Getting ready

I slept last night, not one disturbance of any sort, just as always happens for the first two nights after I have cleared my insides. I was worried at around 8pm that it wasn’t going to happen as I had thrown my routine out the window yesterday afternoon, for two very good reasons. The first was simple, I was shattered so I moved my nap from 3pm to 2pm, but even though I knew I could have slept a couple of hours, I restricted it to an hour and half, for the second reason. I decided to take the plunge and to get my overly grey hair, back to being purple as I am expecting visitors over the Easter weekend. I have been putting it off over and over again as it had turned into my head from a simple quick job, into a nightmare of a scale that was just out of this universe. I know it’s silly, I have been dying my hair since I was 11, when I managed whilst my parents were on holiday and I was staying with my aunt, it sneakily dye my hair a deep chocolate brown. Well when I say my hair, I also managed to dye the white cotton mats that were sat on the dressing table and some dots on the carpet, while managing not to dye a large disc at the back of my head, to say the least, I was in trouble. Luckily my aunt saw the funny side and sorted my hair out for me, but my parents didn’t find it funny at all as they hated women dying their hair and I wasn’t even a woman, I was just a stupid child. Yesterday, well it was a better result, but I did have a lot of cleaning up to do, especially all around my face, in my desperation to ensure that this time the whispy bits I missed the last time, were going actually going to match the rest, I kind of got carried away. Luckily, I had remembered to use my trick of covering my face and ears in a thick layer of moisturiser before I started, that way I have the time to clean up, before it dyed my skin. These days I have one other prep action to take, I take a booster pill and wait for it to kick in before I even start, when your arms ache just sitting typing, you haven’t the slightest chance of spending half an hour with them above your head without causing pain.

Every simple task just grows, a half hour prediction on a box and the declaration of how easy it is, has to be taken with a pinch of salt then doubled, before you even think about the cleaning up and showering, or the time it just takes to recover enough to be able to get on with the rest of your day. It takes so long and has so many pitfalls that yes, as time goes on, every single task you once took in your stride turns into a monster looming over you. Especially when you have already tried the alternatives, help from amateurs who don’t know what they are doing, or professionals who cost a fortune. The worst thing is that it also takes away that feeling you used to get when you would proudly stand in front of the mirror afterwards admiring your work, now, I give it a quick look, pleased to see no grey but too tired to care about letting the light catch it or to run my fingers through it and watching as the light plays through the strands, lifting the colour to new levels. You would expect that my pride in having actually completed something would be greater, but somehow the pride no longer exists, all I feel is a relief that it’s over and done with. I hate feeling that way, I was a person who took pride in everything I did, it didn’t matter if it was just cleaning something, I would stand and look at it with pride, move around it to see the shine and check it again and again throughout that day, because I could see the full beauty of it, just as it should be in my head forever. When you are too tired to care, too tired to even think about caring, it makes every task somehow flat, without that pride, it is just something that has to be done. Life shouldn’t be like that, but it is just the way it is, yes I have shifted it in some ways to other things and I do praise myself for what I do manage when I feel like managing nothing, but that instant pride, that feeling that I want to look and look again has got lost somewhere along the line. I know some will say that that is because I have no one but Adam to see the things I have done, but that I know isn’t true, as most of the things I took such pride in where things that no one on this planet other than me, would ever know I had even touched.

