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 ……

Not tonight, or any night

I lost it last night, I simply exploded and went to bed with steam still coming out of my ears and tears rolling down my face, I know that isn’t like me and luckily so does Adam. Adam had been out for most of the day, his sister had organised a get together between him, her and their mother, it is something that started years ago after his grandmother died as we all used to go and see her on Christmas day. Clearly I couldn’t go, but that is something I really don’t mind any longer, just because I am housebound doesn’t mean Adam has to be and them coming here, well it would mean a huge amount of work for Adam and stress for me. Adam left at 2pm saying he would only be a few hours, I knew that that meant at least 7pm or maybe 8 as none of his family are any good at time keeping and nothing ever seems to work on the time scales they plan. It was supposed to be a Christmas lunch, a little early, but that was how it was described and despite the fact that when I was made redundant and we could no longer afford to give presents, I knew that he would come home with some sort of gift from them, for him. I should say here that I have made it more than clear over the last few years, that I don’t want any presents and I will not even accept them, as to me it is too painful to accept without being able to give, it took some time, but that message was finally accepted. That though has nothing to do with what happened last night.

Seven o’clock came and went and when the phone rang at 8pm, I wasn’t really that surprise, Adam was just calling to remind me to take my meds and to say he would be home before I went to bed. I took my meds and after the house being so cold last night I thought I would switch on my electric blanket, just to take the chill of the bed, then settled myself in front of the TV to enjoy the rest of my program. Just after quarter to nine I heard the door being opened and I shouted hello as I always do, it was clear by the length of time it took him to come in to the flat that he had something large with him, which he took directly into the kitchen, before coming through here to have a chat about his day. Despite having a longer nap than normal yesterday afternoon, I was still really tired and if I am honest, I was a little annoyed that he hadn’t come home just that bit sooner. I of course wanted to have just a little bit of time with him after not seeing him at all day, he had done his usual on a Sunday and had slept all morning and on into what was basically the last possible minute, before having to get ready to go. We talked for a few minutes but I really had to get ready for bed and I got up to start my normal routine, just before I headed to bed I went into the kitchen to put something in the bin and he followed me, as I was heading back towards the door he pointed out the present he had come home with, there sat on the floor in the dinning area was a brand new printer.

I lost it, on the surface that sound a bit odd, I realise that, but there was several good reasons behind it, including the biggest ones, my PRMS. I was tired and being faced with one thing I totally can’t deal with, change and this to me is huge change, wasn’t the brightest thing for him to do. To explain briefly, we have never had a printer for several reasons, first we don’t need one, in 20 years of having a home PC, we have only ever on a couple of occasions actually needed a printer. Like most people the answer to that is to use the one at work with permission to print off what is normally one page, the length of a business a letter. Secondly, we have absolutely no where to put a printer and we don’t have or want WiFi, so it would mean more wires and more hassle as our router has no more spare LAN ports. The only place that this, now here printer can possibly go, is in the dinning area of the kitchen, an area already over run by Adams piles of stuff that he doesn’t know what to do with, but won’t throw out. It is also an area that I have been fighting with him for years over as to me it should be totally clear to be used when needed, at the drop of a hat, not after a major relocation of rubbish to the bedroom. The fact we don’t eat there doesn’t matter, it should be perfect and ready to use all of the time. Then there is the cost of paper and ink cartridges an expense we have never needed and now more than ever, I also know without a doubt that Adam will print off things that don’t need printing, meaning not just cost but more useless bits of paper to be put into his already huge piles of stuff that shouldn’t be there. But that wasn’t why I lost it!

I lost it because of the fact I was exhausted and more importantly it is change! The damage done to my brain means I can’t deal with change at the best of time, add in the rest and I wasn’t just ready to explode, I did. I couldn’t believe that he sprung that on me, especially at that time of night as he knows better than anyone that it wasn’t going to go well. If he didn’t know it had been bought for him, well he could have left it between the two front doors over night, or until he came home from work today when he could talk to me calmly about, rather than throwing me into a spin that I had no way to get out of. In a split second I had gone from half asleep and desperate to get into bed, to a raving lunatic who wasn’t even able to talk about it and we parted, him into the bathroom for his shower and me back into the living room where I chain smoked three cigs in a hope of calming down enough to be able to go to bed. I had already lost two nights sleep, I just couldn’t afford to loose another because I couldn’t shut my stupid brain up. Luckily there was something on my side and that was I had tweaked my meds last night to ensure I slept well, I had taken and extra 5 mls of my Amitriptyline and turned my G & T into a double, add in the nicotine and I actually slept reasonably quickly after managing to stop the tears that had of course appeared just to complete the picture of a real idiot.

