Who’s job is it?

I guess I should have known that this was going to be an odd week when Adam announced last week that he was taking a week off. He swore he told me before and I equally swear that he didn’t. Nothing new there then, as he is probably right. Another one of those annoying things about slowly losing your memory, you can’t demand any longer that you are right. I used to be the sort of person who could repeat word for words conversations had years ago. I doubt now I could actually repeat one that I had yesterday. It’s another one of those frustrating things that you have to get used to, not always being right. At times, it becomes another of those very personal things like it is some kind of retribution for being a know it all, you become a total know nothing for sure. Last night I was helping Adam with some of his college work, I thought I was on the firm ground as it was basic Excel and I do mean basic. There I was, the once queen of the subject; the person who could build complex worksheet not only filled with embedded functions, swish graphics and programmed to do all the daily work of updating by a simple single click; staring at a spreadsheet unsure how to sort out simple percentages. Of course, I got it right eventually, but I felt so stupid for getting it wrong on my first look. It doesn’t matter that you have the perfect excuse of no longer owning a brain, you still feel as though you are a first class, idiot.

I am as always when Adam is at home, at a total loss as to what day of the week it is, or how to work out time, when it isn’t all done around his working hours. I have been totally thrown at every turn and lost as to even how to get things right with our TV viewing. TV programs are usually either half an hour or an hour in length, so it should be simple. Yet, I have managed to make a mess of that simple calculation three times in the past three days. I have forgotten to take my meds and even struggled with the idea that it is lunchtime. It hasn’t been helped by the alarm clock being set for 8:30 each morning rather than 7:30. Add in the events of Monday and I really don’t stand a chance of being in control of anything. I may have softened my routine in the past month, removed all those rigid timings, but even in its softened form, it and I can’t cope. I have been very tempted to reset the alarm to its normal time, in the hope of removing one element, but I have to admit that that extra hour in bed is really nice when I get it. All of them are such trivial things, the kind of problems most people and even I several years ago would have loved to swap places with those I faced hourly. These days, they are major disruptions to my life and hard to get my head around. Once again, change, even such tiny ones just aren’t something that I can manage without it exploding into a major disaster of some kind in my mind.

I think that it was on Sunday that I woke from my nap to find Adam sat here at my desk. To my horror, he was cleaning it. Most people would be grateful of such an act, he was being caring and helpful. I saw someone making a mess of my life. He was moving about all those tiny things that have to be placed exactly where I last saw them, just so that I know the world isn’t ending. I sat here, once I had removed him from my space, shifting things back to where I thought they had been. Moving them over and over, trying to find the exact scatter pattern of pens and cream bottles that lurk to the left of the screen. Shuffling papers, and pushing the keyboard from side to side, then adjusting the screen, that I knew had moved, be it only by millimetres, it wasn’t where I left it. The whole time I was wound up to exploding point. Not meaning to be ungrateful, but so distressed that you would think he had removed everything on my computer hard drive. I can’t control things like that. I wish I could, but I can’t any longer. It has been on a downwards slope for ages and although I know that Adam understands, it doesn’t stop me afterwards from feeling really guilty over my behaviour.

Losing control, whether it is minor or major, is really hard to accept. I need my life mapped out, I need to know what will happen next and where it will happen. Which is part of what I was trying to get across yesterday. I know some took my words as being totally about euthanasia, it wasn’t. In fact, the majority was about knowing the details of what and where my later months or years will be spent and how and who will care for me. I have like every other single person out there lived for years, knowing that any minute I might find myself in the hospital. For me, it holds an extra trauma. A problem that is so huge that I actually fear it more on the how will I manage than what could be the medical reasons for being there. Just as much as my surrounding, I find strangers hard to deal with. If they are here, here in my home, well I manage far better, but still find it really hard. A couple of years ago, I found myself having to be visited by the district nurses three times a week. Thier fleeting visits always left me unsettled and at times distressed. I know that without a doubt that that situation will happen again, as there is a list as long as my arm as to why their presence could be required.

My need to be able to plan and prepare for what I know is ahead is based in the fact that I know I will be a lot iller than I am now. Knowing what the possibilities are as far as even my care, might just make it all that bit easier. I want to know what aid is available, the actual people I know isn’t possible, but just knowing, having a ladder of people who can be contacted for this or that reason, would make me feel more secure. Knowing what the possibilities are of pain control and other medical interventions that are available to me at home and what point that care has to be moved to a hospital. Knowing what aid is available for my care at home. Despite Adam being here, what care can I still have from the NHS to make his life easier. Would there be respite care? Can I stay here right through to the end, or is there hospice care available should it be too difficult? Where would that be? What are the costs, as we can’t afford anything really? The list of questions that haunt me is huge. Their worst side is the distress it will all cause me and what my reaction to people and places by then. One question especially haunts me, if my bizarre reaction to change gets worse, what then, how much would it change all of it?

As I said yesterday, I don’t intend to die any time soon, but I want peace of mind about what will happen in the future. When you know how you react to the unexpected, being able to put things in place so that I have the time to come to terms with it, could change everything. Not just for me but also for Adam. I know he already stresses over the idea of my going into hospital, partly because of this. He has already told me that he worries how he will manage to get it through to the Nursing staff and Doctors that I don’t deal with change at all. That my routine has to be stuck to, as throw it into disarray and I will be highly distressed by it all. There doesn’t though seem to be anywhere to get these questions answered. Nowhere that I can contact to start making arrangements for what I know is an unknown future, but one that I desperately want to clip the thorns off, for both of us. The closest that I have managed to come up with is to write a detailed care plan, but even for that, we would need some medical input and some of my questions answered.

