Judgement day 1

…….but how many do I allow for. This is it, I am free of all extra drugs and it is now up to my body to do the work that they have been helping with. I have always hated this point in any illness, it feels as though someone has come along and whipped everything away just for a laugh. Having spent unknowingly the majority of my life with an autoimmune system that is playing by its own rules, all bugs have been hit or miss. I have lost count how many second rounds of antibiotics I have landed up having to take and the colour of what I am coughing up doesn’t fill me with inspiration. On the good side, I managed to go from around 10 pm last night right through until 6:30 this morning without coughing. Even Adam said that I was amazingly silent, no wheezing nothing. Since I woke unable to take a silent breath, I haven’t stopped coughing and the flow is impressive, plus odd, to say the least. All I can do is wait and see and if things show the slightest sign of closing in again, acting straight away.

Everything about today is about getting myself and my life back to a more normal pace and something closer to my routine. I say closer, as I am still in two minds about whether or not it needs changing. I know that my struggling with it could be nothing more than the exacerbation just slowly taking hold, but I can’t be sure. The one thing that I don’t want to find is myself wallowing under a pile of things that feel like they are about to bury me. This last week I stripped everything down to a minimum, enough to let people out there know that I was still alive, but little enough not to tax myself too much. My intention is to step things back up slowly and to allow within it how I feel each day, rather than the rigid this is what I have to do everyday. I know that it is the only way I have worked throughout my life, a constant rolling “To Do” list, but maybe it’s time to make it more a maybe list. It is one of the hardest things to get used to once your health is breaking down. None of us ever want to believe that we are doing too much, we are always capable of more. Having to let go of things, is hard. It doesn’t even change with the size of the task. I doesn’t matter whether it is stopping working or doing the housework or doing twenty minutes more on twitter, they all hurt. Every tiny step downwards is just that, a step that says, you are closer to death than you want to think about.

I realised a while ago that I had to change more than just what I was doing, there was a much bigger task, how I thought about things. How can anyone take two days to file their fingernails? Both hands on one day had somehow become too much and a task that if I look at it that way, just didn’t get done. Slowly those nails grew and grew until they were in danger of breaking, it was only when they did, that I did something about them. So incredibly silly as odd broken nails don’t make you feel good. I had to change how I saw that one task, I had to break it into pieces that let me cope with it and feel good about it, which isn’t that easy. I had to somehow accept that one hand on one day, the other the next, means I can achieve without feeling totally useless. Five nails filed over several hours, repeated for the second hand the next day. If I let myself think of it as pathetic, well that was just how I felt. By switching it around, achieving all the way, one nail at a time, I now have a task that doesn’t daunt me, scare me or even put me off doing it. I am not going to say that it is suddenly a total joy and I am proud of myself for getting it done, but “I” do it and that is the important bit. Even in the last week when Adam has never truly been far from me at any waking minute when my independence was possible, it was important.

Every time that I have gone through the process or reassessing and readjusting to my abilities, it is tough. The biggest thing I have learned from all of them is that feeling of independence and achievement have to be met, without them, it doesn’t work. I know without any doubt that these changes in my life are a long way from over. This first true exacerbation has shown me what my body has lain out for me in the future, it’s one of those hard things to get your head around that that wasn’t it, it’s going to happen and happen again. Life has taught me that when things happen again, they are inclined to also get worse, which in itself is scary. To survive them, I will need an even more flexible routine but still one that I can recognise as one. I never realised when I was diagnosed with any of my conditions, just how much of my future was going to be spent playing psychological games with myself. I am discovering more and more that those games are essential, how I see and feel about things is far more important than the pain or even the lack of oxygen. Anyone can take a tablet or hitch themselves up to an oxygen cylinder. Feeling bad about it, won’t have anything like the benefits that can be found when you can convince yourself it’s where you want not just need to be. I spend every day throwing tablets down my throat, I used to hate every single one of them. It isn’t just a case of getting used to taking them or the relief that they bring, there is now a positive feeling within me rather than the reluctance and even hatred that I felt for them at first. That one I take no credit for, it was something my brain did for me, but it is the same feeling that I can now reproduce for myself, in time, for all the hurdles jumped over or waiting to trip me up.

The most stupid thing I have ever had said to me by the majority of people is “You have to stay positive”. You can not make yourself be positive, if you don’t feel it, you can’t create it. Positive is a collection of things that come together, but we have to create all the elements ourselves. Control, achievement, independence and ability, are the major ones, with loads of tiny specks of others around them. Work on each element as its importance appears and that positive feeling about where you are in life does follow, it’s just a lot of work, but what else do I actually have left to do these days, other than make myself feel better.

Read my blog from 2 years ago today – 24/06/13 – Settled and happy again

I have to say that it has been an unexpected weekend, somehow all of this is bringing us closer, the opposite that I thought might happen as I know Adam and I are at other ends of the spectrum. Yet there is a feeling in each kiss and each word that says ‘I love you’ without the words being said, and when spoken the is a new depth that hasn’t been……

Hello oxygen

I took a booster tablet last night before I went to bed, then lay there just waiting for it to finally kick in and let me fall asleep. I went to my bed about 15 minutes early partly because of the pain I was in and partly because I was just wiped out and Adam was studying in the kitchen, so it seemed the perfect opportunity. For most of yesterday there had been a constant background pain from my diaphragm and intercostal muscles, never quite that painful to make me take an extra pill, but bad enough to make life just that touch more miserable than it should be. Just managing to breath shallowly wasn’t enough to have stopped the muscles from complaining, it does help at times, but yesterday my chest just didn’t want to play, clearly I could breath well enough to get through the day without keeling over dead, but when you actually have to think about how you are breathing whilst doing other things as well, it does take the simplistic angle out of you day. There is something just wrong about having to work on things that we usually wouldn’t even know we were doing, at least my body hasn’t decided that my heart only works when I control it, joking apart there are days when even what should be automatic, seems to become a chore and one that you really have to work on. I think that is one of the things that people who aren’t ill, just don’t get, as when you can do everything, from breathing to running without any thought at all, it really is almost impossible to get your head around the fact that there are people out there who can do almost nothing without an assessment, then a pre-plan and finally a great deal of effort.

No matter how difficult the odd day hear and now is with my breathing, I still have nothing to complain about or even really write about, at least not to compared to some people, or even myself in the past. Yes, I have had a glimpse of my future, but not due to COPD or even spasms, but down to my loosing the co-ordination between being able to breath, whilst talking or eating, it was so bad that I was taken into hospital for nearly three weeks. It all started with a plum, whilst I was eating it I started having problems swallowing it and a piece of the skin was stuck at the entrance to my throat and I couldn’t get rid of it. I tried everything but there it was still there the next morning and my breathing was now getting difficult. I had this idea in my head that it was all down to the piece of skin that I could still feel clearly there, so Adam and I headed to hospital. In the AE department they fetched the skin out of my throat and I expected to be fine. By the time was I sat up on the edge of the trolley, I was in tears, I still couldn’t breath, at least not when I wanted to talk, everything was messed up and my stupid blaming it on a plum was proved totally wrong. I was admitted as it was clear to everyone that something had happened and I wasn’t safe to go home. Over the next couple of days it got worse, I was spending most of my day in bed, to scared to go far from the oxygen that was set up for me. The doctors seemed at a lose as to what was going on and they decided to do the only thing left to them, they gave me intravenous steroids nightly for 4 or 5 nights, by the morning after the last dose, there were signs of things improving, not anything huge, but I was no longer visibly gasping and I was managing to speak more like a human, rather than the stilted robotic result of the previous days and best of all, I was allowed to go home.

When something happens to you once, you fear for ever that it will happen again, before I started having problems with the spasms in my rib-cage and then the tightening and clamping of my entire chest from time to time, the thing I feared most was loosing my left arm again, these days I fear loosing co-ordination again more than anything. Just as my left hand has never totally recovered and is still weaker and has worse co-ordination than before, I have had spells of not being about to breath properly but they have been a case of hours, rather than days, but clearly the damage that was done from any of these things, never actually returns again to perfect. Last night before I went to bed I was again not in total control, add in the pain and I wasn’t exactly confident about how things were going to go, but sleep is so often for me the fixer, it doesn’t cure things but it allows my body to rest and not be forced into doing anything else than it’s basic functions. When I woke at 4:30 am this morning, still in pain and still not breathing normally, I was more than a little disappointed. I went to the bathroom and then headed to the kitchen for a cigarette, yes I don’t need telling, but it does relax me and that was what I needed then. Half way through, Adam appeared, it seems to be we have started some sort of habit, meeting up in the middle of he night to pass a couple of words then return to sleep, I didn’t though. Shutting down your brain is the hardest thing there is to do, especially when the thing you don’t want to think about, is causing you pain and it doesn’t matter how hard you try to breath shallowly, whilst still trying to get enough oxygen, when you have not just your diaphragm but two other bars of spasm clamped across your chest, distraction is impossible. I lay there for two hours, searching for the sleep I still very much needed, but found nothing, just more thoughts, more fear and more reasons not to sleep, so I gave up.

I woke Adam from the settee and sent him through to the bedroom so that he could still get the peace to sleep and he does just occasionally enjoy getting to lie in bed. I never made him move through here, he chose to as his snoring used to keep me awake with results that we were both very aware of. It’s now three hours on from then and I am at last breathing as normally as I ever do, I was right, I needed to be upright. There is one thing that I have learned over the last couple of years, my lungs don’t like me lying down and although I never lie flat any longer, using the elevator to keep the top of the mattress raise, last night it just wasn’t enough. Looking back I should have tired raising it even further, but somehow logic always seems to evade me when I need it the most these days. Although I have now got the much needed oxygen under control, I am still in some background pain other than my now familiar diaphragm pain, strangely mainly in my back, I feel as though someone has been kicked it, sort of bruised if you like, but I am breathing without thought.

I can only guess at my future, but I have a picture in my mind that is all too clear and brings all those things together. All my intercostal muscles clamping like an iron corset, my co-ordination vanishing and every breath having to be thought about doubled by not just getting air, but getting enough to allow my brain to keep functioning. My diaphragm locking in a spasm, causing a pain that makes you not want to breath so there are two instincts working against each other and it all working together against me. As my consultant warned me, my MS could just stop me breathing, long before my emphysema gets the chance to, but that isn’t today so life moves on again.

 

Please read my blog from 2 years ago today – 4/11/12 – The day after

Inside and on the surface I am still in shreds from Thursday nights subconscious scream, facing anything in life that you have so neatly stitched into a corner and buried under concert suddenly escaping, isn’t something that is easy to pull through and re-cage. I didn’t read the comments until this morning…..

Part 2, the feelings

The time spent at the hospital didn’t end with just the diagnosis, I was then talked through the medication and a new type of inhaler that is now available for those with poor dexterity. It is so easy to use unlike a couple I have had in the past, there is a nice large easy to press button which charges it and then you do nothing more complicated than breathing in and that is it done. He was writing to my doctor with the prescription for all my new drugs so I should have them here by the weekend. It isn’t though just a new regime of medication I now have to get used to, but I also have to do physiotherapy every day, once the doctor had talked us both through all that he could, he arranged for us to return to the hospital in 4 months, we then went through to see the physiotherapist. We have been taught the therapy that is required, which is to be a two person effort each day. The day regime shouldn’t take to long, maybe 5 to 10 minutes tops, but then on top of that every second day is a longer more complex set of pummeling exercises. Both are required because of my MS, my ribs and diaphragm have sort of set themselves solidly, so there is little to no movement when I breath, that alone is stopping me get enough air into my lungs.

So between yesterdays post and the piece above there is the full picture as far as what has happened, it is far from the full picture as to what it really means and what will happen to me. I knew before I went to the hospital what the diagnosis would be, there had been little doubt on what was wrong, although the extent of what my MS was doing was a little of a surprise. My MS alone just attacking my ribs and diaphragm is enough to kill me and left alone probably would and possibly still will, physio or not, if I have a bad relapse they could lock totally. For now it is progressive damage, but there is nothing written in either direction, just possibilities. MS can kill in many ways, this is just one of them. I know already that the physio has an effect, not only could I feel that my ribs suddenly moved when I breathed but Adam said he could actually see the instant change. I know that physio can help with these things, but it is palliative not a cure, at its best it can deliver relief for a few hours or minute, as lock down can reappear in seconds, the progress will still continue unchanged and as fast as before. After the treatment in the hospital I woke in the morning so sore that I couldn’t bare Adam doing anything, I know that the first of anything is always the worst, but tomorrow we will start doing what we have been shown, just as we will have to do it for every day of the rest of my life.

We all have an array of things that can kill us, my array is simply easier to see than it is for many. If I continue to smoke, yes, my lungs will give up and they will be the cause of my death from either the COPD or the Emphysema in around 10 years. 10 years is a long time when so many other things could do the job prior to that, there is a clear questions as to will it be worth stopping at all, like most things there is no clear answer, just possibilities. Which is worst, being suffocated by one illness or the next, or the one after that, as they are the choices in front of me right now. How will my body be in 10yrs time when it comes to my MS? I may well be long dead already, but what is for certain is I will be a lot worse than I am now. I think it is fair to assume that I will be bed bound by then, my limbs will be more painful and far more useless. I can also add in that my brain will have probably left the station for good, sending out nothing of any real value.

I am already on the boarder line of being able to cope on the level of MST I am on, any more and it fogs my mind, any less and I can’t bare the pain. Raise the pain level which there is no way around, they will rise and that is a fact, a fact that goes hand in hand with raising my MST. Raise my MST and will I care what is happening any way? With a totally fuzzed out mind I doubt very much if I will be worried about smoking or not. I have few pleasures left in my life as my MS has stolen them all, smoking is such a small thing which helps keeps me sane for now. I always new that the meds I take for my MS will zonk me out in time, raise the MST enough and I doubt I would be able to smoke anyway as I would be gaga or asleep. Nothing in this web of thought is easy, as nothing is actually provable in any direction. Who knows tomorrow I could fall and kill myself that way. Flippant or not there is a good chance that my MS will have made my life totally unbearable long before my lungs will, they are in a race right now to see who can do me in first.

When talking to the doctor he actually never mentioned the notion of my giving up until we were all discussing ‘what next’ and Adam asked the question directly, but even then he showed clear understanding of my position and I felt a great deal of empathy, although Adam made his preference clear, he also said that ultimately it is up to me. Logic shows clearly what my choices are and what I should do if I didn’t have MS, MS has no logic or empathy for anything, it is just what it is and there is no escaping it. At this very second I have a cigarette in my hand and every draw on it is wonderful, what will replace that? Well not an E-cigarette on it’s own, I already own one and although it is so so when it comes to a hit of nicotine, it just isn’t the same. That warm feeling of enjoyment, familiarity and comfort just aren’t there, it is a cold flat taste and the feeling is almost as flat as well. All and E-cigarette can do is hold off slightly the need for a real one, that craving for what has been part of my life since I was 12 yrs old, just can’t be replaced by plastic.

To this point what I have written here was written yesterday as a straight follow to yesterdays post, nearly 24hrs on and an other night to sleep on it if you like and I am still no closer to truly understanding or making a decision. I thought that when I eventually received a diagnosis like this that I would be a mess, tears running and my mind in a spin about every tiny part of it, but I’m not. I haven’t cried one tear for me, or because of the diagnosis, the only tears that have found their way out of me have all been for Adam. It truly isn’t fair that he has to put up with any of this, but he made a bold jump yesterday by telling me that he was going nowhere and warning me off trying to get him to go and give him his freedom and to give him a life, as it just wasn’t going to happen. When I first had MS I had the most terrible guilt as Adam and I had only been together such a sort time and he is 17yrs younger than me, I wanted him to have a life, not to be shackled to a cripple. He told me then just as he told me yesterday, he is going no where, even if I wanted him to go he will be here every step of the way. Like all couples when we married we married for life, believing that life would be a long and happy time, no one expects to find that life running out for one of them and the other having to take over so much to keep them alive. I don’t want my time with this wonderful man to be shorter than it absolutely has to be, but I also don’t want my life to be turned purely into a painful and constant struggle, all made worse by trying to stop smoking, or not having something that simply will make those painful final years that bit more bearable.

The idea of not being here for both Adam and Teressa is hard and yes I want to be with both of them for as long as I can, how to work out which is the longest and most bearable, is an equation that I am finding incredibly hard to work out. If it wasn’t that I love both of them dearly I know what I would do without a single hesitation, I wouldn’t change anything, I would simply continue as is and accept what ever is ahead not worrying about which will remove me from life first. I have to die from something, but I want to live what time I have left still with the little things that make me happy along the way. I don’t fear death in anyway, what I fear is leaving behind those I love, because that feels like letting them down and causing them pain that they shouldn’t have to have. I am the one who lives with pain and causing that to happen to anyone else is unforgivable. But still I am sat here with questions that I simply can’t answer and feelings I can’t put in their place.

So what do I do? Do I do what feels right for me on one level or what feels right on the other? I can’t do both, one way or another no one is going to be happy about the future I have been dealt, but they are my cards I just have to workout what I do with them. I’m sure the answer will come to me but right as this second, I feel like shit! I can’t stop thinking about it all and I am doing what I seem to do naturally, I sleep just so I can avoid it, I suppose the good thing in that is I can’t smoke when I’m asleep.