Dealing with loss

A couple of days ago, there was a comment left to one of my posts that I thought summed up for many the emotions of life with chronic illness entirely.

It seems like whether we lose memory of life or lose the abilities of our previous activities and people in our life the common denominator is, a profound sense of loss.

“A profound sense of loss” really is the overriding emotion that I have had from the start to today. Its intensity varies massively, as it is always accompanied by a myriad of other emotions, but when they die back, what is always left every time is “loss”.

When I first read the comment, I sat for a few minutes and desperately sat trying to find something that I could counter it with. I wanted to find something upbeat and genuinely positive that my health had given me because it has, but that’s my life, what I needed was something that I could say with confidence was universal. Try as I might, I couldn’t find it and I didn’t like that. But then I realised that that is the problem with life, when you detach the personal, what is left, means nothing, because all life, able-bodied or disabled, the personal is what makes it tick.

We are emotional creatures and it is our emotions that make life what it is to all of us. Just as writing a plain list of all our symptoms, really says nothing about what it is like to live with our health. If we each wrote an equally plain list of the elements that make up our daily lives, it says nothing, about what it’s like to live that way. So, yes, it’s easy to say that there is a “profound sense of loss”, but there is also so much more, we only feel the loss, when we look for it. I for one, wouldn’t say that “loss” is the overpowering emotion that I feel, when I look at my life now, compared to what my life was like even 20 years ago. Yes, I have lost much, but I have also gained so much as a person as well. Chronic illness is the most amazing journey anyone will ever go on, and I really hate that word “journey”.

I don’t even need to think about this one, as I know totally if the “me” from 20 years ago sat and read this blog from beginning to end, she would recognise herself as the same person at all. Of course, she would recognise the back history I have shared, but without the slightest doubt, the way I look at life and the world has been transformed by my health. It’s hard to pinpoint all the changes, but I know that I have become far more patient and understand about everything. Probably the oddest one, when I think about it, is the fact that I have far more enthusiasm and a greater positivity about life. As I said, on the surface, that just shouldn’t be the way it is, but it is. It is so back to front, but, when you are forced to look at life because you know you’re dying, well, for the first time you truly understand, the wonderful gift you have been given. The biggest change though actually happened long before the doctors stated my personal clock ticking, in fact, it happened not long after I became housebound.

I was still working but from home, and not having to go through all the preparation needed to leave the house, and undoing it all again, on my return, meant I had spare time. I had the time to actually sit and work on my past life and to forgive all the people who had ever hurt me, and most importantly, to forgive myself for the part I had played in it. I had never really had the time to do any of that, and I hadn’t been willing to make the time either. I have written about it before and I can confirm without a doubt that it is one of the best things I ever did. Once you are at peace with your past, you can start living yours, even if it is a housebound one. When they started my countdown with the diagnosis of COPD, well I was even more glad that I had taken that time, as it was one less thing to deal with, as when that clocks started, you have enough to think about without all that pain, getting in the way. Losing your health, losing your friends, losing your job and losing your freedom, is a huge amount of loss, but it’s also a huge amount of gain if you learn from it all. I can see with ease, that many wouldn’t see the point of learning, because you’re never going to have a new friendship or a new job, but if you learn, you grow as a person, you understand more about life.

I have always said that depression is something that we can avoid, but doing so takes a lot of strength and a determination to find the positive in every situation. It also means not dwelling on the huge amount of loss we have in our lives. That forgiveness I found for the major painful events in my life, is a forgiveness that I have now extended to all those losses. By putting myself in the shoes of my friends who left, I understand how it happens and how there is no intent of causing me pain. Understanding each event that brought us to this point in our lives, and by finding the good in every day, even the ones where your health has won, means that there is always good in our lives. Finding our smile, being able to look at that list of what we have lost and say, “I understand, but this is my life now, not then”, is what will get us through all that is still ahead of us.

I wasn’t born positive, but neither was I born negative. I have learned to be who I am and I still have a lot of learning to do. Giving up is when those losses have won.


