Step by step

Posted on May 29, 2016 by livinginalimitedword

Taking time out from blogging is starting to open up my life again. There has been a list of things waiting to be done, that I just didn’t have the energy to do. The other day, I started work again on what now feels like a long ago dreamed up list of the things that I need to know to put my mind at rest, when it comes to the subject, of my future. The other week I had broached the subject with Adam, about getting in contact with Social Services in regard as to what help they can and can’t give us. I did write about it, but it took a second discussion and my finding both the email address and phone number, before Adam contact them, at the beginning of this last week. Several phone calls later, and we have managed to arrange for someone, to come here and talk to us. Someone will be coming out to see us, at the end of next week, which just proves what I suspected, nothing happens as quickly as we want. If we had waited until it was to us an emergency situation, we would have been struggling for weeks. The next on the list, well it was, of course, sorting out the issues with the grave that I thought I owned in Aberdeen. Somehow, when my son died, the documents for the actual plot, landed up in my ex-husband’s name. To my surprise and delight, when my daughter took the documents to him, he too was shocked and signed all the papers needed, for the name change to take place. The next step would be really simple for most, but not for me. I had to make a phone call. This time, I knew that it had to be something that I did, and not something I could hand over to Adam.

Despite all of the undeniable facts, that I am heading rapidly in a downwards direction, Adam is still finding doing anything that is connected to my death, extremely hard to deal with. I didn’t need to talk to him about that fact, so I knew that regardless how I hate the phone, I had to make this call. I have to admit, that it wasn’t just this dragging exhaustion, that was stopping me, but also the fact that I somehow had to talk to a stranger, and worse still, one I couldn’t see. Without a doubt, it had to be done on a good day, even then, I knew that I was going to have to work up to the point, when I could actually lift the receiver, and dial the number. I tried a couple of times last week but just couldn’t do it. I just knew they were days when things weren’t as good as they should be, so I waited. I know that might sound pathetic to many of you, but it really is something that is that difficult, for me to do. I eventually managed it on Wednesday afternoon. It lasted no more than five minutes, but I was so glad to hang up and take a breath equal to the one I took before I committed myself to action. They hadn’t mentioned it when I phoned to get the forms, a conversation that found me in tears within seconds of saying “Hello”, but still I wasn’t that surprised to discover there would be a charge of £34 to redo the documents. I actually made it right through the call without a single tear, just a lot of stuttering. I actually can’t remember when I last wrote a cheque, but fortunately, I had had the foresight to put my chequebook where I could and can still see it. Which proves I do have a brain occasionally.

Adam took all the paperwork with him when he went to work, so he could post it for me. That evening, when we were just sat watching TV, he turned around to me and said, “I was thinking when I was at the post office, how weird life is. Just 16 years ago, we were happily living in our first flat together, and there I was posting off documents that referred to your funeral. How has this happened? No one should be arranging their wife’s funeral while she is still very alive.” I thought for one horrible moment that he was unhappy about what I was doing, but it turned out that it wasn’t that close, it was more a case of no matter when it just wasn’t right. As I said to him, though, you just need to watch the TV adverts to see that these days, people are planning and paying for their own funeral all the time, it is becoming more the norm, just as it should be.

Quite rightly, both of us actually still find it a hard subject to talk about freely. We do when circumstance brings the subject up, but it’s not a regular topic of conversation. Like most things, though, the more we do, the easier it seems to get. but no one wants to think about the actual event and all the stuff that surrounds it, it still feels a little like talking about it, means that we want it to happen, which of course, we don’t. I know that when I sit here writing about it, it does read as though I am totally at ease with all of it. I am no more at ease with it, than you are about your own death, it’s just I am the type of person who wants to remove all the added stresses of my death, from Adam. I will never remove the pain he will feel, but if I can make the rest easier for him, then I will. Death is a fact, and it does have to be discussed and I clearly believe that things have to be organised and arranged in advance. If I hadn’t started looking into it a couple of months ago, we wouldn’t have had a single clue, that my son’s grave was in my ex’s name. If that hadn’t been discovered until after I died, it would have caused huge issues. Once I have the documents all correct and legal to use, the next step is to once again, contact the funeral directors, and get it all signed and sealed ready for the date it will be needed.

