To me, that is the mistake too many people make, they try, they choose a point and they say “From here on in, it’s going to be different.” The truth is, it just doesn’t work that way.

Every time my body has destroyed me, the only way out of it, is to let it sort itself. There is no miraculous formula that sorts life, life has to sort itself, but we can help, we can put in place the structure and then let it grow. It’s a bit like caring for a climbing plant, you have to put the framework in place and then coax it to grow and cover it. What you do have to do, is identify the elements that will form that framework. For me, organisation has to be at the base of all of it. In little pieces, I have mentioned what is needed in the past few posts, but it’s all sort of muddled up and scattered all over the place, which is why I am still in a mess. My thoughts have been so wild and so all over the place, that I have been left no better off from writing them. Usually, when I write, it helps me to make sense of how I feel and what is happening, but it hasn’t been working lately, because of the speed that all the changes have been flying at me and because the rest of my life was all over the place.

So, organisation, you could ask that is my asking to the “where do I start?” question, I’m not. It’s a question that doesn’t need asking or answering, as it has already started. The instance my mind said “Enough is enough”, it began. All I am doing now is agreeing, and making sense of all those fragments that have been flying around in my head and appearing in this blog. I started my organising when I cleaned out my draws and bought new clothes to fill them. Clothes that were long overdue, as I have been wearing the same two pair of pyjamas or the two nightgowns and two dressing gowns for the last 5 years. Suddenly, I now have 6 pairs of trousers (all stretchy and comfortable to sit in), 5 long tops (all that cover me down past my hips, to be sure the bulges of towels can’t be seen), 12 pairs of sensible knickers( I used to so love my G-strings), 5 bra tops (not bras, they have hooks, these just pull on and off), six pairs of socks (toe to knee tight to prevent DVT) and two long flowing jersey cardigans, to cover up and hide any mistakes. Not one has a button, zipper or a catch, just easy access and exit designs, so I can dress alone, slowly, but alone. I haven’t had such a selection to choose from for far too long. In an odd way, they have been both the start of change and part of the problem in one, as I added something that makes life harder, I now have “choice” to deal with as well. That done, I cleared the wardrobe and created a home for all incontinence products, now piled up high and stored out of sight, but still reachable for both myself and the nurses. Both my bedroom and I, still managing to look anything but, hospital and patient. I have done everything that I can to preserve the “me” that was formed years ago, but accepting that I am no longer physically the person I once was, I’m modified if you like, but no more.

With my bedroom and my body now looking as normal as I can achieve, but with the allowances that have been forced on me, that leaves me free to sort out how I’m going to live. To live, I must have energy, something I have fought to work with for years, but I am now failing to manage as I once did. Energy is at the base of everything, without it, I am no more than a zombie who exists and that I idea, I quite simply can’t accept. Getting the balance between what I am supposed to do, to control both my bladder and my bowels and the amount of loss of control I can accept is a huge problem. I don’t have the energy to be going back and forwards to the loo every hour, nor do I have it to spend going to and fro to the kitchen, constantly collecting cold drinks. Yesterday online I bought a mini fridge, it is now sat in the living room, just one steps from my computer. Every morning, it will be stocked with bottles filled with my drinks, plus some cold water and a glass to take my potassium tablets with. There is a small shelf at the top, where once I have had my breakfast and morning meds, I can prepare lunch and it can sit there waiting for me. On normal days, this should be enough to limit my need to run around, other than going to the loo.

It may be the first day of the fridge being sat here, but it is already making a difference. Firstly, because I no longer sit nursing the last inch of fluid, as I have no energy to fetch more. I can now drink freely, something that will hopefully help with my bowels. In the past, my fluid intake has been greater in the evening when Adam fetches my drinks, now it should be constant, tapering off at night, so my bladder isn’t so full before I go to bed. Three things cured by buying one gizmo. I refused today to have another supplied by the NHS, the district nurse offered me a commode, I’m not ready for that step yet. Admittedly, it would remove the other issue, but then would come the emptying and I can’t ask Adam to do that before there is no other option.