Please read my blog from 2 years ago today – 18/04/2014 – True control

Last night I found myself sat on the settee in real pain, even though I had only taken my meds about an hour and a half before, I was in a pain that I just wasn’t able to relieve. It started in my left side, about in line with my breast and it felt like someone had shoved a rather large and sharp knife into me and they were happily moving it back and forward between my ribs. Clearly it was a spasm, I am beginning to wonder if I will ever have peace again from my intercostal muscles, it is now over a year from the first time I felt it, but feeling it was something I was having ……

What’s wrong?

I don’t know what time it was, as I didn’t look, but I woke because I was cold. In fact, it would be fairer to say that I was freezing! The Duvet was totally clear of my upper body and I remember quite clearly just thinking, “That’s why I am cold, now I understand”. Then I did absolutely nothing about it and just went back to sleep. There have been times in my life when I have truly questioned my sanity, when I actually woke for the day, I was doing so all over again. Not only was I still uncovered and freezing, but I had my head firmly placed against the draw unit beside my bed and instead of trying to turn off the alarm, I spent several seconds madly thumping the timer I use for my afternoon nap. My brain was so far away, that I had slept right through the fact that my chin was being sliced into by the sharp edge the draw unit, and that my right arm was totally dead, as it was hanging off the side of the bed. Even allowing for all of that, I had only one thought, “I don’t want to wake up, it’s too early”. Getting dresses was a mix of luck and forward planning. For a long time now, I carefully arrange my clothes as I take them off, just in case, I have a morning like this. As I swing my legs free of the bed, my feet settle exactly into the top of my pyjama bottoms, so well set that my feet don’t normally touch them at all, their first contact is with the floor, straight through the trouser legs. Without moving my legs, I can now also slip my socks over my toes, and then grasp their tops, inside my trouser legs and unroll them from toe to knee, a reverse of my night time movement. My top hangs off a draw handle, in such a way that I simply lift and flick it over my hands and the rest of the process, is simple. One dressing gown also hangs on a draw handle, placed so it can be lifted and my arms will slide with ease into the arms holes. Dressing gown two, I have to stretch for, as it is draped on my wheelchair, but it to is laid down in such a way, that again, no thought is needed. There is only one thing left to do, to grasp the tops of my trousers and pull them up as I stand up. Done. Dressed without thought of any form what so ever.

So, clearly this is far from the first morning where I have woken up with the totally feeling of dragging myself out of the middle of the night. The only time in my life, when I have felt this sleep deprived before, was when I was, no, not when my children were babies, that isn’t true sleep deprivation, it was when I was working on the radio in the morning and Djing live every night. If I was lucky, I got 2 hours sleep at night, half an hour on the train there and the one back, followed by 2 hours sleep in the afternoon. That was when I was lucky! It wasn’t the type of work where being half dead, was acceptable, no matter what, I had to be, bright breezy and on my toes, the whole time. Which was one of the reasons, if anyone wondered, why I gave up the radio. I didn’t like it and I was half dead. Right now, I don’t feel a great deal more awake than then. This morning brought the whole thing back like it was yesterday, on the good side, I didn’t have to be out of the house in 20 minutes to jump in a taxi to the station. On the bad side, I am sat here 2 hours later, feeling just as sick as I did most morning on the train. I have been struggling for days but this one is without a doubt the worst. For once, I can honestly say, that as soon as I have the bulk of today’s online contribution done and dusted, I will be going back to bed.

