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┬áday 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…..

Everything is changing

Somehow it is Friday again, I don’t know why but until this second it had felt like a long week. That is honestly not something that happens that often, even with every day being the same as the one before. It actually amazes me just how quickly my days go in and how suddenly it is time for Adam to be home again. I am not complaining, not at all as I know that is part of the reason that I find being housebound that bit easier. I guess the theory that I set out three years ago was true, as long as you keep yourself busy and you have one person in your life that loves you as much as you do them, you can survive anything.

It used to be my greatest fear that Adam would just decided one day that he couldn’t take anymore of my health and that he would leave me. I kidded myself that I would manage, that I would somehow find the help that I needed around the house and that life would go on. I knew that I was kidding myself, but even knowing that I still did it. Despite being generally good at putting myself in the shoes of others, putting myself as housebound and alone is something I find incredibly hard. I have someone in my life who isn’t just my partner but is actually part of me, his not being here isn’t just unimaginable, it feels totally impossible as well. I think the other week when I was really ill was a huge wake-up call to both of us. I got the impression that it was the first time that Adam actually thought that he might lose me. I knew that because he clearly wasn’t going to be convinced on the first two days that things were really bad to go to work. He wouldn’t just not go to work, but he couldn’t help himself but to keep checking on me. I had it reinforced that although I might still want to be independent, I really wasn’t well enough anymore to be so. Up until then my health had been this slow decline, something that yes affected both our lives, but didn’t mean I needed a nurse. Adam had had to take on almost everything that I once did, other than those personal things, but we were still clearly two separate lives that needed each other to be complete.

It was our first taste of what we both silently know is ahead of us in a much bigger and far more stark future than we were at that point ready for. I don’t think either of us had thought about something suddenly wiping me out like that, we had had no reason to. I know personally that I was looking into the future as being this long gentle decline, with crisis situations somewhere out there near the end. I hadn’t at all allowed for sudden and server bouts of being so ill that just walking was a challenge. I never once thought that outside of a normal illness that anyone might have, that I could suddenly be confined to bed without even the energy to want to move. Just knowing that out of the blue that today or tomorrow I could be right back there again, without any control over it in any way, wasn’t something I had ever allowed for in my planned out future. But that is always the problem when you try to plan illness, it will do something to show you your plans are worth nothing. Although we haven’t sat and talked about it in detail, I think it shocked Adam even more than it did me. There has been some small throw away statements that he has made that show that he thought that I might not get better. Not that I was going to die in days, but that I might never be well enough for him to leave the house without fretting about me, even if he was just going to buy a pint of milk.

Personally, I know I didn’t think about much of any importance at all during that week I spent in bed. It would be fair to say that I didn’t actually think at all until the last couple of days as to the true impact of what had just happened. I realise now that it was a real game changer, even if it doesn’t happen again for a year, it has changed everything. It has shown me that my body is frailer than I thought it was. As I said yesterday if you had asked me I wouldn’t have said that my health hadn’t changed that much in the last three years when it very clearly has. I hadn’t held onto the knowledge of the past me, somewhere along the line my mind had airbrushed it and I had just carried on accepting that view. In the last few days, I have spent some time just thinking about the truth, about how weak my body is, how little I can actually do without resting. How much sleep I need to just to have the energy to do nothing. How easily I get breathless and how drained that makes me feel. I have thought about the different area’s of pain and what is behind them and how they alone have changed my life. I have put together in my mind a much more real version of me and, to be honest, I don’t like it, but I needed to see it.

Just because I can now see the truth, doesn’t mean that I am going to give into it. You can know something and at the same time not accept that that has to be the way it is. The difference is I now have a much more realistic view of my life and where it is going and at what pace. I am now more prepared inside myself for something like that happen again and how to handle it. Like everything the first time, something happens it is a shock and you just go with it. I now know what its time scale should be, how I will feel and what it will do to me and most importantly, I and Adam now know that I will get better. I think the biggest change is that I now accept that I can’t push myself day after day to do what I think I should. I have to accept that I can’t keep up the pace every day, every day has to be individual rather than a carbon copy of the one the day before. I have reached a point where a routine is still important, but that routine has to have a flexibility that it never had before. I have to stop worrying about letting people down just because I wasn’t up to doing something on twitter, those that follow me, well they will understand and accept that my output is now governed by reality, not the fantasy that I kept striving to maintain. My body and my brain are a shadow of my past and I have to live within their capability not my imagination.

A week in oblivion has changed everything, everything about me and my future will never be the same. Maybe I needed that wake-up call, the kick to stop and take a long hard look at my life and everything in it and around it. I am fading, I know that it’s not the way I wanted my life to end but few of us have a choice in that matter. Fading or not, I still have the most important choice and it can’t take it away, I still choose to live and to be happy, whatever it does and whenever it does it.

Read my blog from 2 years ago today – 3/07/13 – The family together

Yesterday was a day were in many ways I don’t really know where to start and for more reasons than one. I suppose the first thing I need to say is that it wasn’t just Teressa and Jon who where here but also my son Christopher, even those who have read for a long time won’t have heard me mention him, our story together is a huge complex and very painful one which…..