It is really hard when your mind takes over your entire person like that and I can hear the minds of people who know nothing about life with PRMS or even all forms of MS, thinking that I was acting like a petulant child, on the surface that would be a great example, but that child can stop it if they want, I can’t. I knew what was happening, I even said to Adam “if you had shown me that in the morning, it wouldn’t be so bad, but to drop this on me at this time of night…”, clearly I knew, but there was nothing I could do to stop sounding and being so wound up and so angry, which actually makes the whole thing worse. I was out of control and I knew it, that is probably one of the scariest things that can happen to you, to be aware of what is going on, yet totally unable to stop it. For me, maybe not others, I would prefer it if I didn’t know it was happening, if it was not just out of my control, but out of my head. Having the worst memory on earth that you don’t even remember not remembering, would be easier to deal with than having emotions so out of control that they are fighting inside of you, with you standing in the middle of them unable to do anything. I can fully see why people would find that impossible to get their head around, as I know without a doubt if someone had told me 30 years ago that that could even happen, I wouldn’t have believed them, yet here I am living it, not just last night, but again and again, through out my adult life and it doesn’t get any easier, just worse. Once your body has triggered all the different chemical reactions that go with fear, anger and confusion, then through in a handful of frustration and logic doesn’t stand a chance, any more than someone trying to calm you down, even yourself.

This morning it is done and forgotten, the printer is hidden and Adam is at work, I guess he eventually clicked as to what was wrong with me and that it was out of my control and I wasn’t trying to be unreasonable. I guess we will talk about it tonight and yes, now that the printer is here, we will sort something out, there will be a compromise or deal somewhere, there always is. What ever it is, it will include a reminder about not surprising me with change, even the smallest one and especially not ones as huge as a printer.


Please read my blog from 2 years ago today – 22/12/12 – One Year on 

Well I have made it, one complete year to blogging! When I started this I really didn’t think I would be able to come up with enough to write about in one blog far less two, or that I would be…….

Don’t go there

Distraction, seems to be the name of the game today, anything that my mind comes up with is suddenly a valid reason to not do what I am supposed to do. There are two types of lack of concentration, one belongs to my mind, as in the one I have today and the other belongs to my eyes, that’s when I see something and just have to check it out, regardless of everything else. In some ways I prefer it when it is in my mind, this one feels more natural, the type of lack of concentration that we all live with through out our lives, it just severally amplified. In the past it was more controllable as in I would think of something and make a mental note to see to it later, these days I still do that, it’s just later is now only seconds rather than hours, the time ratio seems to be screwed up. The problem is though of course as all of us with memory issues, if I don’t do it straight away, I either forget forever or at least I think I do, or at until something major reminds me. That is one of the issues with memory, when you forget, unless someone else is monitoring what you are doing, you don’t know if it’s just you forgot or is it that you never even thought of it in the first place, you don’t normally forget that you forgot. Slowly life is getting more and more confusing.

It may not sound like much but when your mind gets into a spin about something, it really is impossible to stop it questioning and questioning itself until you feel as though you are spinning round with it. For some people I know all those memory tricks and safeguards work well, but as I have said many times, they don’t work for me, I seem to have this blind spot that treats anything other than my once perfect memory as an insult and something it is just going to ignore. I can still see my work PC, the entire screen frame was covered in sticky notes, all there to help me get through my day, but all totally ignored even though I couldn’t work without seeing them. I also had so many alarms set that I got the point where if for some reason I was running behind, I would be almost in tears as everything was shouting at me and I couldn’t get the concentration just to complete the task I was on, without being told over and over about the tasks still to come. Living inside a brain that just doesn’t do what it once did, is at times highly destressing. I have lost count of the times I have wound myself up into a complete mess just because I can’t find something, or work something out that I know is so simple. I guess that it is no surprise that MS and Parkinsons share a lot of symptoms, what a lot of people who don’t have either can’t understand is just how our brains work as they go into free fall and just how difficult it can be to pull yourself to a halt and move on. I have to say that is actually far more upsetting than just forgetting to do something or loosing track of what you are saying or even thinking.