It’s odd how feeling in a certain way, made me remember an event in my life. You wouldn’t think that there were enough individual feelings for it to work that way. Yes, if we are talking about flavours or colours, they both have so many fine divisions that make them almost endless in possibilities, but feelings? I honestly wouldn’t have thought so. I am very aware that there are degree’s of everything, from happiness to sadness, as there are from well to sick, but that how we feel in any given moment could so clearly trigger a memory, surprises me. I don’t think that being blissfully happy, ever meant that my mind instantly jumped to somewhere else in time, so why does feeling terrible? I suppose it could just be the bodies self-preservation process kicking in. A reminder that you have been here before and remember the harm it did you then. But to wake up and almost instantly, despite feeling confused and as though I was drugged beyond belief, that my brain could still pluck out that one short period in my life where I pushed myself beyond all logic is pretty amazing. The more I think about it, the self-preservation angle is probably the absolute truth of what happened. We would never get anything done if we spent our entire lives, remembering every single time we felt the exact same way we do at any given moment. Remembering the bad feelings has a purpose, remembering the good ones, is just fortuitous.

Memory is such a complex thing, I don’t think, it is something any of us ever think about, until we find it under threat. Despite the holes and its flaws my memory, still surprises me daily at the things it comes up with. The oddest one has to be when it comes to TV. I have found myself hundreds of times, being able to fill in the detail of a show, by remembering what happened in episodes years ago. While at the exact same moment, been totally unable, to remember the name of the character, who is on screen and who I am talking about. Actually, I guess that the TV, just shines a spotlight on it, as the exact same thing, other than being able to see the person, happens to me all the time when I am relating stories. People that I knew really well, spent a lot of time with, are now just pictures in my mind. Who they are? Where they lived or who their friends were, totally escapes me. I have streams of relatives, who I couldn’t tell you a single thing about of worth, including their names, I just know they existed, some probably still do. Despite a handful of names, I couldn’t tell you who I went to school with. The majority of whom I spent my life with from aged 4 through to 13. They are now just greyed out faces, bodies filling spaces and nothing more. So much of my life is gone. It had to have been there once because I am aware of the spaces, but their details, have diminished, not even into dust in some cases, some have totally evaporated.

It isn’t just my childhood if it were, well I would put that down to age, the distance in time making it unimportant and forgettable. I can come right up to the time when Adam and I met, and even closer, those holes are there and their constantly growing. It might not be surprising that I can’t remember the names of all who came to my first marriage back in 1977 when I was 16, but to not be able to remember who was at my second, in 1999, isn’t just sad, it’s scary. Sometimes it feels as though my health has set of little Pacmen scooting around inside my head, chomping out the next bit of information that I might just need. Every time they see that brain activity light up, they fly towards it, racing to get there before I do. I guess that is why I often refer to my health as my “Munching monster”. It doesn’t just munch away at my brain, it munches at anything that I might possibly need, muscles, nerves, who knows, maybe bone as well. In fact, as I have Osteoarthritis, yes, at bones as well. We have been in a race against each other for as long as I can remember, which probably isn’t as long as I think, but the whole problem with any race is, there are far more losers than winners.

It doesn’t take a genius to work out, that right now, it is inching ahead. Just like I have done before, I need to regroup, to work out what I have to do and how to do it. How do I hold onto my life, without spending all of it feeling as though I’m playing catch up? It’s a constant question in my life, probably in many people’s lives. Assessment is an ongoing process, but for a long time now, the answers have all come back balanced, that’s why it doesn’t make sense. There isn’t any single point or even a collections that say “this isn’t working”. Everything individually is working fine, it’s just the overall result that is wrong. If you can make sense of that, then please explain it to me, as I don’t.

Please read my blog from 2 years ago today – 07/12/2013 – A plan for life

Adam came home last night from work with what he said was a small gift for, not unusual in any was as often he comes home with some cheese I love or something or other that he knows I enjoy to eat, in the past……

It’s all about sleep

There is nothing in this world as wonderful as a new pair of earplugs. I only use a set for a couple of days then change them, but last night their impact on what I could hear, seemed somewhat marked. I know I have said it several times, but I so wish I had bought both them and my eye mask 40 years ago. Just like there are occasions that you step into the shower it is so perfectly balanced in temperature and strength, that you just don’t want to have to leave it. Last night, when I put my earplugs in the closing off the outside world, was sublime. There is a perfection, even a joy, in finding yourself in total silence. Add the total blackness that the mask supplies and the comfort of my bed with the duvet fluffed and settled over and around me, and my isolated cocoon is complete. There is nothing like being allowed to be totally undisturbed by anything other than your own thoughts. Isolated and totally free of interruption. I was so ready to sleep last night that finding everything just falling into place without effort was wonderful. I didn’t lie there awake long. Just long enough to appreciate how good it all felt and to run through the day before drifting off into glorious sleep.