There is for me a strange comfort in getting all of this organised now. I’m not looking forward to the meeting with Social Services, but it has to be done. We both need to know what they can and can’t do for us, and even just getting the first contact in place, so when things get worse, they are there, no hassle, no assessments, just hopefully a phone call and life will go on. Once that one is done, the next and final one on my list is to contact the hospice here in Glasgow and talk to them about their possible role in my life. Thing are moving slowly, but they are now moving.

Please read my blog from 2 years ago today – 29/05/2014 – Out of Control

Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse-remitting MS and of no use to me at all. Sometimes it nice……

The talking has begun

Posted on January 18, 2016 by livinginalimitedword

Adam read my blog yesterday, “The first tiny steps“. I knew there would be a reaction, which I admit was part of my reason for writing it. Like a lot of people, he doesn’t like talking about death, especially, not mine. I hoped that by writing my thoughts, that he would then have something that was a defined plan, rather than just the general subject. It didn’t quite work out that way. It still took a huge amount of pushing and prodding to get him to say anything at all, and what he did, was, at first, running around the edges. I fully understand how he feels, it is hard, extremely hard to break ourselves away from the pain that death brings with it. I also understand that there is a huge difference between sitting calmly writing about something and talking about it. I had taken the easy option, as a way of broaching a difficult subject, which I had tried and tried in the past to do, I honestly couldn’t think of another way I could get him to talk. In the past when I have tried to talk to him, he has run away or, become so agitated by it, that I have backed off, as I can’t stand causing him pain.

When you yourself know you are dying, even if it is going to be several years away, you can’t ignore it, and this time, I wasn’t going to let him. I knew from the past, that he doesn’t like the idea of my ashes being so far away, if, they were all placed with Jeffery. I get that and I didn’t like it either, but I made a promise the day I buried him, that I would be with him one day. So I made the compromise, part with Jeffery and part close to Adam, to my surprise, he didn’t like the idea of me being split in different places either. We talked but, he couldn’t, or wouldn’t say what he wanted, all along when we came to a block, he said the same thing, “It’s not about what I want that matters, it’s about what you want.” I personally think that is wrong. We have done everything major in our life together through compromise and agreement, I don’t see why this should be anything different. What happens to my body once I am dead, is actually very much about what he is happy to live with too. Grieving has to have the right steps, it has to be worked through with an opportunity to say goodbye and to know where the person you love, is physically. Just as Jeffery was buried, because I couldn’t accept there would be nothing following a cremation, Adam has to be comfortable with what happens to me. I won’t be, the person who is grieving, he will.

At first, he wasn’t comfortable that I didn’t want, if, you like, the traditional funeral style goodbye. The removal of the ceremonial part isn’t as strange as he thinks. To me, the ceremonial part, is, when my ashes are scattered, as that is truly our final goodbye, not sitting staring a coffin through tears. When Jeffery was buried, we didn’t have a service in a church first, we all gathered at the cemetery around his grave and we held the service there. It was simple, and just as moving and supplied all the closure anyone could ask for. There was something about being outside, that felt right as well, as though there were no restrictions, no confinement to our feelings, they were as free as his soul was. I also think that the traditional cremation, being in two parts, separated by days, is cruel. I see the cremation act, as nothing more than a preparation step. It is far less arduous, to have just one gathering, one point when everyone can come together, to perform the final, single act to my life, or anyone’s life who is being cremated, the scattering of their ashes. He also tried to argue, that it was what people would expect and all those who know me could come to the crematorium. It’s an argument that doesn’t stand up, firstly all who know me or want to be there to support Adam can come to the ashes being spread, but not many will be there from my side anyway. He tried to say there would be, but as I said, who is there? Teressa and her husband John, my friend Jake and Adams family, that’s it. I have no friends left, they all vanished when I became ill, for some reason, that bothers him, more than it does me.