I was clearly out on my timings for everything I should have been doing, it was nearly 5pm before I started going through the tweets for the previous 12 hours, counting the retweets for the quotes and PSMyWords, a full hour late. It was 6 pm before I remembered I hadn’t had my soup after my nap and I headed to the kitchen to heat it up, something I realised later was totally the wrong thing to have done, wrong because I was then full and sitting on the settee. Posture is something I know without a doubt does make a difference when it comes to how I react to food, sitting here at my PC means I am reasonably upright, something that isn’t really possible on the settee. To make things worse, I decided to treat myself with some coconut rum and milk, something that is filling on its own so I was over full and crushing it all by being slumped. To breath with ease on the settee, I either have to sit forward, hunched over my knees, that way for some reason the pain in my diaphragm seems to lessen at the front, but it slowly builds in my back, so then I have to move back against the cushions with my hand behind me, pushing my ribcage forwards. It lasts for a few minutes then forward I have to go again and so the whole evening is spent, on the move most of the time, but constantly sat where I am without ever being totally upright. Normally on the evening after I have cleared my bowels, is usually more comfortable but my mistake of eating late, left me in as much discomfort as I had been in the night before. I headed to bed with apprehension, sitting on the edge of the mattress undressing them putting in my earplugs, all I could feel was my diaphragm. I don’t know why I did it, but I suddenly put my arms above my head with my palms facing the ceiling and pushed them as far from me as I could. I am telling you now it is something I will never do again, the pain was totally blinding and how I didn’t actually make a noise loud enough to bring Adam running I don’t know, it was like someone had shoved several red hot pokers into my lungs and was twisting them, whilst crushing my ribs just for the fun of it. It did make my cramped up arms feel better, which is why I think I tried it, but even that didn’t make it worth it, as what replaced it was far worse. It something I know from experience that what you gain in one part of you, is normally counterbalanced by something else. Almost every trick there is for breaking spasms or relieving aching muscles will make you pay in some other way, but that is one thing that I will never do again. I sat there for a few minutes as it subsided and returned to the exact pain I had before I tried it. I was so in need of a good nights sleep so like I have done many times before I took a booster before I lay down.

I woke this morning as close to rested as I ever feel and on my way to being organised for Teressa and John to be here on both Thursday and Sunday. I haven’t seen my daughter and son in law since Christmas so we will have our usual day of catch up and with them having both been on a two week flit around part of Europe and also a week in Goa for a wedding, I guess this time we will have a lot to talk about. I still find it odd that all I have to do when someone is coming to visit, is to dye my hair and think about a little makeup, when it used to involve a full spring clean of anywhere they might go, along with hours of cooking. I really do live in a different world these days, in some ways I now do see that I used to go OTT but you don’t know how I wish I could be OTT right now.

Read my blog from 2 years ago today – 1/04/13 – There is a duck in the room. >

My legs are bad today, Adam noticed it on Friday as he asked if I was OK as I seemed to be more wobbly, his polite way of describing what feels to me as a good imitation of a duck. I am often like that late in the evening. I just noticed what I wrote there, “late in the evening”, otherwise known as just after 7:30pm. lol Anyway as I get tireder and towards my…..

A rather smelly nudist

I am on my own today, Adam isn’t back at work, that isn’t until Monday but as today is Friday, he is at college. I am really pleased that he is doing something that hopefully will give him a better job eventually, like many people including myself, who left school without any silly bits of paper saying we have a brain, he has felt held back by it, getting this HNC will make the world of difference to him. For me it wasn’t getting a qualification that made my working life change, it was me realising that if I wanted something I had to show I could do it and if that meant I had to work every hour that god gave, then that was what I did, yes even without pay. Every time I have ever wanted something from life, I have just gone for it and not only grasped with both hands any rope that was there to help me along, but I also never let myself believe that anything was impossible. I got rather good at bashing down doors and making the world let me in and getting what I wanted, but it wasn’t until I reread my post from yesterday, that I realised that I was laying out another battle, one that clearly has been annoying me for a long time. I also realised that for the first time, I was looking at something that I haven’t the slightest idea what to do about it. How do you bash down doors when you can’t even get to them?

