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 ……

Finding the hope

I seem to be spending a lot of time crying just now, not something I want to do but something that I have to do. I am not normally the type of person who wallows in self pity, but to be honest it is more grief than pity. I have for to long been convincing myself that I carried off an award worthy act of everything is OK, this is my reaction to learning that my act was fooling few and some not at all. As creatures we really do think to highly of our abilities to fool the world, when in fact the only person we are truly fooling is ourselves, well that broke down, so what the world moves on and this is a new day. See I can say it, do I believe it, well yes and no. I believe it in that it is a fact, but I don’t believe it, when the tears start again.

I have had some wonderful comments and messages both here and on Twitter and I thank all of you for what you have said and if any of you doubted that I would rip the pain from inside me and slam it down in words, well I hope you have lost those doubt, there is nothing that I won’t pass on to those who will read, otherwise what would be the point of doing any of this. This is day three of trying to put myself back together and I am getting there, yes there are still tears but there is also a relief that I have at last been forced to look at myself as I am now and put to bed the idea that I can some how claw my way back to who I was just 2 or 3 years ago, if not who I was 10 yrs ago. It is the old me that I am grieving for because I now see she has truly gone and can never return. This stage of my illness is a hard one and I doubt if it will be the last time that I put myself through this, yes I do realise it is me that is the root of this, not anyone else, everyone else saw the truth and politely worked with it.

It is mad how much we can upset ourselves, and how much of our lives is spent trying to hide from what all other know. The simplest example of one we all do it the kidding ourselves daily when we look in the mirror to the fact we are growing older or that we have put on some weight, I was kidding myself about everything. I know I had written before about loss of concentration and so on before but I had sugar coated it, the stark reality was to hard for me to take, so I built a world that let me ignore it and hid. I am now standing outside that world and facing the one that everyone can see and has listened to for years.

I accepted years ago that I can’t escape this house, that this is the space I have to live in and there is nothing else available to me. Now I am having to accept that I can’t escape this body or mind either, there is nothing else available. I have cried less this morning and I feel stronger in myself, more able to see a way through if you like. Today has started with a more positive feel to it, a feeling of being myself who ever that is, but I suppose it might not be as bad as I feared, after all I don’t actually have much of a choice do I.

I am still in here

Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring the tears down step by step until there were just a tiny speck now and then. It was the strangest experience as nothing had been said or happened immediately before I went into the bedroom, Adam and I had talked earlier in the evening about Teressa being here and what we had talked about, but from there until bedtime I hadn’t felt that way at all. I can’t even think of anytime in the past either where anything like this had happened, it was as though I had been waiting until I was alone to let it out, but I have no memory of even thinking it until it happened. I lay there for a while, thinking and feeling still that pain with which my mind was screaming, as I write this I can feel it again and there are tears at the edges, as Adam is asleep on the settee I am holding them back as there is no purpose in letting them go and disturbing him.

I can only think that yesterday during the day I was still feeling the joy of the time Teressa and I had spent together, when talking with Adam I remembered how bad I had been at one thing, I had noticed how far my ability to talk and control a conversation had changed. It is Adam that I really talk with and he is all too aware of the way my mind blanks and the muddle I can get into when my thoughts get split and either totally or partially lost. Spending a day with Teressa who hasn’t seen me for a couple of years had shown me the change starkly and I knew she saw it too. The person that is there for others to see has really changed in that time, even in the last year I have had to admit to myself there is totally no way that I could now hold down a job, unless they were the most patient and irresponsible company on the planet, who wanted stats but didn’t care if they were right or wrong. So much of my now feels locked off, as though I know it is there but even I can’t bring it to the forefront and make it work. I know much more has changed too and that I am loosing more than I can reawaken and yes I am lost somewhere inside. Maybe that was what was screaming last night, or maybe it was me actually taking the next step of totally admitting, not just saying or writing the words, but accepting it in my heart that I am disappearing in many ways that are hard to explain.