He didn’t like either that I intend to keep the whole thing as budget friendly as I can, he said it was something that I shouldn’t worry about, that it was up to him to find the money for the best send-off possible, I can’t agree. Funerals, can go into the thousands and for what? It doesn’t change the love that’s felt, and that, is, the only thing that’s truly needed. We only spoke for about twenty minutes, then he closed it down. I know that he is the sort of person, who has to think about things. Adam’s general reaction to things he doesn’t want to talk about were displayed perfectly yesterday. Throughout it, he was agitated and uncomfortable, he couldn’t stay in one spot and wondering around the room, getting closer and closer to the door all the time. Responses that I didn’t only expect, but had totally predicted in my mind before we even started. I could have written the perfect traditional process, right down to the overly pious minister, who had never met me, nor knew the first thing about me, spurting out the same service he repeats day after day, after day, but he would have been just the same. It wasn’t my choices that upset him, just that we were talking about me dying. It shouldn’t be like this, we should all be able to have and adult conversation about death, even our own, without feeling that all of it is wrong. None of us what to die, but you and I could be gone tomorrow, and who knows what you want if it happened right now. There is so much choice out there, we don’t have to spend thousands on coffins, hearse and overgrown ostentatious displays of flowers. They don’t do anything. The closest friends, a single flower from each and few words that mean something, now that says something, that says, love.

I am not going to push it, not today anyway, but I told him that this week I am going to email a few places, to find out about costs and so on. Unfortunately, I can think of no one else, other than a funeral director who can help me in my quest. My one experience with them has left me feeling just that tiny bit hostile towards them, which I am sure I will get over once the process has begun. I want to know and I need to start sorting all this out, as I am sure, that I will find a new peace, in knowing it is at least sorted. Eventually, I want to put together a document, that lays it all out, step by step what Adam has to do and how to go about it when I’m not here to help him. I want him to feel that I am holding his hand throughout it, guiding and comforting as he works his way through the phone calls that have to be made, the emails to be sent and so on. Once I have this stage sorted, then, I can start looking into all that proceeds it. I know that some might think that I am dashing off to find out about what might be years away, but it might not. My PRMS is a progressive condition, there is no knowing when I might have another flare or what damage it might do. I need to do what I can, while I still can, not leave it as a gaping painful unknown.

Please read my blog from 2 years ago today – 18/01/2014 – Compensating is now failing

Once again I woke this morning not sure how to twist for the alarm clock or how, not for the first time, to find the strength to hold down the elevator button due to it’s strange position, but it is the only…….

The start of an idea

Posted on August 4, 2015 by livinginalimitedword

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………

Breaking down some fears

Posted on July 24, 2015 by livinginalimitedword

I had just taken my collection of medications and was sorting out my breakfast, but I kept tasting something odd, Fairy Liquid. I kept taking a mouthful of my coke to clear it, but there it was again and again. I think it must have been my fifth or sixth attempt to clearly it when suddenly there was something small and hard in my mouth. I wasn’t sure which as the coating had gone, but there it was, either my 60mg or 10mg morphine tablet. I now know that the coating tastes typically for all medicine, horrid and totally wrong for anything someone would want in their mouth. I also know that once again I am not swallowing things properly. It must have caught at the top of my throat and sneaked back up from there.

Swallowing for me has always been phasic. I get long spells when I have no issues at all, then suddenly, everything is sticking somewhere in the upper part of my throat. Usually it is slightly lower down, in the pocket that exists in the left side of my throat. Once there it isn’t a danger, but it can be really uncomfortable until the muscles relax again and release it. That is something that can take minutes or hours. Quite often though it catches above that point. I can think I have swallowed it and it’s gone, then suddenly, I have a mouthful of food from nowhere. I had noted recently that there was something new, a new twist if you like. With some foods, especially the noodles I love so much, that sometimes it doesn’t go down at all and just sits there over the entrance to my throat. It has to be light, just one or two noodles or possibly a single small tablet. It just lies there until I work on bringing it back up so I can try again. I guess that is what happened with the tablet, but this time I didn’t feel it. I am well aware of the danger that food holds for me, as there is a constant danger of any of it landing up in my lungs. That danger is amplified by the fact that I also have COPD. Food and/or liquid are a possible danger to everyone who has MS, it is a common problem and holds the possibility of pneumonia for us all. With my lungs not working properly, and not in the best condition, the danger grows.