It’s a killer

Things were bad last night, I found myself searching out my booster pills not long after taking my final scheduled meds for the day. As normal, we were just sitting watching TV, but the pain from my diaphragm was off the scale, not just cutting me in half it was putting pressure on my kidneys and they really don’t like that. I know that part of the problem was being caused by the fact that my bladder needed emptied and just hadn’t bothered to tell me, as when I took my meds I had been to the loo and peed for Scotland. I can remember being told over and over not to sit holding on to urine as it backs up and can cause permanent damage to your kidneys, but when your bladder doesn’t give you the signals required and you don’t have any memory of when you were last there, well what can you do. It is another one of those mixed up situations, affected by all the usual culprits that there is no easy answer to, other than to have my spare brain, also known as Adam, to keep notes of my toilet visits and keep me up to date as to when I should next go and at least try. I stupidly went to the loo at the same time as I took my booster pill, so I don’t know for certain which it was that reduced the pain I was going through, although I would put a bet on that it was the booster as it wasn’t immediate, it took about 20 minutes. Before anyone reminds me that I have a cupboard filled with catheter and that I should also be using the three or four times a day, well don’t tell me, I know this, I just don’t ever seem to do it. I used to think that that phrase about “being our own worse enemies” was a little odd, but that was in the days when whatever I did, didn’t matter, I always survived without any real impact on anything. Now I understand it to it’s fullest, in fact, I almost guarantee it was first said by someone who had a health condition that included a memory of a sieve.

My diaphragm has done this in the past, when it’s at it’s tightest it is like living with a piece of razor wire wrapped around me that has an added twist, every time you move it saws and grinds into your internal organs. Like a lot of pains, it isn’t isolated to the exact source area, when the back of my diaphragm which isn’t alway involved, decided that it wants to play, well that is when I have my biggest problems with breathing appear. If it is just at the front, I have found that hunching forwards seems to allow me to breath more easily. When the back is also aggravated, well think about it, hunching forwards pulls everything in your back tight, add in an already tight cutting pain and I am sure you are starting to get the picture, now add in the pressure coming from my permanently aggrieved guts and my kidneys are immediately in line for being crushed, or at least feeling as though they are.

It has only been in the last five years that I have been having spasms within my body cavity, before that they were totally limited to my limbs and my head. It didn’t matter how painful they were, or how tightly the muscle might screw itself, I knew then that there was nothing other than the muscle involved that could possibly be damaged in any way. Yes, they often hurt like hell but they also responded well to the drugs that were prescribed for me and although not gone, they were under control enough for me to continue with my life, then I had my first MS hug. I defy anyone not to worry when they suddenly find themselves for the first time with a vice closing around their lungs and or over their heart. I was lucky, I knew it was possible but I didn’t have the slightest idea how it would feel, well the word “hug” doesn’t describe it in any way what so ever and on a couple of occasions I was sure I was having a heart attack, which clearly as I didn’t die, I wasn’t. I never once thought that they could actually turn into a permanent feature of my life or that they could actually as I was told a couple of years ago, really kill me. I know yesterday that I put forward the question as to do we get told these things and brush them aside as impossible or honestly didn’t know, well in this case I can honestly say that I didn’t know and I honestly don’t think others do either. With their effects getting more and more extreme as time goes on, I am now clearly wondering what other damage they might do to me before they eventually play their final trick of shutting down my lungs forever.

It is now over a week since I was free of a hug, a full week of having not just discomfort but pain, real pain that isn’t broken at all by sleep. It doesn’t matter if I wake in the middle of the night or when the alarm goes off, I wake to almost exactly what was there when I went to sleep. There does seem to be a pattern settling in, as during the day it remains at around the same level but as I become more tired towards the end of the day, the more the pain increases. Last night wasn’t just yet another example of the pain and the knock-on effects, but also of a string of thoughts that I hadn’t voiced before even fully to myself and it started thanks to that pain over my kidneys, what other damage is it doing? I used to get really angry when I read some of the older information that was given out about MS, mainly because it was all about RRMS, but also because it always told one huge lie, MS doesn’t kill. MS most definitely kill, the fact that the condition that actually caused death was pneumonia or even a heart attack, both of which could be caused by MS due to immobility, but it was never the MS that was blamed. The longer I live with my PRMS and the more that I discover what it can and does do, the more angry I get about that one huge lie and the more I realise just how huge it is. It was only last year that a study was run in the USA that proved that our life expectancy is between 6 and 10 years shorter than those without the condition and they were only looking at RRMS, if all the death certificates actually blamed the real culprit, rather than a secondary condition, I am sure MS would be seen as a true killer. As long as MS is treated as just a chronic, progressive, degenerative condition, rather than a killer, the more of us will die from it. Right now my biggest question is this, if I have muscles in my chest that are managing to tear themselves apart, badly enough to make them bleed slowly and cause permanent bruising on the surface of my skin, some of which have been there for over two years, what damage are they doing inside that I can’t see and the doctors aren’t looking for?

Read my blog from 2 years ago today – 10/04/13 – Where to settle >

I have found myself a new distraction, a reason not to do. The photo’s of Teressa’s wedding. I just can’t stop looking at them, they really do fill me with so many mixed emotions, having not been there I have a lot of sadness still that I wasn’t there to share her day, but I also feel tremendous pride and love for her. How could any Mum not be proud of having such a beautiful daughter? I had already enough things to distract me without….