I have spoken many times now that part of my writing and being online was originally to raise the profile of people living with chronic illness, not just MS, but any of the myriad of conditions that millions have to live with and how they all impact on our lives. Like many other things in life, I have found myself preaching to the converted a lot of the time, but I also know that I have made some who have never thought about it at all, what reality can actually really be like. It doesn’t matter what issue it is that I write about on any given day, there is hardly a day where someone doesn’t chirp up on Twitter to say either, “I know this, because I live with it too & I thought I was alone” or “Thank you, I now understand my Mother/friend/partner” or “I never knew, thank you writing this”, but how do you pull those sides together and keep them there working together to make things clearer and better for all, when all your strength is taken just writing about it. I so often feel that I am doing the one thing I have hated all my life, talking without doing, but I can’t change the world on my own and I totally don’t know how to from my living room. All I can do is to keep chipping away and just hope that one day the right person will read what I have written and will be able to start bashing doors on my behalf and shoving my words in their faces until the people with power have to change things. Nothing in life is simple, when you are housebound, trust me they became a thousand times harder for a thousand different reasons and if you don’t believe me, keep reading.

I woke this morning with pain in all the normal places and a great desire to get up, get dressed and go for a pee, it was as I was getting dressed, that I really began to notice all truly all the different point of pain. There is one act in life that is always going to be my least favourite, getting dressed or undressed. When you are fit and healthy, you really don’t think about all the different positions we have to get our bodies into to, to just cover it with a layer of material and none of it is easy to achieve when there is pain everywhere. I also know that any time I mention getting dressed that Adam will offer to help me, honestly, well I know we have never tried it, but I don’t have the slightest doubt in saying this, that would make things worse. Just like getting dry after a shower, I know where my pain is at that very second, which means I know the position and the pressure and speed that I can achieve without making things worse. I used to think that washing and dressing was something that I wouldn’t want assistance with, simply because it was somehow too personal, but it isn’t that at all, well maybe very slightly, but it is far more the pain issue that keeps me refusing his help. When I look at all the things that my health has a head of me still waiting to happen, this is an issue that I can’t see a way around, but one that we all have to do, unless you intend to spend your later years as a rather smelly nudist. It doesn’t matter how I look at it, or what clothing there are out there, we all have two arms and two legs that will have to be manipulated so that they can be covered up and we all have to be able to bend and stretch our bodies so said arms and legs can be clothed or washed and dried. What will work one day, will probably not work the next, in fact, as anyone with a condition anything like my PRMS and Fibro will vouch for, how you got them on, isn’t always going to work in reverse when it comes to taking them off again. I gave up buttons, popper, hooks and eyes and zips along time ago, everything I wear has either got a large amount of lycra in it and/or is so big and soft that it should prove to be no problem, but even all that isn’t enough.

It’s another one of those things that seems so wrong and I never understood until I found myself where I am right now, just why so many people seem to wear such odd clothing, especially a lot of people who are in wheelchairs. When I was in my manual chair, I was still lucky enough that my PRMS was spending most of its energy working at either end of my body, yes I could still dress for the office, but I also made a point of wearing the same outrageous clothes I always loved, thighboots, mini skirts and skimpy tops the rest of the time. Now that I have pain everywhere, well I now understand that fashion, likes and dislikes all go out of the window, comfort and ease of access are all that matter. If I couldn’t understand such a small thing when I already lived with a chronic illness, well what chance do those who don’t, it’s a little thing, but if I didn’t get it, what chance do we have in a world where people judge us on our appearance. I hate to think what someone who was interviewing me for a job would make of me know, well I don’t have to think, I know I wouldn’t get a job no matter what it was, looking as I do now. It is another of those things that unless people know, the way we are treated will always be wrong and not because of anything we have actually done, other than to make the best out of a bad lot.

Unless I won the lottery, when I could employ a designer to work on making me a wardrobe of clothes that not only could I put on with ease and I actually liked, I know there is no chance of ever feeling part of the world, outrageous or not. Clothes define us more than we like to think, for 6 years I haven’t worn a single item that has made me feel good about myself, it’s part of the reason I have an aversion to mirrors and I know without a doubt there are millions in a similar position, many still out and about in a world that laughs at them, just because of how they look and with any comprehension of the truth, another wrong that needs to be made right.