I have now had two doses of pneumonia in my lifetime and I have no desire to have another, but I know that without a doubt, I will. The only good thing I can say for it is that you are so out of it, that you don’t actually care. That whole week last month that I was confined to bed, not because anyone told me to stay there, but because I simply couldn’t manage to be anywhere else, was a blur. Oddly, although it scared the hell out of Adam, it was strangely reassuring to me. I guess that we all fear being that ill. It had been so long since I had been that I couldn’t truly remember how it felt. I had developed this fear of what my future held, of spending all my time unable to breath and in pain. But what I had missed is that nature steps in and takes you away from it all. Your body might be incredibly ill, but your brain is blissful unaware of the whole thing. I suppose that is already happening to me. It is what I suppose could be phase one. I sleep for ten and a half hours four nights a week, and eleven and a half on the others, yes the change to those extra hours is working and will remain into the future. Add in my nap and phase one is there clear to see every day, over half of every day is spent asleep. I am out of it, away from my pain and away from all my problems. Already nature is protecting me from the worst of it. Those hours of sleep have slowly risen as my health has deteriorated and that is something I hadn’t really thought about. I know that there will be elements of my future that I don’t want to think about right now. But if my body is going to compensate by pulling me into sleeping more, inline with my health, well those fears diminish.

I was woken this morning, at 8:20. Not by my body, but by Adam trying hard to wake me. From the tone of his voice, there was clearly something wrong. In my sleep, I had somehow placed my elbow on the pad that operated the mattress elevator. Quite difficult to do, as the pad hangs off the side of the draw unit beside the bed. The top of the bed was slowly rising and I was completely unaware of anything happening. The same, unfortunately, couldn’t be said for Adam. Once awake and I had lowered it again, I lay there wondering at what point would it have woken me. I was still wondering when the alarm sounded ten minutes later. I actually think it would have taken until I slumped forward before I woke. I was still truly deeply asleep and totally unaware of it all. Sleep is my joy, it is a place that I am content as I feel no pain and I’m not fighting my useless brain every minute. I guess it’s probably happier too, as it can be a stupid as it likes without me telling it off. I fought hard to keep my hours of activity, I didn’t want to spend my life asleep, but strangely you do grow to be accustomed to it and you work your life around it. As long as my waking hours are constructive and feel right to me, will it really be that bad, maybe not.

Please read my blog from 2 years ago – 24/07/2013 – Slowly it happens

I have been in increased pain since early yesterday afternoon, I don’t know what triggered it, all I know is that I am in pain round the base of my ribs and it isn’t going away. Add to that a distinct feeling of I just don’t care about anything and you find a picture of me that says I just want to…..

Dreams and nightmares

Posted on May 18, 2015 by livinginalimitedword

At the very second I think our bed looks really silly, the cause was a stupid half hour a couple of weeks ago when Adam came to bed at around 5 am and woke me because he kept pulling the Duvet off me, I made no secret that I was pulling it back and had even checked where the edge of the Duvet was and had pulled any spare across me to his side of the bed. As soon as I started to settle again, the gentle tugging little tugs began again, not a straight forward pull but a series of tiny tugs, I don’t know if I wasn’t meant to feel them or what but after the fourth round of my tucking the duvet behind my shoulder to close the gap down the middle and it being tugged free again, I lost it. It might have been the middle of the night but I was angry and he knew it. Like most couples around the world we have had small spats over covers at many points in the past but this one really got to me, maybe because of this new important that every second of sleep has grown into, but this one got to me. Adams uncle had died a few months ago and he had received a small but unexpected amount of money, money that we hadn’t made up our minds what to spend it on, suddenly we had the answer, a king size duvet for our double bed. It had been something that I refused to even think about in the past as well it just looks so silly, swamping the bed in this huge duvet, yes I had seen it before and I didn’t want a silly looking bed, we now have a silly looking bed. It seems that there is nothing sacred any longer, my health is slowly taking over every aspect of our lives, even the appearance of our bed.