I was woken by the unmistakable demand of an over full bladder. No matter how it complained, I was finding it incredibly hard to find the conscious levels required to actually move. It is a feeling that I know all to well and it’s one that I really don’t like. It’s almost as though someone has drugged me and I am having to fight my way to a position where I could show I was alive. It is a real struggle, one that takes several attempts to actually achieve. Pulling myself to the surface over and over, then failing as I slipped back into a fitful sleep. Even when I do manage to actually move and pull myself up into a sitting position, I can’t even then actually move with ease. I sat there this morning feeling terrible and wishing that I could just lie down again. The world was moving, I could feel it although my eyes were shut, I also knew it wasn’t moving at all. It’s a feeling of dizziness but it is totally in my head. So much so that my actual brain feels as though it has been turned into mush that is swimming around within my skull. Often I wake to find that the machine that pulped it is still active and thumping in time with my pulse, whilst a strange sort of low whistle sounds in the background. In normal dizziness your eyes confirm what you feel, this has no affect on my vision at all. I was sat there feeling completely wrong and struggling with a simple question that had to be answered before I went anywhere. Pyjamas or just dressing gown? It was just 14 minutes until the alarm was due to sound, but I just wasn’t sure if I should just get up and stay up, or come back to bed for those last few minutes. I decided that getting up was the logical answer and once dressed I headed for the loo.

I have woken many times recently feeling like this, so I knew before I stood that walking was going to be interesting and that I was going to have to walk with care. My balance always starts to swim with my brain, one second throwing me backwards, the next to my side. Staggering along with what I can only describe as a penguin shuffle, is now a well-known start to my day. From doorpost to the wall and onwards until I find the safety of somewhere to sit again, this morning that was the much-needed relief of the toilet. It was a good thing that I wasn’t in a hurry to do anything else, as I swear that every drop of yesterday’s 2 liters of fluid was all there waiting to leave. From one seat to another in the next door kitchen was my next goal, along with the first cigarette of the day. something that didn’t go well. Just a few puffs and I had to put it out, I just couldn’t take it as it was making me feel even worse. I sat in the kitchen as I have found myself doing more and more when waking at night, not just in the morning. I was just sat there doing nothing, unable to do anything might be a better way of putting it. It’s like I don’t actually know how to move, I sit, blank and cut off from everything, almost as though I am about to go back to sleep exactly where I am. There is a numbness surrounding me and it closes in around my brain more than anywhere else. My mornings are becoming a battlefield, this is happening all to often for my liking. It takes time, a lot of time for me to actually start to feel normal. Today, it was just over an hour before the worst of it was gone, but I still don’t feel great.

Jake just called me and when we were talking, I suddenly stopped. It was more than my normal forgetting words or what I was talking about. It was like those blanks that I get when sitting in the kitchen. It was so dramatic a silence that it was Jakes’ voice demanding was I OK that snapped me out of it. I said, “yes I’m fine”, then shut up again as I desperately tried to work out what had just happened. I still don’t know. My brain just stopped. I was suddenly nowhere and nothing, without a clue of how to get back. Even when Jake tried to help me get back on track, I struggled to find anything that matched the words he said back to me. I doubt the whole thing even lasted a minute, but it felt like it went on forever. That is the first time that has ever happened to me. I don’t like it. It somehow felt like a terrifying place to be and I don’t want to go back there. I often got lost in my words or forget what I was talking about, but this felt so different, it was deeper and stronger than anything I have ever known before. It has even managed to leave something behind it, other than that fear that it triggered. It has left me feeling lost. Not just about what happened, it’s a feeling of being lost about everything.