Read my blog from 2 years ago today – 13/03/13 – Now or Later >

The start of another day, and it all seemed just all to normal. I have said repeatedly that I hate that word as it normally refers to what is average for the population as a whole, but when it comes to my health at any given point in time, there is no other word to use. Today is normal, not your normal, I will agree but that is the problem, we all too easily…..

It’s more than memory

I’m just waiting for the phone to ring as I have made my phone calls to both the doctor and the MS nurse. Of course, just because it has to be the way my life works, my MS nurse who I normally see once a year and never call, is on holiday today and won’t be back until tomorrow and my doctors call back, well that’s like working out the length of a piece of string without seeing it, sometime today. I really hate this waiting for calls, as soon as I put the phone down, well my body decided that it needed to go to the loo, my brain went into this stupid spin of should I go or should I wait. So OK that is stupid, but I never have the luck of getting the timings of things like this right, sods law always says that phones and doorbells ring when every you aren’t there and available to answer them. This time it didn’t, but that is exactly how my brain works these days, it creates panic points when there is no need to panic at all. It’s odd how when your health goes, your brain seems to want to make your situation harder, it is almost as though there aren’t enough things already going wrong in your life, that it has to start creating them. I don’t know why, but it runs over time with what if’s and what next’s, I guess it is all part of the fact you begin to feel useless and everything is harder than it has to be, so why would anything happen the way you want it to. Don’t get me wrong, I haven’t got the disastrous belief that everything is against me or anything like that, it is just that when so little of what you want is possible and more and more seems to be taken away all the time, well you can’t help feeling everything else is going to go as well, it just a matter of when.

Yesterday I decided that I was right, it’s was time that I asked Adam to help me with my meds, right now I don’t know exactly how we are going to do this, but we have put together a list of what all my meds are and when they are each taken. I can’t see right now what his thinking is or how it is going to make a difference to taking them in the morning as he is at work before I take them but it will make a difference to the evening ones, I shouldn’t miss any of them as he is always in the kitchen in the evening and can easily keep an eye on what I am taking. I never thought that the day would come that I couldn’t do something as simple as take the right meds, I foresaw a time that simply because of lack of mobility that it would be easier for him to fetch them for me, but never that I would be able to be staring at what I take every day and wouldn’t be able to see that I had something missing. Mind you, I never thought that I would be able to add in unrequired or unconnected words to a sentence without being able to see it even when reading it back, but it happens all the time. Well not so much in the past couple of months, I found a new free program called Grammarly it actually constantly checks everything to make sure it makes some sort of sense, I am sure it will miss the odd one, but unlike a simple spell checker it checks that things are grammatically correct as well. I may not always agree with it, but it does help a lot and works with loads of programs, even those you might not expect. If only it were so simple, just to get someone to write a program that corrects all the things I now get wrong.

It is sometimes hard I know for others to understand what is happening inside my head, logic says that all I need are simple reminders, alarms set up to tell me to do things, trays of tablets to take at the right time and so on, but none of that works any longer. It sometimes feels as though I have two brains, one that still works on the logical steps in life, that still believes in writing a to-do list and routines. The other is filled with these huge gaps and voids where everything just doesn’t happen and it whole purpose is to chuck these gaps and voids into the middle of normality. The results, well it’s these blind spots, where I can’t even see what is wrong, occasionally the gap isn’t positioned perfectly and then I have this vague recognition that something isn’t quite right, but I can’t pinpoint just what it is. One of two things then happens, either the misalignment is so bad that eventually reality manages to get through and the error is corrected or the gap settles correctly over its target and the error is either there forever or until something or someone outside of me corrects it. On top of that, well there is what has been a permanent issue for a very long time, where I receive the reminder to take my tablets for example, but I am distracted, that distraction, well it overwrites the reminder and again it is gone. The most frustrating thing of all is the fact that I can write down a detailed description of what is happening, but I can do nothing about it and that isn’t logical.