It seems so wrong that all of this should be so difficult. After all it isn’t just for me, it is for the benefit of the NHS as well. Without a way of getting all of this sorted out in advance, some way of putting my mind at rest and with preparation time to get this stupid brain at ease with it, I will be a horrific patient, not on purpose but because it’s something I simply can’t help. My doctor is a really nice guy, but he is busy, far too busy without me wanting what in reality might be hours of his time, not in one session, but still time I don’t think that would be spent doing what his job is. But who’s job is it?

Please read my blog from 2 years ago – Unpredictable

Yesterday was my day of atonement and boy was I paying for every bit of Sunday! While I was writing my post yesterday I actually thought that I might just have got away with having a day….¬†https://livinginalimitedworld.com/2014/08/05/

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…..

The price is never right

All to often it takes something major to happen for us to realise it has been building up for a long time, yesterdays vertigo was one of those moments. It wasn’t until I was sitting quietly half watching some stupid comedy program, that I started to put things together and to make a little more sense out of had happened that morning. As I said yesterday I knew before I ate all I did on Christmas day just how yesterday was going to go, if only my taste buds had been having one of there lets kill the flavour days, it wouldn’t have happened at all, but they didn’t and I did. Eating to much always brings on and intense feeling of nausea and dizziness, but yesterdays when it hit me with it’s full force, it wasn’t totally on track, it wasn’t an attack of just dizziness, but vertigo. There is a distinct difference, dizziness is an internal feeling, like you are the spinning object, vertigo is when you are stationary and the world is spinning, both make you feel sick and both make you feel unsteady on your feet, for me though it is vertigo that holds the greatest danger of falling. I have never worked out how it is you can sit for ages feeling terrible, but then in a split second, staying where you are is impossible and bed is the only option, what changes I haven’t the slightest clue, I just know that that is what happens.

I had noticed that in the last few week or so, I had been having mild spells of vertigo, enough to make me take sudden sideways or backwards steps when either walking or just standing. Like all symptoms that belong to all versions of MS, vertigo comes and goes, you can go months with a symptom not being there or appearing for a day then vanishing again, so it turning up wasn’t really a surprise. I can’t remember the exact day I noticed it but I do remember that I have had mild bouts or just over a week, when you are used to walking in reasonably straight lines, to suddenly finding yourself swaying off to one side to stop yourself falling, you notice. Oddly I often loose my balance before I am truly aware of the feeling that caused it, I can only guess that they happen instantaneously. It is like being hit with a hammer of motion sickness just because you are walking and worse still, sitting in a motionless room that suddenly starts to swim, when you have poor eyesight it is also very easy to blame your eyes. Like yesterday it can become so intense that you are left feeling that death at that second would be preferable, anything other than that intense nausea and inability to make the world stay still. The more intense it gets, the more you feel like your brain is going to explode and you simply can’t bare to keep your eyes open, closing them doesn’t stop it all, but at least you start to feel as though you are a little more in control, you need as many signals as possible that you are in fact motionless. Sitting is good as you can feel the chair under you and of course the back to some extent, but to really make the world stand still you need to feel as much contact as possible with something that can’t move, hence the desperate need to lie down, you need that contact from head to toe.

Vertigo is very much part of MS, but for me I know that I have a double issues with food playing it’s role, I also know that regardless of what ever it was that kicked it into action, it will be with me for a while. The next few weeks will see me being even closer to walls and walking with even more care, which now that I know I have to do it, isn’t an issue. I guess I will just have to go back to being careful with what I eat, last night I did have an extra meal, but I didn’t have breakfast or loads of Orange juice, not a normal days food, but that bit closer and today, I’m not wonderful, but I’m OK to get on with normal life. It really stinks not being able to push the boat out as far as others do at this time of year, as to me food and Christmas go together, a link made in childhood and one I find impossible to break. It is the one time of year when you buy and enjoy the best of everything there is and to me that means not just flavours I may only ever afford once a year. I even remember the year that it happened as even as a child I avoided sugary foods, the type that uncles and aunties thrust at children expecting total glee, received a somewhat glum face from me. by the time I was 7 my total hatred of ice cream was well known, but still the chocolates were bought and half heartedly said thank your for. It was that years Christmas day that my mother found me happily eating an olive, one she had bought to put out for visitors and like most parents never thought her children would actually eat. When I asked for an anchovy, she told me I wouldn’t like it, but she was so wrong, it was delicious and I ate it with relish and had to be stopped from eating any more, but it also turned into a game, of what will Pam eat if we give it to her. The answer was almost anything that children are supposed to not like. It was the day that I also discovered soused herring, caviare, blue cheese and even malt whisky, mind you that was a mere sip, the only flavour I didn’t like was my Great uncles cigar, which caused huge laughter as I choked and spluttered on a lungs full of smoke. I never looked back from that day and I have spent my entire life discovering and enjoying almost every savoury food I have come across, the foods that many won’t eat and even more, including myself, can’t really afford outside of special occasions.

I am a huge believer in listening to our bodies, they normally know what we need and what we don’t, but I am also a great believer that life has to have those time when pleasures, good for us or not, just have to be enjoyed. One more Christmas is behind me, one more day out of how many where my life has had restrictions pushed upon it and one more were I said to hell with it, I’m a long time dead, the Christmas season is all about living in the excess of enjoyment, whether there is a price to pay or not.


Please read my blog from 2 years ago today – 27/12/12 – Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd……