Stoic or stupid

I just made a mistake, otherwise known as breakfast. Less than 10 minutes from swallowing my meds and eating my breakfast and discomfort has changed to pain and I am getting really fed-up with the whole thing. There is an odd thing in life that I was first aware of just days after my first son was born, we forget pain with amazing speed. I suspect it is another one of those things that are hardwired into our brains as if we couldn’t forget it, we would do nothing, I for one would have given up eating years ago. Seriously though, it is something we all do and there has to be a reason behind it, I know that if I can get just a few days peace from the pain inside me that I am a much happier person and it isn’t until it returns that I remember with clarity what is so awful about the whole situation. Those days of peace seem to wipe clean my memory and I develop an attitude of this is OK, I can manage this, just like it used to be years ago when there would be weeks between bad spasm and I appeared to be fit and well, my memory of the flares and progression would vanish. Somehow I have held on to that ability, even if the time when I am free of something is just a few hours, my mind seems to wipe it out and I return to being myself the one who wasn’t scared of taking the next breath or twisting to reach something, even occasionally the one who could walk and still look like a human. This morning when I woke there was discomfort, no pain, just the crushing pressure that never leaves me in peace any longer and I didn’t give it a second thought. I got up, dressed and set about my day, once Adam had left for work, I went to the kitchen to get my meds, collected my breakfast and headed to the settee to sort out the programs I want to record this week. Not for a moment did pain enter my head until I was almost finished and was ready to head back here, then the pain hit and everything from the past few days flooded back in as though there hadn’t been any time without it.

It may sound like something that would be a joy to have, in some ways it is, but it is also the reason why I hate doctors, well not so much them, but the fact that when I am face to face with them, all the reasons that took me there have vanished and I just can’t put the passion of how it feels into my words. Many conditions don’t show themselves in every minute of every day, so much so, that I actually wonder how many doctors actually see patients who are displaying their symptoms while in their consulting room. I have actually built up the huge reluctance to actually seeing any of them face to face, it is actually now so bad that just like the other night when I couldn’t break the pain even after taking all my meds, that I was more willing to take an extra dose of Morphine, rather than pick up a phone and talk to one. I was terrified that they would come out to the house or worse still, send an ambulance to take me to the hospital, only to get there and find it had all settled again and I had nothing to show. I know that some of that is down to the fact that I wasn’t believed for so many years, just for that very reason. By the time I got to a hospital for tests, usually weeks or months after my GP asked for me to see a consultant, all my symptoms had died down, as the flare was over. When I know that the pain normally last just a few hours and it settles back down to just the remaining discomfort with small peaks of pain, well I am sure that my reluctance to ask for help even when it is at it’s worst, is understandable.

There is one more factor that I believe plays a huge role in the whole thing, I think the longer we are ill, the more accepting we also become. I know without the slightest doubt, if I had been in the sort of pain I was in the other day just even 5 years ago, I would have called an ambulance, convinced I was dying. It is one of the things that is so wrong with chronic illness, we develop this attitude of “I don’t want to make a fuss”. It starts from the second we get our diagnosis when we know that we are going to spend the rest of our lives ill and that the only way anything is going to change is downwards. There is something in there that etches itself into our brains, something that says we have to be stoic and bear what is ahead without giving into it. In the past, I have put this down in part to my upbringing, all those years when I wasn’t allowed to be ill and I was taught to get on with it, but it actually goes much deeper than that. I don’t know exactly where it comes from, but there is a huge dose of, if they can’t cure me than I have to survive it, some call it strength, but I question that as well. Is it strength or stupidity to put up with something that is unbearable? No, they may not be able to cure us, but surely if they fully understood just how bad it is they might be able to do more to help with it. It is really hard when you have spent as many years as I have just dealing with it all by myself, to reach out and ask the professionals for help, especially when you know that the truth is they can’t really do that much, other than maybe take some more of the pain away, something I did myself.

I know I have asked this question before, but when is the point that you stop dealing and actually make that phone call? No one has given me parameters within which to work, points that when crossed actually mean that you shouldn’t work it out yourself and do the sensible thing and scream, loudly. I almost fear actually telling them what happened this weekend as I am sure the next words out of their mouths will be, “Why didn’t you call?” Well, how many reasons would they like?

Read my blog from 2 years ago today – 27/04/13 – 12 hrs and counting

It happened! That thing I’ve skirted around and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just…….

Surviving love

Life can be a real strain at times when you are living with a mind that seems to have a perverse joy in tripping you up all the time. I am in one of those phases where I am spending more and more time simply frustrated with myself because I just can’t follow through with a simple thread without getting wound up in it. It doesn’t matter if it is just in conversation or finding myself unable to complete a task, I keep finding myself unable to finish what I have started. Adam has always been the type of person who doesn’t like things being pointed out to him, which with the age gap and difference in life experiences often is very difficult for me not to do, when you are comfortable with the person you are talking to it is especially hard to be guarded all the time and not simply let your mind run your mouth. There have always been and I suspect always will be times when tact has gone out the window and I hear what I am saying at the same second he does. Having been a manager and with a reasonable understanding of different management styles and personalities, I often find myself trying to help him with situations at work where he has become wound up by the behaviour of his manager or someone he is working with and I do my best to explain what I believe their thinking and actions are really about, whilst trying to calm him down and not make any of my guidance sound patronising. Over the last few months, his stress levels with work have been through the roof, something that if you read back over the last month you will see clearly the knock-on effects. In the last couple of weeks, everything has been rapidly improving because we have spent long periods talking and going over both our lives together and his work situation. It is because he is now so much calmer and dealing with thing so much better that I actually feel able at last to write about this as I know if I had before that he would have read it then bottled it all up again out of fear of putting stress onto me.

