Breaking down some fears

I had just taken my collection of medications and was sorting out my breakfast, but I kept tasting something odd, Fairy Liquid. I kept taking a mouthful of my coke to clear it, but there it was again and again. I think it must have been my fifth or sixth attempt to clearly it when suddenly there was something small and hard in my mouth. I wasn’t sure which as the coating had gone, but there it was, either my 60mg or 10mg morphine tablet. I now know that the coating tastes typically for all medicine, horrid and totally wrong for anything someone would want in their mouth. I also know that once again I am not swallowing things properly. It must have caught at the top of my throat and sneaked back up from there.

Swallowing for me has always been phasic. I get long spells when I have no issues at all, then suddenly, everything is sticking somewhere in the upper part of my throat. Usually it is slightly lower down, in the pocket that exists in the left side of my throat. Once there it isn’t a danger, but it can be really uncomfortable until the muscles relax again and release it. That is something that can take minutes or hours. Quite often though it catches above that point. I can think I have swallowed it and it’s gone, then suddenly, I have a mouthful of food from nowhere. I had noted recently that there was something new, a new twist if you like. With some foods, especially the noodles I love so much, that sometimes it doesn’t go down at all and just sits there over the entrance to my throat. It has to be light, just one or two noodles or possibly a single small tablet. It just lies there until I work on bringing it back up so I can try again. I guess that is what happened with the tablet, but this time I didn’t feel it. I am well aware of the danger that food holds for me, as there is a constant danger of any of it landing up in my lungs. That danger is amplified by the fact that I also have COPD. Food and/or liquid are a possible danger to everyone who has MS, it is a common problem and holds the possibility of pneumonia for us all. With my lungs not working properly, and not in the best condition, the danger grows.

I have now had two doses of pneumonia in my lifetime and I have no desire to have another, but I know that without a doubt, I will. The only good thing I can say for it is that you are so out of it, that you don’t actually care. That whole week last month that I was confined to bed, not because anyone told me to stay there, but because I simply couldn’t manage to be anywhere else, was a blur. Oddly, although it scared the hell out of Adam, it was strangely reassuring to me. I guess that we all fear being that ill. It had been so long since I had been that I couldn’t truly remember how it felt. I had developed this fear of what my future held, of spending all my time unable to breath and in pain. But what I had missed is that nature steps in and takes you away from it all. Your body might be incredibly ill, but your brain is blissful unaware of the whole thing. I suppose that is already happening to me. It is what I suppose could be phase one. I sleep for ten and a half hours four nights a week, and eleven and a half on the others, yes the change to those extra hours is working and will remain into the future. Add in my nap and phase one is there clear to see every day, over half of every day is spent asleep. I am out of it, away from my pain and away from all my problems. Already nature is protecting me from the worst of it. Those hours of sleep have slowly risen as my health has deteriorated and that is something I hadn’t really thought about. I know that there will be elements of my future that I don’t want to think about right now. But if my body is going to compensate by pulling me into sleeping more, inline with my health, well those fears diminish.

I was woken this morning, at 8:20. Not by my body, but by Adam trying hard to wake me. From the tone of his voice, there was clearly something wrong. In my sleep, I had somehow placed my elbow on the pad that operated the mattress elevator. Quite difficult to do, as the pad hangs off the side of the draw unit beside the bed. The top of the bed was slowly rising and I was completely unaware of anything happening. The same, unfortunately, couldn’t be said for Adam. Once awake and I had lowered it again, I lay there wondering at what point would it have woken me. I was still wondering when the alarm sounded ten minutes later. I actually think it would have taken until I slumped forward before I woke. I was still truly deeply asleep and totally unaware of it all. Sleep is my joy, it is a place that I am content as I feel no pain and I’m not fighting my useless brain every minute. I guess it’s probably happier too, as it can be a stupid as it likes without me telling it off. I fought hard to keep my hours of activity, I didn’t want to spend my life asleep, but strangely you do grow to be accustomed to it and you work your life around it. As long as my waking hours are constructive and feel right to me, will it really be that bad, maybe not.

Please read my blog from 2 years ago – 24/07/2013 – Slowly it happens

I have been in increased pain since early yesterday afternoon, I don’t know what triggered it, all I know is that I am in pain round the base of my ribs and it isn’t going away. Add to that a distinct feeling of I just don’t care about anything and you find a picture of me that says I just want to…..

Don’t get ill

I have for the first time ever asked Adam to not go to work. I have never felt that need before to not let him leave my side, although he has often enough offered. On Sunday morning, I woke with the worst headache I ever remember having, well last night I topped that one. It was just after 11 p.m. when I woke to go to the loo, a problem there is no simple solution for when all I seem to be doing is drinking cold liquids. In itself there is a clue, cold liquids, Adam has no doubts left that I keep throwing temperature spikes. Anyway, when I woke I felt as though someone had been dancing on my brain in stiletto heels and one was still stuck through my right eyeball. I couldn’t get off the edge of the bed, just sitting there knowing I needed the loo, but with no way of getting there as that meant standing up. I don’t know how long it really took me to get there and when I did and sat down, I didn’t want to move again. My body wasn’t so much mine, as some horrid vessel that I was trapped inside. I kept trying and trying over again and again to cough as my lungs felt as though they were underwater and every breath in or out was travelling through that water in bubbles. I felt sick, distant and so far from myself that I was actually scared of heading back into the bedroom. Adam was in the kitchen so I lite a cig in the living room and sat there in the dark, wondering why I had lite it at all, it was the last thing I wanted, not something I ever say. I let it burn for a few seconds then put it out and headed back to the bedroom, I wanted to be without my dressing gown as I was starting to drip sweat, once again without being warm. Waking up at 5 a.m. to find a that a pneumatic drill had moved in on the party and I quite honestly didn’t know what to do with myself.

If I had been able to think clearly at that point I would have spoken to Adam there and then, there was something really wrong and clearly growing, but all my brain was saying was sleep. Right now I am waiting for my doctor to phone back, When I called I knew he wasn’t going to be there, but I was hoping that if I were at the top of his call back list that he might call before surgery rather than after. As luck would have it I found myself talking to the snooty receptionist. Everything about this woman is annoying but her patronising tone is her worst attribute but on I actually removed at the end of the call. I told her that I am having problems breathing, her one-word answer was “Asthma” not even as a question, it was a statement. I clearly didn’t answer quickly enough for her liking as she then said “Do you have Asthma?” I answered “No, I have COPD” and she changed instantly. I don’t know what her problem is but when she seems to think that you have something standard or minor, she’s rude. Mention my MS or my COPD and she’s really nice, but it shouldn’t be like that. She went from snooty to almost apologetic that the doctor wasn’t in until 9:30.

I honestly can’t believe how bad my head was overnight. I like everyone has had headaches, but without any exaggeration this is the worst I have ever known. Until I am told otherwise, between the pain and the way that I wasn’t really making sense of things either last night or on Saturday night, I am guessing that I was short of oxygen. Thanks to the fact that in the UK we don’t have a 24/7 medical service all I could do was wait for this morning. Our doctor surgeries and the hospital services are virtually none existent at weekends and are working on a shoestring. Part of me was screaming that I did need help and I needed it there and then, part of me was screaming I’m not going to the hospital. If I had gone to hospital as I have done in the past for bronchitis, I know they just give me a steam inhaler and then sent me home. How many hours that would have taken as I can’t just go there and come home, I would guess I would have been stuck there until today when they could eventually arrange a stairclimber crew to take me home again. Going to the hospital at the weekend isn’t something I even want to try. It seems to be one of those oddities of life, that it is your health that has made you housebound, yet the most dangerous aspect is when you need medical assistance, finding it is almost impossible. A healthy person is only as far from their nearest hospital and to medical care. For anything from assistance for anything from a sprinter to a broken limb, or heart surgeon who can say their life. I, on the other hand, can’t really say that, the hospital is no further away from me, but it might as well be on the moon when you can’t get there or home again. I didn’t need or want to call 999, you only dial that number when you are in danger of imminent death I wasn’t, but I would then have been stuck, at their mercy.

I needed help, what most these days would be called walk-in help, as clearly I am still alive and I wasn’t dying. In fact, if I were to go back in time to my twenties, I would have just phoned my GP’s number and I would have been put through to a duty doctor, who would have come to me. That was standard NHS treatment, not just for the elderly or terminal ill, if your baby had a temperature the time of day didn’t matter, you called. If I had called last night I would have been put through to NHS 24, a switchboard of people with scripts to read. Yes, I have done it in the past, they normally ask if you can get to the hospital and that’s where you go. The passenger transport ambulances don run at night, but only as single crew member, which means no stairclimbers, a 999 ambulances would have to have been pulled to collect me and take me to what they call minors, where there is a duty doctor. I have to admit to having been just living on a wing and prayer, that this wouldn’t happen, that I wouldn’t need medical assistance outside of weekdays and daytime. My GP is great in one respect, he is happy to listen to me and to prescribe without seeing me, doctors who don’t know you, won’t do that.

Just like at this time yesterday, if I keep my body as upright as I can, I seem to breath without too many problems. I just sat on the settee for ten minutes, leaning forward as I was searching for something on the TV, by the time I stood up, all I could hear once more were bubbles. Cough, and I rearrange them, I still can’t cough it up which is probably why I couldn’t breathe last night. I had pools of phlegm that just bubbled as I breathed, blocking the oxygen from filling my lungs. When Adam ask if I wanted him to stay at home, I for the first time ever said yes. My thinking was that with luck my Dr would call back sharply and Adam could then jump in a taxi to collect it. I am sure that an antibiotic and a nebulizer will sort this out quickly, but only if I get them quickly. Now I find myself sitting here both feeling really crap and guilty that I hadn’t told him to go to work.

Read my blog from 2 years ago today – 14/06/13 – Secondary pain

They call it sods law, I call it B* annoying. For two nights I have climbed, no sorry fallen, climbing indicates real control, going to bed is more a case of my setting up the motion and instinct taking over. But yes it has been two night ………..

I’m ill

All last week Adam was grumpy and rather down, not surprising as he had a rotten cold. I was really dreading catching it, but the days ticked by and as they passed I slowly relaxed and came to the conclusion that I had been lucky and had escaped it. All day yesterday I was fighting with my lungs, there was no comparison between how they were when I woke and how they were when I was sat watching TV last night. The morning was almost normal, just a bit of pain that I kept putting down to the fact I didn’t seem to be able to keep my posture right. In fact, that was how I spent nearly all of the first half of the day, catching myself beginning to crumple and having to pull myself up from my core, over and over and over again. By lunch time I had developed the feeling that my chest had compression bandages around all of it but still the word “cold” didn’t enter my head. Nor did it when I started suddenly drinking gallons of liquid as though it was going out of fashion. By the evening, I couldn’t find any position in which I could sit without incredible pain in the back of my lungs when hunched forward and when sitting back, I simply couldn’t get enough air inside me. I didn’t feel anything that would suggest it, or that it wasn’t just my COPD and PRMS working together. I was totally delighted when bedtime came around, even when I found that the simple vibration caused when just taking a step was enough to have me dreaming about a booster pill. I knew I was a mess and I had had enough for the day.

I woke in the middle of the night, all that fluid that I had been wondering where it had gone, had suddenly decided it wanted to leave. As soon as I pulled myself up I knew I had a headache and clearly had that taste in the back of my throat that said phlegm. I now know it is coming from my lungs, the occasional cough is enough to prove that, but there isn’t any wheezing or anything like that. Once actually on my feet I could feel that ache all over me, on one hand not odd, but somehow different. By the time I woke this morning, all my glands were welcoming me by reminding me of their presence and position. It still doesn’t feel like a cold, but I don’t need any doctor to tell me that I am not well.

I have spent a lot of my life with different lung problems. Firstly, Asthma, which hasn’t bothered me that much since I became housebound. Just the occasional breathlessness when active, if you can call it active. As long as I keep myself warm, well fed and dry, I can keep my other friend bronchitis at bay. Put me in a cold or damp room for just one night and I won’t be able to breath the next day. It is another condition that is on my personal list of chronic conditions, as most winters brought at least one bought, often many more. I, like a lot of other people, found that just having the flu jab, for some reason to keep both bronchitis and colds at bay. Being housebound of course means I can’t attend the doctors to get the annual jab, it also means that I don’t come in contact with sick people as Adam is normally healthy. When I was told that I had COPD and that on top of that my PRMS was doing its damnedest to stop me breathing. I went through a short spell of paranoia about Adam bringing something home. Luckily, he gets the jab due to his work, so I have remained free of any extra lung problems for many years now, but I have always been waiting for it. Being ill on top of a chronic condition isn’t funny, one of the reasons why I fought so hard to stay fit while my body would let me, as when I got ill, I was really ill. When your immune system is busy destroying you, it isn’t that interested in fighting off some bug. Half the time it just ignored it and I have managed to land up in hospital three times with bronchitis that changed into pneumonia. Trust me that’s a condition no one wants to have.

No one ever wants to be sick, but when you are living with other lifelong conditions you actually begin to fear it. The idea of what having a bout of bronchitis on top of my COPD is something I had avoided thinking about too deeply. I do worry about the fact that I spend more than half my life flat on my back, is the perfect position for fluids to congregate in my lungs and to do damage. Like many other things, you never have the correct discussions with doctors when you have them to hand. I never even thought about asking what do I do if I get a cold or have bronchitis? Should I call and get help straight away, or do I wait to see what happens? They aren’t a question I would need to ask if my COPD was further developed than it is, I would have already called a doctor, but I no one can stop my PRMS from constricting my lungs. I really didn’t need an example that should have been in yesterday’s post, in fact, it’s rather ironic this should appear today. I have always said that there should be well-written guides for everyone when they are first diagnosed. Within that literature, I would insist there were flow charts, ones that take away all those doubts and questions as the would be clear if this happens, do that if that, well do this. I am totally convinced that a lot of people land up going through things that could have been avoided if they just had a guide to help them.

The plan for today is to have my shower this afternoon, the way I feel at this second, well I can’t see that happening. What I can see with total clarity, is as soon as I can, I will be going to bed.

Read my blog from 2 years ago today – 12/06/13 – NHS roulette

I so love the British weather, last week it was out to kill me and this, well it’s returned to perfect conditions again. I wish there was somewhere that never got warmer than here, or colder either, well apart from a few days of snow per year, I would be so happy to live there. It seems to be a large part of being human that we are never totally happy with……

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…..