I think the first sign to me that something was wrong with me, not just my memory was when it went into one of those flat spins and I was sat totally terrified and unable to move. I still remember just how scared I was as I didn’t have the slightest idea where I was or what I was meant to be doing and I was actually in my office at work. The office had been reorganised over the weekend, I knew what was being done and where my desk was to be, but when I arrived I found things hadn’t gone to plan and my desk was in a completely different place. When I sat down at it I was lost, it was as though I had never been in that room in my life, as though I had worked into the wrong place and I wasn’t meant to be there. When I stepped out of that space, all was well, but when I sat at my desk I couldn’t stop shaking and I was truly terrified as I couldn’t deal with not knowing where I was. On one level I knew where I was, logic said this is your office, but on the level that matters the one that we judge reality on, I was in an totally alien reality, somewhere I hadn’t been before and worse still, I didn’t know how to get back. I know it is hard if this has never happened to you to actually be able to understand, trust me it is also something that is really hard to describe and to tell anyone as you feel as though you are opening a door of lunacy that can’t be closed if you speak about it. I know from that day that people can’t get their heads around it, I couldn’t hide how I felt, you would have to be the world best actor to cover that up, pure fear is recognisable to everyone. I tried to explain it to my assistant, but she just kept looking at me as though I had totally lost it and went and told my boss, who equally looked at me as though I was mad. I spent 4 hours sat at my desk holding onto it occasionally or pinching myself, trying to find something that would let me move on and be part of life. I lost count how many times I left my room and walked round other parts of the company or went outside for a cigarette as every where else was normal, it was just my office had moved to hell. It has happened several times since then, sometime my mind has added in an other dimension by trying to tell me where I should be, like very helpfully suggesting I was in the wrong era and I actually belonged back in world war two, but how ever it appears, it is incredibly frightening. We all trust our own minds, as it is us, so to find it is lying to you and that is building something that doesn’t exist, is highly confusing. The worse the confusion is, the more it tries to create a reality that it is happy in, just not the one that it sees and knows is there. I have no idea what triggers it or what ends it, but what I do know is no one once they have been there once, would ever want to return.

As a teenager in the early 1970’s like many I played around on the edges of the drug scene, I quite openly say that I tried LSD several times, but I mention it now as it doesn’t matter what freaky things that it might do, it has nothing on what your own minds can create or destroy with ease. The good thing about LSD is that you come down from it and arrive back safely in reality, when your mind destroys reality, you don’t know if you will come back, you could be stuck there forever. Neither I or anyone else can jolt me out of it, it seems to be something that so far has sorted itself and at worst had lasted about a day, but as with everything else in PRMS I can expect it to get worse in the future, I honestly fear that happening more than I do of loosing the use of all my limbs. Thanks to TV I have seen similar things happening to people with dementia, Parkinsons and Alzheimer’s, people totally lost to reality and living inside one of their own, the damage being done to my brain, must be similar in some ways and yes is totally in line with what PRMS does.

Our minds are somehow capable of doing what ever they want without our permission, they can forget, confuse and even create without us having control of any of it. If you are just forgetting the odd thing here and there, well you are normal, that horrid word again, normal what ever that is, but when it goes out of it’s way to make our lives difficult well it’s no longer funny. I am never sure if getting glimpses of what this illness can do to me is a good thing or a bad one, but what I do know without a doubt, being forgetful and having poor concentration, is something anyone can live with, no matter how annoying it might be. When it comes to the more sever things it can do, well I don’t want to go there again even for a visit, to go there and never come back is something I don’t want to even consider. There is nothing I have ever known like that clawing fear and a confusion so intense that you fear your mind is falling apart and that the future holds nothing that will ever be real again.


Please read my blog from 2 years ago today – 3/12/12 – Accepting Christmas and more

Monday morning and I woke to two legs in spasm! Since Friday they have been bad again, I had been lucky and they had settled over November just the odd spasm, rather than having the odd period of normality. All weekend they have been driving my nuts again, no position to sit or lie in where they…..

Facing the truth

I had to laugh to myself last night when Adam suddenly asked me where I had put the stuff I had bought to fix the toilet roll holder which is handing off the wall in the bathroom. Not since the day I told him I had bought it, about three weeks ago, had he even mentioned it, so there was no doubt in my mind that that meant he had read my post. I had hidden it in one of the draws in the living room so that he couldn’t do his usual, hide it under the kitchen table in the hope that out of sight meant forgotten. He said he wanted it to be on the kitchen counter so it would remind him that the jog needed doing, but it wasn’t done last night as once discussed what needed to be done, he seemed to go off the idea, instead he started working on changing over the electric can opener, that was supposed to have been done a couple of months ago. At least it is one job done of the list, but I couldn’t not tell him when he sat down the rest of the evening about a tweet I had received following my post about the jobs not being done, it said: “Pamela, if a man says a job will be don it will be, he doesn’t need reminding every 6 months”, of course I got it wrong three times, which kind of spoilt its humour. I am just hoping that this is the start of not just the short list of jobs that are waiting to be done, but also the longer one, some of which have been put off for years, but as long as the jobs which stop heat loss from the house before the worst of winter hits, I will be happy.