I have also sourced foods that I like and can be prepared either by me or by Adam on the two days that just now I need his help. On Mondays and Thursdays when the district nurses are here, I use up so much extra energy with the whole process of the enema and the extra trips back and forwards. I am hoping that in the process of the next couple of weeks, that I will become more organised and that I will get it all working smoothly. So here is my framework. I’m fed, clothed, watered and rested as much as possible. Today, I have brought all the pieces together, I have the roots of my new life in place, from here, hopefully, the rest will grow and life will become easier, not just for me, but for Adam as well.

 

Please read my blog from 2 years ago today – 15/07/2014 – Passing the night

I used to get a magical half hour when I first woke up, I always thought it was partly because I take time to wake up, that my nerves didn’t react the same after lying partially dormant for so many hours, but I would be able to get up, go to the loo, fetch my glass of coke and come through here without pain. Even when I sat down I couldn’t feel burning, or pins and needles, just a strange fuzz, as though I was……

Rewriting life

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I dissolved into a total mess. The tears were not running, but pouring and I had no way of stopping them. I think that it was just something that I needed to do, that point had been crossed and everything had become too much. I didn’t just cry for a few minutes, I cried right through the day whenever anyone spoke to me. The district nurse was the first to see just how screwed up and exhausted I really was. It goes to say that I chose not to have the enema, not just because I was whacked but I was also very aware that my body didn’t have a need for it. If this week is anything to go by, I think twice a week is more than enough, which is exactly, if you remember, what I thought before we even started. We all know our own bodies and I probably better than a lot.

Next, it was Adam. Yes, I know he is the last person who deserves my letting rip, but he phoned to say he wasn’t coming home at lunchtime and that triggered the tears. For once, I really needed his help. I quite simply didn’t have it in me, to prepare and ferry my lunch, meds and so on, back and forward. He set off for the house straight away. He hadn’t really had a reason for not coming down the road, just a case of him feeling lazy, so I didn’t feel too bad about saying “I need you”. As normal, he was only home for twenty minutes, but it was long enough for his legs to do the work, instead of my arms. Having a wheelchair doesn’t make things any less exhausting than having to use your legs. If and when I get the electric one, well that will be a different story, something he totally agrees with. He hadn’t been in the door for more than a handful of seconds when my tears and his reassurance flowed, both deeply needed. As time goes on, my need for his love and his arms around me, are growing.

From my previous post, it must have been clear to all that we desperately need to change the way things are done daily. The tears, well they were just the final sign that I’m not coping and that all the change that has happened in the last few weeks, is getting to me, I can’t help but feel the real issue is organisation. My energy levels are being stripped daily because I am being forced into trying to do far more than I can. Yes, all of the people suddenly involved in my life, are here to help, but their impact on me has to be changed. Tonight, we are going to start by clearing out my wardrobe, this will supply me with space for all the inconstancy pads, wipes and so on that keep arriving. That will remove one pressure on me. It might be silly, but I really get embarrassed by the fact that they can be seen, yes, it is only by myself and Adam, but that is bad enough. The nurses left another pack of towels on the living room coffee table earlier and I hadn’t had the energy to move them and hide them. With no space in the wardrobe, they are slowly piling up on top of a lot of junk and I can’t see what is what. This morning, they all fell out onto the floor, more work, more energy being used that I just didn’t have. So tonight, we are going to sort that one, it may sound small, but it’s all the small things that have mounted up.