I am still sticking my heels in as deeply as ever to the whole idea of changing our home when it comes to disabled adaptations, we have no grab bars or anything else that could even be seen as an adapted just for my disabilities. The closest it gets is my perching stool and as ugly as it is, it is needed as I just can’t stand long enough in our kitchen even to make my lunch or to take my meds. I am sure though that like everything else if I wasn’t so pig-headed about it, I might actually start to find them helpful, but I can’t get my head past how it looks and what it would mean. I still see it as the final surrender, that moment when I have to put my hands up and say, I am disabled and there is nothing left that I can do by myself, without assistance even if that assistance is an object rather than a person. I suspect we all have that red line that crossing will be the most painful thing to do, that one thing that screams I have lost. I, unfortunately, have rather a long list of them, from grab bars, to changing the layout of the house so that if I fall it won’t be onto a pile of crystal glass and the worst most terrible thing I can think of, is a commode in the bedroom. To me, that is the day that they might as well take me outside and shoot me (and I do mean outside as it would make a terrible mess of my carpets) as I can’t and don’t want to even think about what else goes hand in hand with someone needing such a thing.

I believe that it is nothing more than the human state, that stops us from imagining ourselves in such a state of poor health, just as most of us can’t imagine ourselves as a truly old person, we are all immortals in our own minds, but chronic illness often forces us to, whether or not we want to. It is one of those cruel things about being ill, we are faced not just with our own mortality, something that is hard enough on its own, but we are also forced into seeing ourselves as an invalid, in the traditional use of the word. The person who lies in bed, unable to do anything, even reading a book takes too much energy, all we can do is lie there, being fed and cared for and it’s a difficult thing to imagine in any way as to how it would feel. Yes, I can conjure up this romantic picture of lying there with my hair perfectly brushed and laid out around me and I’m dressed in a victorian nightdress for some odd reason, but how it would feel, that I can’t get my head around at all as I just get this scream of NO coming back at me and the closer I get to the image the louder that NO seem to get. I can only guess that it is part of the same thing that makes us believe that in our heads that we are always a teenager, despite the fact that our bodies bear no resemblance to the one we had then, our minds just aren’t laid out in a way that allows us to even imagine ourselves as any less than we are at this moment.

It is so counter-intuitive to everything that we do in our minds when we think of the word future. The future is always a bright and breezy place to be, it is a place filled with flowers, fun, and fineries, it isn’t a bleak and black monster, as our dreams of the future are alway just that dreams, not nightmares. From those first dreams we form in childhood, they are always of things being better, of improving our lot and even now I still have those dreams, but the difference now is there is this horrid thing called reality that can’t be ignored. Try as I might, it always appears and stands there scolding me and telling me to stop being so silly as those airy fairy dreams, just can’t happen, no matter what I might want to think.

Chronic illness is an insidious worm, slowly munching everything that comes within range and like anything that never stops eating, it just gets bigger and bigger. We can wish as much as we like that it was a caterpillar, but it never turns into a chrysalis and it will never have beautiful wings that will fly it away from us, we’re stuck listening to its munching. Self-preservation is our only defense and maybe it is that that is screaming NO, maybe we aren’t supposed to be able to get past it because we simply wouldn’t be able to cope if we could. I believe that what we imagine is always worse than it turns out to be, imagination has no limits, but our bodies and our reality does. To date, there isn’t a single thing that has turned out to be as bad as I once imagined that it would, I suspect that that will be the truth of our futures, we can’t imagine it because if we did, we would scare ourselves too much to ever get there. All we can do is keep going until we find out for ourselves, we might all have our own ideas about things like living wills, something I am very in favour of, but the truth is that writing one is guess work, based on what we have seen and what we can imagine, when you can’t imagine what you are left with is the truth and none of us know that until we are there.

No matter what reality says, I can’t let go of my dreams and I don’t think that is a bad thing as without them all I would have left would be my nightmares and no one wants to live within those. Dreams aren’t that silly, even if they are formed inside a silly looking bed.

Read my blog from 2 years ago today – 17/05/13 – This is my place

A dull drizzly start to another weekend in Glasgow. I know most people think Glasgow is always covered in drizzle but take it from a non-Glaswegian, it isn’t, well not any worse than it was when I lived in Plymouth. Your relationship with the weather really does change once you have no need to actually go out in it. I never was one for sitting around in the sun, I was actually totally……