I said yesterday there are so many small things happening just now. I can’t pick one out which as being the most important or the reason behind it. There is nothing I can blame for it either, but what I do know is something is changing and something is growing in what it is doing to me. My right arm this morning was once again not quite right. It wasn’t as bad as Sunday, but it was numb and I couldn’t make a closed fist again. Now, it’s back to normal. The only common string seems to be sleep, all these new things seem to be worse when I wake, which is totally the opposite of how my life normally is. It feels as though I have two different things happening to me right now. My PRMS and this other thing, which I know is managing to make my PRMS worse at the same time. Whatever happened when I was talking to Jake, I don’t know, but I really don’t feel right, even writing is hard. I just hope it makes as much sense to you, as it does to me as I am writing it.

Please read my blog from 2 years ago – 21/07/2013 – First a funeral, then the will

Well the plans are started and we have talked through a range of things that we agree has to be done so that we can both move on and we can both make the most of the time we have with each other. Strangely it wasn’t……

Meeting aliens

I went to my bed early last night, I was so tired that I just couldn’t stay up any longer, but my extra sleep was wiped out by having to get up twice. I should have know before I headed to bed, when have any of my plans to make things better actually worked in the last few years. I thought that yesterday’s laxatives just hadn’t worked, but something was telling me not to take anymore yet, just wait, they worked sort of just before midnight. I say sort of, as it was followed by the wind that had been missing for the last two days and the unmistakable feeling of my internal contents repositioning themselves, a few minutes of relief from the pressure across the top of my stomach and it was back before I could even enjoy it.

I woke this morning both tired and cold, the house seemed to be freezing and 2 hours of having the fire on in the living room, hasn’t really made a huge difference. I had told Adam the other day that as we now do have the central heating off and as the house is holding it heat, that this weekend he could open the curtains for the first time this year, I so wish I hadn’t. We really don’t seem to be able to shack winter off this year, but having built up his hopes, I just can’t let him down as I know how much he hates the fact that I close the house down for winter, however long it lasts. I know it is something that a lot of people don’t understand, but there is a fact, double glazing or not, we loose heat out of the house through our windows, so I keep the curtains closed right through the winter to save money on heating. The nights are still cold, so I at least I can still get away with closing them long before it is dark, I doubt it will end our marriage long argument that sunset is when the bottom of the sun touches the horizon, not when it becomes totally dark, even showing him the proof online, hasn’t changed his personal opinion, he is right, the rest of the world is wrong, I just smile.

We sat last night and had a talk about going to the hospital on Tuesday, Adam wanted to know if I had finished writing the piece that I want to take with us. I had to tell him that I haven’t looked at it for a couple of days, as I just didn’t think the doctor would want to read everything that I had written, it is too long at a page and a half. He hasn’t read it yet, but still thinks that it is a good idea to take it with us and to at least try to get the doctor to read it and add it to my notes as we are in total agreement now that I can’t go on like this any longer. Anyone looking at me in the last few days can see that I am in permanent discomfort and frequently in pain, but getting that across, the actual impact of living like this, well I don’t know how to do that other than in the written word.

When you have been ill for a long time, you begin to see that the worst symptom is the one that is dominating your life at that second. It changes, day to day, week to week, but no matter how bad the pain or discomfort that I am living with right now, at this second, the symptom that is getting to me the most is my brain. I hate this, I hate feeling that I am locked inside with a limited ability to get across what is happening. That stress of just talking to someone other than my family locks me even further inside, it wipes away all those things that I want to say and I find myself searching around an empty mind for not just the words, but the fact as well. Add on to that the stress of being outside my home, my cocoon, and I diminish into a silent lump that says little and when I do, it is interspaced by stutters and word searches that can go on forever. This is one of the problems that I suspect happens to everyone with a condition that affects our brains, when we are talking to people who know that, who understand it, we have a freedom that helps in a strange way to keep us more fluent, even if only in our imagination. Put us in front of someone, especially a doctor who is, in fact, a doctor who doesn’t specialise in our condition, but are a god when it comes to our health and we fall apart. Yet there we are because we have no choice, no other route into getting help, any help with how to manage what is happening to us, searching for the person or solution that can put the breaks on to the spiral we are caught up in.