While we are sorting the wardrobe, we also plan to talk about my meals and see if we can work out menus that I enjoy and Adam can prepare, which might be the difficult bit. Adam isn’t exactly a cordon bleu chef, his cooking skills are somewhat basic, but that’s the food he likes. His idea of a good meal is a fish finger sandwich with salad cream, I wouldn’t even feed that to a dog, but we all have our own likes and dislikes. We need to come up with a mixture of things, either that Adam can prepare and I just take out of the fridge and eat, or he can come home and throw in the oven or microwave, that takes minutes to cook. There is also the issue that has been caused by my latest tablet. The potassium bicarbonate tablets, have to be dissolved and taken with or after food. The very first ones showed me they have to be with, as I landed up with heartburn. The first problem is the glass of cold water. We have removed the back and forward to the sink and cupboard issue, by putting a bottle of water in the fridge and a glass that will now live on the counter, but that doesn’t get it into the living room where I eat. Transporting a glass and my food in my wheelchair is just as hard as it sounds. To get around it yesterday, I prepared a snack to follow my meal, but that’s still more work and more energy, not mention more calories that I don’t need. Nor am I sure that I really want to finish every meal I eat, with cod’s roe and cream cheese, despite the fact I totally love it. Such a tiny thing has turned into such a huge issue. There just has to be a better answer.

For me to live, to feel as well as I can, I must move as little as I can. It is that simple, but achieving it is incredibly hard. None of us know just how much we move around until we are faced with looking at our every action. I used to have it down to a fine art. I used to be able to bunch up every trip that I took, to include as many things as possible, without retracing my steps, unless totally unavoidable. Add an enema, add a new tablet, add answering the doorbell, add letting people in and out, then do it all more than once in any day and all that planning, all that precision leaves more swiftly than you can imagine. Just how do I get it all back, as I want to live again, not spend the hours I’m awake feeling half dead.

 

Please read my blog from 2 years ago today – 08/07/2014 – Letting go

I lost just over an hour of my morning today and all because of two things, the TV and Adam. It is normal that Adam switches the TV on while I come up here and get settled for the day, but this morning although it all seemed to come on, nothing appeared on the screen other than blank blue. We talked about the possibilities and Adam carried out a couple of checks, but nothing happened, we even….

Category unknown

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I didn’t expect it to happen, but yesterday actually worked out far better than I could have expected. So, OK, I was beating myself up for the first half of it, but once I got past the point of not being able to function, because of the clock. I actually made it work. Lunchtime arrived as always, just after 1 pm, despite the fact, I started my day a whole hour later than usual. I made it, to the right point in my day, at exactly the right time. It actually felt really good, something I had planned out, thought about and pondered over, worked first time. No, my energy levels weren’t suddenly boosted, but that would have been expecting just a little too much. That I know is going to take time, hopefully, not as long as it took to reach permanent exhaustion, but time. The real test will be when we reach next Saturday, will I have managed to get that so longed for extra sleep, and will Adam have managed to get out of the house on time daily, without me sitting in the background reminding him the clock is ticking?

I know that it’s a huge hope, but if I can make the new system work for us both, I actually think it should change a lot more than just sleep. When you spend your entire time tired, worn out to the point that you no longer really function as a person, more existing as an automaton, just going through the motions, well, you become lost. If I am honest, I have been lost for a very long time now. There have been glimpses of me, the odd flash here and there, but the rest has been more like living as a shadow. Illness does that to you, it doesn’t just steal your health, it steals everything about you. I know I am never going to be the bright, active, bubbly person I once was. I’m never going to stick on a CD and dancing until I drop, as I’d drop on the third beat, which would kind of defeat the purpose and also be cheating. All I want is to be able to put life back into my voice and my mind. Sometimes, it can truly feel as though I am no longer me, but that, I have worked out, is a state of mind, more than a fact.