When your mind isn’t quite what it was and you know that without any malice or even any reason behind it you can become wound up, not quite shouting but forceful in your speech without hearing, feeling or even comprehending that it is happening until much later, being a confidante, is hard, incredibly hard. It meant that for the first couple of week when we seemed to do nothing but talk, I had to put a lot of my energy into monitoring myself, whilst listening and responding with thought to what had actually been said, rather than just letting my answers flow. We needed to listen to each other, something I think we both had not really been doing for a while. When life centres around what my health is doing at that moment, both of us as people have at times, vanished and us as a couple, well we didn’t always exist. Like millions of couples out there we were coasting and for me that meant life was easy, but for Adam it was stressing him even more, as he rightfully felt that everything was on his shoulders. It wasn’t the way it was planned or even thought about, but it was what happened because I was so caught up inside my illness and he was doing what he thought he should. It is hard for me to write for Adam and I don’t intend to, this is really for all those husbands and wives who are ill and find themselves feeling an odd combination of guilt, reliance and love for the person who they adore, but can’t show it in the ways they used to.

There were a couple of occasions recently when simply because I had reached the point of exhaustion, that I knew my tone was scalding and judgmental, neither were the desired effect but they happened and I later had to apologise only to have Adam say that he knows it’s not me, as if it were, well he would have been gone long ago. It doesn’t matter how much they understand what we do and say thing that aren’t really in our control or that they know without a doubt that we aren’t that snappy, rude or demanding person who just sits there doing nothing, I realised in the last few weeks, that I had stopped saying sorry. Somewhere along the line, probably because Adam kept telling me I didn’t need to apologise, I stopped. It wasn’t until we both stepped back and took a long hard look at us, each other and ourselves that I noticed it, I had allowed my disabilities to take over, it rather than me, was living here with the person who did everything for it. Other than when he brought me something, I couldn’t remember the last time I thanked him for doing the housework for me, or the washing or any of the other things he now does that used to be my jobs. I know that just like the “sorries”, he told me to stop thanking him and just like the “sorries”, I did. I had also stopped even trying to not snap, or to be abrasive, what my brain did, I did and I carried on without doing anything about it. Between the three of us, me, my illness and him, we had pushed each other away and let my illness win and it happened without either of us even seeing it.

It is incredibly difficult to live all the time trying to control the uncontrollable, but in the last few weeks, I have been doing my best to do just that. I haven’t achieved my goal of being human with an illness, rather than just the illness all the time, but I have realized that I have to keep doing that for as long as I can, not being easy isn’t an excuse, it’s a cop out. Yes, I have to still stick to routines and I have to keep my world as stress free as I can, but that can be done and still remembering that my carer is also my husband and he has every human emotion and feeling that he always had, even if I no longer do. Temporal lobe damage is a fact, it means I will never be the person I was or able to do the things I once did, but I still have enough control to be able to show I care more than it might appear that I do. It is so easy once you are this ill, to just slip into routines that you don’t intend and to not notice the importance of the small things that lets other know just how grateful and appreciative of everything that they do for us. I have already lost control of many of my emotions, I react in ways that I wouldn’t have done years ago and I will never have that control back, but I do have the ability to say sorry even if I am not allowed to use the word itself and we all do.

When your mind feels as though it is no longer yours, making mistakes in simple social responses and reactions will happen and we can’t change that. When your body is always in pain and as useless as a burst balloon, it will let you down and embarrass you, it will mean that you can’t do much of anything of any use to anyone and we can’t change that either. But we can remember for as long as we can that the people around us, especially those who care about us are humans with human feelings and we have to remember to treat them as such, for as much of and for as long as we can. To those who are our carers, please don’t bottle things up, we are fragile but we don’t break with the slightest knock, talk to us if we annoy you, hurt you or put more on you than you can really handle alone. Love can be shown in a million ways, but when it is hidden behind illness, from either side of that barrier, it means we have to try that bit harder to still be people and to make sure our love is felt, as it is the one thing that really can and does make a difference to our lives.


Please read my blog from 2 years ago today – 27/02/13 – Which are worst 

The appointment for endoscope has arrived, it is on the 14th of next month. At least with this one there is now need to drink huge amounts of nasty cleaner, I just have to not eat for 4hrs, which I know I can do with ease. Unfortunately it is an afternoon appointment again……….

Dealing with feelings

The house is so cold, yet I keep hearing on the weather forecast that it is warm for this time of year, usually without them clarifying that they are in fact talking about London and the far south as always. It is odd how that annoys me, as I never watch any of the so-called Scottish channels, they drive me up the wall with their small town attitudes and they’re stuck in the past profiles. Sorry but I really don’t care who won the ‘Mod’, or what happened in Ballater yesterday and if I hear one more person trying to draw comparisons between now and the battle of Bannockburn, I think I will explode. Honestly, you can be a proud Scot without wearing tartan, dying your hair ginger and draping the Soltar over your shoulders. All I can say is thank God we have Sky and that we can choose which versions of life we prefer to live in. I guess that is one of the things that truly divides us from previous generations, we have choice over how we want to live, who we want to be grouped with and what we make of our lives, we are not dictated to by the vagrancy of birth. Even now, I still have all those options open to me, I would go as far as to say that if there has ever been a good time to have a serious chronic illness and to be housebound, this has to be it, it may not be perfect, but we all still have free choice and possibilities open to us. Just 60 years ago we would have been shoveled out of sight and dismissed as not worth making an effort to help, beyond nutrition and hygiene, which is exactly what happened to my grandmother. My grandfather divorced her when she became chronically ill, I don’t know what was wrong with her, I have asked but the answers were always the same, no one really knew. He bought her a house and supplied her with a nurse, but none of the family were allowed to see her again, not that she lived that much longer, only 5 years or so. I used to hate it when people said to me that I should count my blessing, probably because I didn’t really understand the saying in it true sense, as to be able to count our blessings, we first have to have lost something life changing. I know it is the proud scot in me that makes me angry with the weather forecasters, stuck in their cupboard in broadcasting house in London, their worlds are as narrow as the studio they work in, to them like most people, their life, where they live and what they do, is where the world starts and ends, so it’s odd that it has taken me to be housebound to really start to understand the extent of the world we live in and blessing that we all really have.

I was feeling sorry for myself yesterday, yes I am human, I do have days when all that whirls around in my head is why me, what did I do to deserve this, there isn’t a person on this planet who doesn’t have days like that, just as we all have days where the world is filled with flowers and butterflies that no one but we can see. It can be hard when you are sat alone in your home, cold and in pain, just wishing your day way, as you know that it will change when the front door opens and in comes the grumpy monster from work. Adam comes home every day with this black cloud and lightning bolts over his head, but it makes me laugh as, stomps around the kitchen swearing at himself and getting even more angry over stupid things, like his sleeve being stuck to his hand as he tries to take off his jacket. I know that within 10 minutes of him leaving the kitchen and putting away his outdoor clothes, then slumping on the small settee with the belt of his jeans undone and his hands up behind his head, that it will all start vanishing and he will then be home with me for the night. For me it was a day where that was all I was waiting for, all that I looked forward for, it doesn’t matter how busy I keep myself or how well planned out my day, once you have slipped into that feel sorry for yourself slot, climbing back out is hard. Unlike Adam I can’t stomp around the house slamming doors and turning the air around me blue, I don’t have that coping mechanise in me, I am a pusher, not a stomper, I push myself and I push myself hard.

I don’t know where it came from or why I even did it, but it has always been my answer for feeling sorry for myself, I start pushing my abilities. It used to be doing a workout, or a frenzy of cleaning, anything that would make my muscle ache and meant I was too busy to allow myself to feel down. I used to push myself for days, not hours, not allowing myself to feel anything mentally and it worked in its own way, but with that option gone, all I can do is to push myself to do things faster were possible. We all have our own coping mechanisms and those I have seen or read about mostly seem to have a physical aspect, whatever the action is, it comes down to distraction and controlling the release of our feelings, so we can work our way through whatever it is. It is very ease once you spend as many hours as I do alone to start over thinking everything, to invent things that aren’t really there, or to blow things up from minor to major. Routine and distraction can only go so far and once your concentration levels are low, slipping off into thought is amazingly simple. Every one of us looks back on our lives and compare what we have now, to what we had and then we project that into the future, you don’t have to be disabled or ill to do that, it’s just human. I like anyone can list the things I have lost simply due to everyday life that hurt me the most and yes, most of them still hurt, but then on top of them I can add what I have lost due to my health, but the real issue is that no matter how positive your life, or how much you have in your life that is good, there will be times when it all gets just that bit black.

For me now, the best way to bring myself out of the low times is to bury myself in the things I love, to watch my favorite TV programs, especially history documentaries, they always put my life into perspective. It’s hard to feel sorry for myself when I compare my life to that of someone in the trenches of world war 1. I guess it is still distraction, but it feels kind of tame compared to lifting weights or doing sit-ups until I can’t move, which would now be less than one. I guess what I am trying to say is that low days happen, sometimes they might even group themselves into a few days, but don’t write them up as depression, they are just the things we all have to work through so that life can go on. The real trick is to work out what works for you, for some even wallowing for a while is correct, but don’t let it hang around too long, as the truth is life goes on, so why not make it the best we can.


Please read my blog from 2 years ago today – 29/10/12 – Strange day.

There is a great temptation today to simply have a rant about Twitter as my account was suspended yesterday evening as I had unfollowed a large number of people who hadn’t followed me back, apparently this is against their rules and well my account suddenly went offline. The system they have actually……