I am very aware that like everything else in the last couple of months is getting worse and just like all the other things, it is making my life tougher and tougher and is putting more and more onto Adam, who doesn’t need any more at the minute. For about a year, Adam has had an alarm set on his mobile phone for just before 8pm, this is so I take my meds at the right time, but should that alarm sound too soon as I want to watch the end of the program we are watching, or if he doesn’t remind me to go when it ends, I will forget. It only takes seconds, so if he turns the alarm off thinking I have heard it and I haven’t and he is then distracted by something on his phone or laptop, well I just don’t get my meds until he realises, or on the odd occasion, I do. All the prompts in the world, even the human ones are fallible, there aren’t any clear cut answers or simple steps that I or we can take and worst of all, this is probably on the surface one of the smallest issues I have, but very possibly in time the most important one. Pain, discomfort, fatigue or any but one of the other symptoms I could list, don’t affect anyone other than me, right now memory is the only one that affect anyone outside of my body as another human brain, is the only answer that stands a chance of working.

Forgetting things, losing your memory, not seeing things that right in front of you, they are all tiny things that other people brush aside and say “it doesn’t really matter”. That is rubbish, it matters and matters more than you would believe until it happens to you. We are our minds, when they fail, even if those failures are small, they affect everything else, miss a tablet, miss the opportunity to make yourself better for a while longer. Miss a tablet, miss the chance of a good nights sleep, without hours of lying there trying to work out what is wrong with you, why your pain is so high and why you can’t sleep. Miss a tablet, your bowels start to clog and you’re in pain and discomfort for days. Miss a tablet and you rip apart the lining of your stomach, creating new problems that could have been avoided. But it’s not just tablets, it’s showers, it’s food, it going to the loo, it’s all the things that we say people do without thought, trust me without thought we do nothing and I know that for a fact.

Read my blog from 2 years ago today – 8/03/13 – It’s so good >

I sometimes worry that what I write about here can appear to be a somewhat bleak picture of the realities of chronic illness, and to be fair on some levels it is impossible to not paint things in that light. None of us would put at the top of a list of things to achieve in life as being chronically ill and housebound, but it really isn’t all as bad as your or even my imagination………

Communication isn’t enough

Some days you really feel as though you can’t do anything right and nothing is going to go your way, yesterday was really one of those days. It started out exactly as the last few have woken a bit early and 3 visits to the loo within about an hour or so of each other, none easy but a million time easier than it has been recently. Lunchtime arrived and as I stood up I had this feeling of something escaping and it wasn’t wind. I did make it there but from that point onwards, well let’s just say standing up was an issue. The last time this happened was a couple of years ago and it went on for weeks, luckily this time it was just all afternoon, but I must have gone to the loo at least 10 times and every single one of them productive, then suddenly it stopped, but the whole thing was my fault. On Saturday night when I had taken my meds, I had sat for a while unsure how much to take of the new medicine that the doctor had given me and unusually, there was no sticker on the bottle to remind me, just the tiny writing from it’s makers, I trusted my stupid memory and took 20mls and thought no more of it until the constant flow began. I did a quick check online to find that the most I should have taken was 10mls not 20, no wonder it was ripping its way through me or that I had woken early with stomach pains again. It was my own fault and I had done exactly what the doctor was trying to avoid, using high doses of strong laxatives to force everything through me so fast that the result was just what happened yesterday, rather than finding the correct dosage to keep my bowels moving correctly. Last night I took no laxatives or softeners at all, my guts were and are even this morning still screaming their pain at me for what I had put them through and I didn’t want to aggravate them further.