There is something so wrong with this whole process, this determination by the outside world that we are part of it when, in fact, we are clearly not really part of it at all. I am incapable of functioning like every other person out there, I freely admit that I know without a doubt that I am not capable of it any longer, not just physically but more importantly mentally. It is an alien environment for someone who hasn’t put a foot into it in 8 years, yes I have been out, I have been to the hospital but I still haven’t put a foot outside. I haven’t been out there by myself, having to deal with people, with conversation, or even with talking to a doctor by myself, I always have Adam with me, as I would be a million times worse if he wasn’t there. There is a limit though to what Adam can do for me, he doesn’t live inside my body, he just watches me, he doesn’t know the pain or the discomfort that I am in, he just watches it and rightly or wrongly, I hide as much as I can. Take me out of here, take me into that alien world the place that now means nothing to me other than fear as I might as well be being dumped on the moon, as my memories of it are as clear and as detailed as my knowledge of a world that has changed beyond my comprehension. If those doctors whose care we are in really wanted to help us, they should come to us, they should speak to us in our own environments where there is a good chance that we would be more able to actually tell them the details that they need to truly be able to make our lives better. I know that there is as much chance of that happening as there is of my actually stepping on the moon.

Being housebound changes so much about how we see life and the world we can no longer reach, it is a little like moving city, then returning to it several years later to find that someone has rebuilt it since you left and nothing is where it once was and the people you once knew, have all been replaced. My world ceased to exist 8 years ago, what is out there, the people who are out there, are worse than aliens, as aliens aren’t familiar, aliens don’t speak a language that you sort of understand nor do you feel they should understand you. I am locked in a time warp, I am a person who is out of sight and out of mind of those who I still depend on to make the life I have better. I am in a position that until you share it, I sincerely doubt that anyone can truly understand the impact that it has on everything and every day. That is truly where our care falls down, no doctor who hasn’t been that ill that they have become unable to leave their homes, or who live their lives locked in pain can possibly understand just how it destroys you, all they can do is half observe what is there in front of them, I say half observe as that is all of the picture that is available to them.

Today I am going to try again to put into word something that a doctor will read and will feel, if only slightly what it is now like to be me and hope that somehow they can actually give me the help that I need. It’s now my fifth month of living like this, my fifth month and I have had enough, there has to be something they can do to make it more bearable.

Read my blog from 2 years ago today – 16/05/13 – Withdrawal or Overdose

I have now for years always taken my final medication for the day at 7pm, I started taking it at that time as I was up daily at 4:30 am for work so it fitted well into the required cycle. 7pm is also the time that I always switch mentally from daytime mode to night time, I pour out my glass of coke and replace the contents of my glass with a well deserved Gin and Tonic. Well deserved then as I would have been working from 5am almost….

Losing me

I woke yesterday afternoon from my nap and I couldn’t believe when I managed to stand up the pain that was right around my mid region, earlier in the day I had been hopeful that it was starting to settle, I should have known well enough that it was too good to be true. It doesn’t seem to matter how long you are ill, that hope that things might just get better never leaves you, but even a peaceful two hours sleep hadn’t managed to change anything, other than to aggravate things somehow. Because of how things have been for the last few days, we had decided between us that it was best if the shopping was delivered in the evening instead of my dealing with the shopping arriving by myself in the morning. Nothing seems to be going easily for me just now and even what should have been something to make my life easier, it made it worse. I know that it is all part of this stupid illness, but the rate that I now get wound up is ridiculous and it is always over the daftest of things, so when the doorbell eventually rang, fifteen minutes outside of the allotted slot, well I was ready to explode. Adam, of course, was being overly polite to the delivery boy saying it wasn’t a problem and not to worry about it, whereas I was demanding a good reason and had been on the verge of phoning to put in a complaint. I get so frustrated by this brain of mine, 5 years ago I might have felt that way, but I had it still under enough control that no one who didn’t know me, wouldn’t have noticed. When your brain is out of your own control to the point that you can’t even see it is happening, well afterwards, it is really embarrassing, to the point where you can’t even help feeling a bit ashamed of yourself. Adam is used to it now and he handles it with his normal calm self, but when I can look back on it the next day, well the embarrassment just grow.