I can put a quiet smile on my face and nod to myself saying it is all alright, I am still coping and I am still able to do much, but as true as that is, there is a huge bit missing. There is a huge step from knowing, saying, writing something to truly believing and accepting. I want to cry now and I have wanted to all morning as I am hurting, hurting not because of a spasm or any other physical pain my MS throws at me, I am hurting because I am just a little lost as to what happens now and how long will it take. My silent screams of last night are still echoing through me and when pushed away for a few minutes, wait, until there is a tiny gap to echo again. I have the deep desire to go back to my bed and just stay there for awhile, hiding from everyone including myself. It feels as though it would be somehow easier to manage but that isn’t managing that’s running away.

I know myself well enough still, to know this feeling will pass and I will move on, compensate and adjust, but for today I feel bad, bad about a loss I can do nothing about. Giving you the words that can open this feeling to all isn’t something I am finding easy, I know I am circling it and touch some edges but those edges are possibly too raw to explain. How can I describe something that doesn’t make much sense to me other than to say I am still me, just not the one that can keep up with you.

Unexplainable Loss

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what to do or what was happening. I know it was only seconds but the first thing I said, well actually shouted, was “AHHH, I’m never going to talk again”, as I slammed my head down towards my knees, failing to even manage that as my head stopped a couple of inches above them. I was trying to remember the name of the rehab hospital for the forces not far from Glasgow, a place I have been, and I have raised money for in the past, but I could find nothing to even help the word appear. If that had been it and the word or others appeared, it would have been fine, but I was aware of searching madly in a total blank and suddenly that search stopped, there was totally nothing not even words in my mind circling to get there, nothing, a total void. It lasted seconds but I know it happened, and I know I have never had that happen before. The words that came out were the actual first words I found and they came from deep inside as a scream of fear. For seconds or even less that was my heart felt fear, that no words would appear and no voice would be able to get them out.

MS and many other illnesses effects the brain and speech is a normal thing to be attacked and to become difficult to impossible form or be understood. The closest I have seen to the way I feel is those who have had mild strokes, I recognise the look in their eyes, as they try to be understood, searching and trying desperately to push the words out of their mouths. I can empathise as I live there with them a lot of the time. My speech is very varied through out the day, the more tired I get the worse it gets. I hear in Adams voice a frequent frustration with me when I am at my worst and if he is tired to the snaps and jump-ins increase until I have to stop him as he winds me up more and more resulting in everything getting harder. We all forget words when talking from time to time and I am sure you know yourself that you do it to. I remember that annoying feeling from years ago myself, but this is so much more and so much more frustrating. I know, and I can prove it is a speech center problem as I can sit here and type endlessly without the same issues, the words spill out one after another with just the odd pause to think or correct.

We all take speech as an automatic process and a something that will be with us for life but that isn’t the truth for all of us. There is no hard or fast rule it could happen that I am the one talking if badly, to my end and you with normal health now, could be the one unable to form words, but the likely hood is the opposite. Being a progressive condition my speech will progressively worse, I fear that the seconds of the other evening will grow to minutes or even to forever.

Looking into myself and explaining to you or anyone else is hard if you have no near experience, the closest I can get is probably to say that it is a little like when you are in a deep sleep and someone is trying to wake you. In your head you hear their words, part of you is trying to answer and part pulls it into your sleep, desperately trying to fit it into your dream, so you can ignore it and muddling it up in your mind, reality and dream fighting each other. If you have understood that part, now add into it that the first part which is answering is distracted by the dream and it can’t get the words out. Now add frustration, then suddenly the dream disappears, what you are hearing makes sense but what is happening has turned to nothing, even the confusion vanishes because you know you are in a void, unable to go back to the dream and also unable to respond to the words you still hear.

I don’t know if it will ever be as bad as that again but the odds are it will and it will get worse. I hope that what I have written make sense to most of you as I feel I am writing about the unexplainable, but I have tried as I always do.