The spasms in my diaphragm woke me this morning, I went from sound asleep to not quite sitting up in bed, more curled upwards in bed, as always my first reaction was to look at the clock then to try and work out what woke me if it was the alarm. I had barely turned my head toward the clock when the reason made itself known, there was no doubt at all as to what had woken me, as I lay back it cramped in harder, almost as though it wanted to remind me that horizontal isn’t good. I didn’t listen, it is one thing that I have learned to ignore over the years, warnings that try to stop me from sleeping, there was only half an hour to go so I was prepared to just lie there and wait. The alarm sounding proved that I had actually drifted back to sleep for a while at least and to my surprise the pain had gone. I had great trouble getting myself dressed today, for some reason I had left my pyjama trousers in a muddle, not there normal position on the floor that requires no more effort than to simply put my feet into the holes left by them the night before and then to pull them up. No I had left a muddle and one that when you are no truly awake isn’t the kind of mind test you really need, I tried to fix it and made it worse, landing up with one leg inside the other and no brain to workout which. Getting agitated is never a good way to start the day, but I honestly couldn’t sort it out, everything I did just somehow made things worse, at one point I was sat there almost in tears as I couldn’t believe that a pair of trousers were getting the better of me, so I stopped and sat there for a minute, just thinking, well trying to. Eventually I worked it out and feeling as stupid as possible, but at least dressed I headed to the loo, somewhere I was desperate to get too, probably part of the reason I got so wound up.

I have noticed it often in the past year or so that I am slowly getting more and more wound up by things, as I said the other day frustration is something I deal that well with, but when like this morning it moves rapidly past that point where I can logically pull back relax and try again, well the result is tears. My emotional controls have been shot for a long time, but as I mentioned recently, they seem to be getting closer and closer to the surface. To want to cry just because your trousers are in a knot is pure madness. It is beginning to feel like the slightest thing is becoming a reason to just gush water from my eyes, I lost count the number of times that I felt them starting while we were out on Thursday, luckily I had the strength to pull them back and to move on, but I was terribly aware of them, especially when we were chatting to the doctor whilst waiting for the ambulance. I got into a couple of mental knots, when I couldn’t make my point as my brain would only come up with one really bad example, the frustration of that added to the pressure I felt as I had a tame doctor willing to listen, plus the pressure of just being out, was a disaster waiting to happen. Luckily Adam was there to protect me and he did so several times that day, but it has made me face a fact that I have been hiding form, even though I now see that Adam was very aware of.

When the ambulance had arrived to take us to the hospital and we were doing our usual of trying to talk them into letting Adam come in the Ambulance with me, rather than having to call a taxi and having to catch up with us, I found my self saying that I needed him with me not because of my physically state as they thought, but I need him with me because I can’t cope mentally without him. I remember saying it whiles looking at Adam and felt the tears starting to form as I realised just what I had admitted. Looking back Adam has know it for ages, he always takes time off when someone is going to be here, or if I am going anywhere, he doesn’t like leaving me to deal with people, because he knows that I so often can’t. It is a hard thing to admit that you can’t deal with something as simple as an Ambulance trip from your house to the hospital, simply because you get agitated and panicky, because your not at home. I knew perfectly well that that was the truth, probably as long as Adam has but I just hadn’t admitted it and until you do, well it’s not real is it. Just like my total inability to take a shower or my night time medicines without him being my personal nagger, he is also my personal defence unit, my additional brain and my physical prop when needed. A couple of days ago someone on twitter thanked me for adding agoraphobia onto the list of hash tags I put under my links to my blog, I did it a few weeks ago when the possibility of having to go to the hospital first appeared in my mind. I didn’t put it there because I think I am agoraphobic, but because I suddenly understood it, maybe not fully, but well enough to realise it is as much a limiting illness and any other chronic condition. I can go out there by myself, but I know without a doubt that I would be so lost, so confused and so wound up that I wouldn’t survive long without Adam beside me to reassure me he is there as my voice and my brain when ever they choose to disown me.

Admitting the truth about anything that personal is always going to difficult, none of us want to admit that we are a shadow of the person we once where, which is madness. No one would take a second thought about having a plaster cast, or using any aid once there is no other way, be it walking stick or wheelchair, so when it is our brains, what is so hard about just saying I can’t do this alone, I need others to help me. The stigma is huge and that is something that needs breaking and not just in two, but into a million little pieces that can never be reassembled.

Read my blog from 2 years ago today – 14/11/12 – Who am I now?

Last night I found myself going over and over the same question in my mind, probably a question we all ask ourselves at times and probably one we should ask more often, “Who am I”. Having declared so strongly just a few days ago that “I am still in here”, it suppose it was the logical question to follow it. I don’t think……