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/

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 > http://bit.ly/10RSk1A

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….

A medical miracle

I had a bad nights sleep last night, I still can’t put my finger on what originally woke me just after midnight, but I was up again at 2am and my back was killing me. At that point, it was high up and followed exactly the line of my diaphragm, a booster pill and a cigarette fixed it well enough for me to sleep until just before 7am, when I woke for no reason I can think of with pain right across my lower back, bodies can be so annoying at time.

I got angry with Adam last night just after he came home from work. He had been home about half an hour and we were watching the end of Hollyoaks, yes I know it’s meant to be a teenagers soap, but it so silly that we love to watch for the often stupid storylines and the realities of life that they just love to ignore. I think for me the best stupid one was when they had a character who was in a wheelchair, but constantly appeared in places his wheelchair just wouldn’t have taken him. Stairs seemed to be no issue what so ever for him and frequently went to the nightclub which had no lift and home by himself, to a flat with no lift, despite being a paraplegic. Anyway I digress, one of the cast in the story has just announced that he has MND or ALS as they call it in the states, something which should be interesting in “Hollyoaks World”. For some reason, this triggered a memory for Adam about something he had read or seen somewhere about work being done on mice to find a cure for Alzheimer’s and he started to tell me about it. For the first few years after I was diagnosed, both Adam and people I worked with kept telling me about all this work and success that scientists were having with research on conditions that had cross over symptoms to my PRMS, eventually it began to drive me mad, just as I am sure that it drives many others. Like it or not, there is a fact that any work being done at this second is never going to make the slightest bit of difference to me. I can say that with a large degree of confidence, it is a simple enough equation, for research to be turned into a treatment takes years, often 10, 20 or more, then getting that treatment rubber stamped for use on humans can take just as long, if not longer in the case of some. By the time they have gone through all of the systems and red tape, I will be long dead and once dead, none of it can help me at all. As soon as he started to talk I cut him short, as I just didn’t want the slightest chance of having to spend the next few months or worse years, hearing about more so called breakthroughs that mean nothing, other than fantastic news for those not ill yet. I even admit to getting angry when they talk about these breakthroughs on TV, as to me what they are actually doing is giving people false hope and sending people running to their doctors demanding things that don’t even exist yet. Even if the work is at the point that they are starting human trials, you can’t get on to a trial just because you ask or even demand, you only get to be part of a trial by invitation as every medication you are on or have been on, all have to be taken into account, the people they need are in a very small band, people they find by contacting specialist centers. I know because that is how I got the chemo drug Mitoxantrone that I spoke about yesterday, it was an unlicensed treatment in this country and I got it by luck, the luck that I was in the right band, at the right treatment center. I didn’t have RRMS and my late diagnosis meant that my drug treatments had been limited, my bad luck put me in their bandings, which was my good luck. My luck continued as it worked for me and I was also lucky that I didn’t develop leukaemia, something they didn’t know at the time, but there were a list of things that could go wrong and I had to sign to say I knew that but I was willing to take that chance. It may have changed my world totally and I got a huge benefit from it, but it is now a medication that is banned because of what they learned during those trial.

I don’t think it matters what your condition is, I would put money on it that there was at least one person you told about your diagnosis who turned round and said, “well it’s amazing what they can do these days”, I heard it so often that I wanted to scream. When people read daily in the newspaper about what our scientist are working on, it can appear that almost every condition in the world is already cured, or will be cured in the next 5 years. It is all part of that myth that we all grew up with, that our doctors have the answer to everything, well they do if you have something simple that would probably get better by itself in time, but they don’t when it comes to chronic illness, if they did, there wouldn’t be millions of us right now living with them. I know that it is reported on so much for a whole host of reasons, from back patting to fund raising, but the people they are out to help, are actually the people they hurt the most by telling them about it far too soon. By painting their picture, what they are really doing is painting a false picture for those who don’t understand and then jump to ill-informed conclusion that if we are suffering still, we clearly aren’t either getting the right treatment or aren’t doing what our doctors have told us to. They build up false beliefs and false hopes, two things that make our lives harder, not easier.

There is a limit to how many times you can take being faced with questions that start with “Why” and always contain the pointed word “you”.
“Why aren’t you getting better?”
“Why do others get these cures and you don’t?”
“Why don’t you demand these drugs?”
“Why aren’t the doctors helping you?” Why, why, why, they just go on and on and it doesn’t matter how often you answer them they are always followed by the classic, “Well, I saw it on TV or read it somewhere……”. Living with a progressive condition that is taking your life away second by second has enough second missing without haveing to lose even more of them answering questions caused by badly reported stories of cures and breakthroughs. There have been the odd one that has been clear about timings, but the fact is that people only read and take in what they want to, so when you or someone you love is ill, you are of course going to pick up on the words of hope and ignore the words of truth. I am totally sure that those who report these things equally don’t want to give false hope, or make the lives of those who are already ill any harder, but the cold hard truth is, they often are.

No matter what the research that Adam has come across about how they might one day be able to restore the memories of people with Alzheimer’s, although PRMS and Alzheimer’s share many symptoms, how we lose our memory are actually quite different and that is another thing that families and friends don’t always fully understand. I have always believed that whatever our individual conditions that there is so much that we can each support the other with, as solution to symptoms are often the same, whether we have Arthritis or MS, we struggle with our hands, but that doesn’t mean our medications are interchangeable. It doesn’t matter if we are in a wheelchair because we are paraplegic or have MND, the problems that life in a wheelchair causes are universal, but when it comes to how physio or adaptations required to make life better, the differences are suddenly clear. I suspect that more similarities in our treatments will grow in time, but for now we all have to live in this world and it is a reality that is often cruel and hard, yes we all need hope, it is one of those things that gets us through, but the cruelest thing you can do to anyone is give them false hope, especially I believe the false hope of a medical miracle.

Read my blog from 2 years ago today – 8/04/13 – Day on day > http://bit.ly/ZhHoYA

I’m really lost as to which day this is, I know it is Monday, but which one and the position in the month I have checked many times today already. It is Adams birthday and our wedding anniversary later this month. I can’t manage the huge gifts of later years but I want to get something for him even if it is small. I never used to have a problem of thinking about things like this….