All of us have this image, this montage of all our best bits, we are seeing what is actually a mythical creature that never existed, but we tell ourselves, that is us, and it’s who we were and should be forever. Pick away at the edges, and all its component parts, start to fall apart. They belong to different ages, different phases of our life, they were never, all there at any one single time. I want to be somewhere in my 30’s again, with the perfect unmarked body I had when I was 16, but with the tone and energy I when I was a DJ. I want the hair, I had when I was 34, the zest for life I found when I was 28, and the innocence I still had when I was 18 and every speck of knowledge that I have right now. The talents that were stifled when I was in my 20’s and so much more that it would take my hours to list. None of them, all ever belonged in the same time, she is my mythical creature, who never existed and therefore, there is no way, she can ever exist again. So that voice inside me, that is still screaming, “I want to be me”, is asking for more than the impossible, as in many ways, I don’t even know now, who I am. The last 14 years of my life, have been so locked up in my health, that me, is someone I don’t really know, I just don’t want to be her. “My life was never meant to be this way”, I guess, ill or healthy we all say that, silently inside to ourselves. When Adam and I first married, we had such plans, our lives were going to be so good. This was supposed to be our first home, the place where we set out together, learned how to put together a home and then to sell it, and moved on to bigger and better places to live. We had our lives, everything worked out, right through to that cottage in Arran, the place that would be our final home, an early retirment together. It didn’t work that way. Two room plus utilities, our first and our only ever home. I suppose, we all once thought we would be superstars, bright lights that would burn a trail, taking with us and leaving behind us, nothing but happiness to those who follow. Not sat in a wheelchair, locked inside a home that we love, but would do anything to be able to leave. I have long since given up the wish to be well, to be fit and healthy. I’ve accepted what has happened, and that it can’t be changed, but is it really too much to ask, just to have a little more life, in my life.

I try hard not to dwell, on what I didn’t have time to do, before the door closed, or the plans I once thought, would come to fruition within them. Looking backwards is a trial, one that should be avoided, unless it’s on only the happiest of days. Those days, which regardless of health, would always have shone, the ones that make me smile and always make me happy. Forwards became the only direction I would let my legs, and now my wheels to take me, but some way along that path, I feel I got lost. I am more than someone to be fed with tablets, kept topped up with fluids and occasionally fed. I know I’m a person, but who, I’m no longer sure. I once had so many tags that spoke of me, words that I happily used to describe me, but most have now fallen off, dropped along the way and thanks to my health, I can’t reach to pick up again. That’s what chronic illness does, it steals, it strips away and shreds our lives into such fine pieces, that we can’t put them back together, leaving us only questions, always without answers. We can rebuild, put together a new life, over and over again, but it is only a matter of time, before, it’s all shredded once more. Each rebuild gets harder, each has fewer pieces, as we don’t want to make those mistakes again. We have to build within our strength, within our diminished energy levels and our dwindling abilities. No matter what we do, we find ourselves back here again, asking the same questions and desperately seeking for who we are and what we’re good for.

As long as there is a smile, that glimmer of happiness, we know there is a purpose, a reason that we keep trying to live. Maybe, we shouldn’t be asking or searching for who we were, rather who we are. Maybe, there is more than one reason, why, we can’t make our mythical creatures live. Maybe, we just need to accept who we are, like that person or not, it’s the only one we have, the only option open to us now, as all others, have been taken away. I’m not mythical, I’m human, and a sick one at that, but I can’t change that, this is what life dealt for me. God, I wish I had learned to play cards.

 

Please read my blog from 2 years ago today – 21/12/2013 – Amputation hurts

I seem to be having trouble with sitting again this morning, there just isn’t a position that will let me sit for any great length of time. It is always the simplest things that seem to make life difficult or uncomfortable……

 

 

 

 

 

Every solution breeds a problem

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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…..

Shifting the focus

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There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual who reads far more into things than were ever intended, you know the person who would take a comment and run a million miles with it, re reading and re assessing what was behind it. So much so that I would worry about it well into the night, going over each word searching for what they meant by it or what I should have said in reply. I lost count how many times I worried because of some comment made by my boss trying to work out the meaning behind it, when in fact it had no meaning at all and was never mentioned again. I know there are a lot of people out there just like me, we seem to have been born with this need to keep the world on the happy side and are convinced that everything always came back to us, it was our fault when others didn’t understand, or our fault when something silly went wrong and it was our job to fix it all. Yesterday I noticed for the first time that I haven’t felt like that for a really long time.