Jake phoned me this morning to continue has story about his drum kit, so my diaphragm spasm hadn’t given me a true escape, just a delay. I now know that the snare drum is the same one as used by the drummer from ‘Metallica’, enough said, I can feel you drifting off already. He asked me is Tracy was in Glasgow just now? That kind of surprised me. Tracy was probably the best female friend I ever had. We met when we both lived in Rhu and is often the way, we met through our children. My daughter was attending the nursery school at HMS Faslane, the children were picked up each morning by the Navy transport and returned at lunchtime. I received a call from one of the teachers late one afternoon. asking if I could take a message to a mother who had just moved in the day before, as her phone wasn’t set up yet. It surprises me still how such a simple act, could have impacted so massively on my life.

Before I met her I never realised that you could just simply meet someone and with in hours feel like we had been together since birth. It is probably fare to say that we changer each others lives in ways that those around us couldn’t understand. Both our husbands were in the Navy and both of us were frequently alone, we filled that void left by husbands, duty and distant families, we took care of each other and supported each other. With the children off to nursery, we would sort out anything that was needing to be done in our homes then meet in one or others houses for coffee, most afternoons we gathered up the children and our dogs and head off to the spit or off up into the hills behind the village. When I left my first husband and went to work at the Ardencaple Hotel, Tracy soon after landed a job there as well and although I was now single and living in Helensburgh, we made a point of seeing each other outside work, going out for evenings together and remaining firm friends.

I new her husband didn’t like me, but put up with me for Tracy’s sake and when I move to Glasgow and our relationship stayed strong, he told me to my face that I wasn’t going to take his wife from him. Clearly he saw me as a threat. At least twice a month we would spend 24hrs together, she would stay over at my house and we went out shopping and clubbing. With me she knew that what ever she did in that time I would never tell anyone. I gave her the freedom to be herself and not just a wife and mother, I gave her the support she needed to grow up and she returned every second of it. We were always there for each other at any hour of the day or night.

I will never forget the phone call the day that she found out that her husband who she had thought of leaving more times than I could remember, was having an affair. Just like my ex he had had several over the years but this one she found out about and the truth tumbled in behind it. As she had supported me, I supported her through the break up of her marriage. By this time the Navy had posted them to Bath and of course she had moved there, she had a job, her daughter was settled in school, so her life was there. We thought about sharing a home but decided against it, work was the main reason, we both had jobs we loved and neither wanted to change it. But still our friendship didn’t change.

While she was staying with me for a holiday, she met one of my friends and started and affair with him, but he was possessive, no matter what she or I said to him, his infatuation with her was becoming destructive. He would send flowers, turn up at her home in Bath, phone her several times every day and then again in the evening. She moved house and I refused to tell him where she was, but he found her. I knew she thought I told him but I didn’t. The last time I saw her was less than a year after that. I asked her to be witness to my marriage to Adam, she stayed in Glasgow with us for a few days before the wedding. Everything seemed normal, she was excited and enthusiastic about all of it. On the day Tracy and my daughter were to me the most important guests and they were fantastic.

Adam and I returned from honeymoon and I tried to phone Tracy, there was no answer. I kept trying, thinking that maybe she had gone on holiday, or was working extra shifts. After a month I stopped making excuses for her and realised she was gone. I tried, I tried really hard but couldn’t find her. We bought a house a year later and moved, taking our phone number with us just in case she wanted to call me. I still secretly hope that one day the phone will ring and it will be her, but it never is.

Jake thought he saw her in the supermarket a few days ago. The person looked as he thought she would now and she kept looking at him as though she wasn’t sure if she knew him. Neither spoke to each other, so I will never know but I have asked Jake that if he should ever see her again to make a point of speaking, I don’t care why she vanished but even 13 years on I would love to see her again. Friendships like that are rare and even if I never see her, she will be a special person to me for ever.