Our whole evening was overshadowed by it, between the fact my mind was refusing to settle back to normal mode and the pain that had been triggered by all the bending, stretching and walking required to get everything done quickly so that our whole evening wasn’t lost, well I wasn’t in the best mood. Wednesday nights have been for a long time now our night to watch TV that we both truly enjoy, not just what is served up by the BBC, which is excellent most of the time, but well does go a bit off mid-week. Those three hours we have together every evening are special to me and I hate it if there is anything that is happening that eats into it, even if it is just a few minutes, losing half of it felt devastating. I can sit and tell myself a million times that it was just the shopping and it was just a few stupid minutes out of a lift time, but it doesn’t change a single bit of how I felt or how little control I had over the way I was acting. I used to think that when I started to loose control of my mind, that I might also have the blessing that I wouldn’t know that it was happening, why I thought that, I don’t know, maybe it was just wishful thinking. Over the last years, I have felt every second of every step along the way, knowing and feeling terrible about it but totally unable to change it. That is the bit I don’t get, how can you know you are being totally irrational or rude or any of the other things that happen, yet have no control to stop it, apologise or correct it. Brains don’t work the way I thought they did, in fact, I would go as far as to say that brains are the most frustrating part of living with PRMS, pain is nothing in comparison to losing yourself. Not being able to remember or to vocalise your thoughts and feelings are one thing, not being able to be civil or stop yourself from acting like a petulant child, well that’s scary.

Just as I know that the pain has increased and that my memory has become worse in the last few years, my lack of control of my personality, as that is how it would appear to anyone who hasn’t known me fro years, has also increased. Adam has lived through every moment of every change that has happened to me, he knows the real me, but that doesn’t make it right that he has to put up with this, especially as we both know that it along with everything else, will only get worse. Emotionally I am all over the place in the last few months, I think I have cried more than I ever did in the past and most of it for nothing, I would rather be sat in tears than getting wound up and angry, but I don’t have a choice. From the day they confirmed that my brain function was deteriorating, I knew that the future was going to be nothing like I had had it pictured in my mind. I had settled myself with the idea of being in pain and physically disabled, but I hadn’t given a second thought to losing my mind as well. I knew that it might affect my memory and concentration, but to actually change me as a person, making me short tempered and agitated over nothing, I never allowed for that at all. To date, keeping my life in a strict routine and to not bring in outside people into my life has kept things reasonably level, that’s why I wanted Adam involved in getting the settee’s sorted out and the new covers made. I didn’t want to lose it in front of strangers and I truly needed his help when it came to sorting out the money and so on, dealing with figures is something else that is getting harder and harder. When you were once totally independent, never relied on anyone for anything, it’s hard to accept that you can’t do anything, even deal with a shopping delivery on your own, just as hard as that is knowing you are putting more and more onto someone you love and they too are the one who receives all the bad stuff as well, because they are the ones who are there.

I have always said it and it just seems to get truer and truer, it isn’t us, the ones who are ill that have the hardest part to play, it is our partners. I know what is happening to me, I feel every single part of it, the seen and not seen, but I also know that I couldn’t bear watching if this was happening to Adam as we know each other that well, that neither of us can truly hide anything from the other, no matter how clever we think we are.


Please read my blog from 2 years ago today – 5/03/13 – Changing expectations

When I stopped writing yesterday I was so uncomfortable that I decided to try and sort out my bowels, I have suppositories in the house but using them by myself to date had been somewhat comical, but I felt I had no choice but to try. I am not going to paint a picture, but it is enough to say that…….