All this constant problems with my bowels are really taking its toll on me, I have been feeling it for weeks now, this constant fatigue that eats away at me, is wearing me down. I know that my doctor is doing what he thinks is right, trying to manage the whole situation, but because he doesn’t deal with many MS patients, well to be truthful, I know when I was diagnosed that I was the first person ever on his books, I don’t know if he others or not, but I suspect he does as there is an MS nurse who works through his surgery, but he really doesn’t seem to understand the knock-on effect of one thing on another. All the progressive forms of MS have one huge thing in common, not just the fatigue but the way that every little thing that happens in our lives affects our health, fatigue is a warning sign, but the real price we pay for anything out of routine and our normality, is a worsening of our condition. It can show itself in as many different ways as there are symptoms, you can even find yourself caught in a mad spiral, where the worsening of one thing activates another and that other, activates the original. Finding our balancing point is probably the most important thing that we can do for ourselves and it took me the first five years after diagnosis, to realize that all doctors other than those who specialise in MS care, just don’t understand that. I think the best example of that is when my GP insists that I needed to go to the hospital for tests, yes I know not everything is down to my PRMS, but I more than they, know that a visit to the hospital is going to make everything else that is wrong with me worse. I will lose my balance point for something I and they know in their hearts, is yet something more that my PRMS is doing to me, the tests are nothing more than box ticking. Harmless for the fit, life destroying for those with progressive MS. Which is why I was delighted when he said he wasn’t going to send me back to the specialists as they too would just keep changing drugs until they found the right ones for me, it is also why I fear landing up in hospital as a patient for anything. Oddly though, this time my body has found something that is almost as destructive, all this waiting, taking odd drugs to my system, testing, hoping, longing and fearing, making phone calls and feeling useless is causing kickbacks all over the place. My balance is so far off now that it feels like it will be impossible to find again, I’m sure I will, but right now my body is a mess inside and out and I am so tired due to the fatigue and the energy that it is all taking out of me and I just made it all worse by trusting my stupid memory.

Adam and I were talking yesterday and we spoke for the first time about both our fears that I might land up spending some time in hospital if this whole thing with my bowels didn’t change rapidly. It was the first time that Adam voiced his real fears of me being in any hospital, it wasn’t for some reason what I thought they would be, I thought because I know what he is like, that he would be worrying about continuing to work whilst managing to get back and forwards to the hospital on buses for visiting. I remember the last time I was in just how drained and tired he became over just a few days and how he went into a panic about keeping the house tidy and having to have it just right for me to come home to, all things that didn’t really matter that much at all. I was sat there ready to tell him this and to say that although I would love to see him daily I knew just how difficult that is when you work and that I would survive if he couldn’t manage to be there. What came out though wasn’t what I expected, he was worried about being able to convince the doctors that I need the high quantities of the drugs that I am on, especially the morphine, or how I live on a tight routine and need to have things exactly as they are for my health, down to my drug routine that probably wouldn’t fit with theirs at all. I hadn’t really thought about it until he said that, but he has a point, hospitals do things their way and they don’t really care what you want or don’t want. The one thing that has always worried me above all others is how on earth I would manage to get the thirteen hours sleep that I need, if you are on a ward, you are lucky if you can get just 5, what with all the noise and the people coming and going, my second was my cigs, especially since using my wheelchair is now so hard. In the last 13 years I have been in hospital 4 times, 2 of them I was lucky enough to get a single room, but other two were hard and I wasn’t nearly as ill as I am now. No matter how they try, our medical system isn’t set up to deal with people like me, people who have a rare and difficult condition that takes over their entire lives, I did think after talking to Adam that it might help him, if I wrote down all the drugs I am on, what I eat when and when and how much I sleep, a care plan if you like. I thought about it and realised that it would make little to no difference, simply because when hospitals are built and systems set up for the care of people, those systems don’t allow for the likes of me. One day the medical profession may get around to talking to each other, but even then, with the pressure on the system and the huge range of knowledge they already have to remember, what is the chances of any of them being geared up for all the rare conditions there are out there? Little to none.


Please read my blog from 2 years ago today – 23/02/13 – Shopping trolley chairs.

I had pushed myself to do as much as I could yesterday in my much shortened available time, as I really don’t like things missed or not done, so instead of completing then playing a game to relax, I had no time for the game. By 7:30 I had made it to the settee, but I was in pain………..

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…..