It is difficult to explain to those who haven’t had their lives turned upside down, that as time goes on you start to find more and more pluses that actually make when brought together, the reasons for why they begin to feel happy in their new lives. I know without having to think to hard about it, that things actually began to improve for me when I was forced to stop going into the office daily, or actually at all, that many of the smaller symptoms started to disappear and some of the more major ones to lesson, those improvements even included learning to eat again and eventually getting rid of my feeding tube. I honestly think that we under estimate hugely the effects of living in our modern world actually put upon us. All of us need to earn a living to be part of the working world, we all want our own homes and to keep them decorated and clean, on top of that we have relationships and families, we pile on more and more and it just keeps piling up. For me, unpicking all those pile at first, brought about huge changes that were incredibly positive in it’s effects. Getting rid of the sleepless night, the brain never being allowed to be free of worry and problems, or the body never allowed to rest, changed everything. It wasn’t my choice to be housebound, but in the first two or three years I really did improve in my health, not just physically but mentally, my life became living again. As long as I kept everything on the level, simple and unchanging I remained as close to well as I had done in years. Most importantly I learned how to deal with even the minor stress of daily life, I didn’t get in a strop just because I couldn’t open a bottle of coke, I worked on it, not swore at it. Somewhere in that time I stopped blaming myself for the problems of the world and I became unstressed and happy with the way life was. I had found happiness in a place I never thought anyone could and why I continually tell people that being housebound is far from the worst thing that can happen to anyone. It is really like living in a different world as you are in a peaceful place, free from the things that actually were pulling you down, making your health worse than it really was.

I know for a fact that I my health improved, just as it did when I had the chemotherapy, step by step I got better, not well enough to go and try it all again and in honesty I didn’t want to take the risk. I was better, I had more energy, less pain and a feeling of living not existing, that last one was by far the most important. Everything stayed steady but the improvements came to an end, steady was good, steady was something I could accept but over the last few months I know without the slightest doubt that in the last year the downwards slope has returned. I can track it because it is so clear, this isn’t anything to do with the weather, as well it is all the time not just for a short while then settling again. I haven’t managed to write a single post with any fluidity for over 3 months, nothing is easy to do that requires my brain, even talking to people is getting harder and harder. Jake came here yesterday, usually we would spend a couple of hours just talking about rubbish, but yesterday he was here for less and 30 mins, he asked if I wanted him to go as I was clearly exhausted and he could see it without any doubt. Everything has become a struggle no matter how simple or everyday it would be to others, to me it is now really hard. If you don’t see it, well jump back several months in what I write and look for yourself, it’s all there.

I push myself everyday now just to write and I push for the number of words as that way, well that way at least I know how long I should be writing for and in what length of time. The time stretches and stretches, not long ago 5000 words was a quick 30 to 40 mins, so far today this has taken nearly 2 hours. I can’t write for many reasons, but the daftest and most annoying is my fingers no longer hit the keys they are supposed to and correcting my spelling would drive anyone mad. Less than a year ago I slept like anyone else with an hour long nap in the afternoon, now I sleep more than anything else, 13 hours plus is the norm. Talking now is madness and I know already that even Adam can find it to much to deal with as I just don’t make sense, the thought processes just don’t work and although writing is easier, well I am loosing that at times as well. I just forget what I am saying and what I have already said, reading back all the time to find I have already written what I was about to write is a common situation.

I have been so focused on my lungs, understandably I suppose, that I just haven’t been keep an eye on what my MS has been up to. In the last week or so I started to pay attention, but I wasn’t looking at the detail, just skimming over the obvious signs. I don’t know if it was Jake being here or something that has been trying to get me to think for a while but yesterday, well it woke me up and made me not just drop in the odd comment, but I had to pay attention and I had to really think about just what is happening. Even though I know my health has changed massively and the shift is clearly downwards, I still have that wonderful feeling of happiness, as despite what my body is doing I have managed to hold on to that peacefulness, the only pressure on me, now comes from me alone and I know that now without a doubt. 6000+ words, an over run I know but I have to start refocusing on what is happening, nearly 3 hours and very much time to move on.