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/

Settling back into hope

The internet proved it’s power again when it comes to finding, buying and receiving something you need, the Psyllium arrived yesterday afternoon, now that’s service. It may have arrived, but the problem now is how to actually get it inside me. We ran a couple of tests last night to find that my idea or yoghurt is a none starter. I hadn’t realised that it was going to react with fluid and turn into a sludge just quite so quickly, I had mixed in about a third of the dose required into a small pot of yoghurt only for it turn into an inedible sludge in seconds. Both Adam and I tasted it and it just didn’t work, the Psyllium isn’t quite as tasteless as the doctor said, I can’t describe what it tastes off, but it does taste. The second test was to mix it with diluting juice, we had a bottle of Apple and Blackcurrant in the cupboard so I used it neat and suddenly had something that looked like pink papier-mache, also inedible and incredibly claggy as it stuck so badly to my teeth that I had to go and clean them to just get rid of it. It was Adam when he was cleaning up after my test that discovered another quality of this stuff, let it sit and it will go solid, but has an odd slimy texture once set, as one of my tests did set totally. I checked online and found some suggesting you just mixed it into water and drink it as quickly as you could before it turned into a sludge, not much help as I guessed after adding water to a small amount of powder that it would need a full half pint of water and the taste would make it hard to swallow. But I have a couple of ideas, sparked by a couple of blogs, first to turn it into a milkshake, that made sense if you use something to flavour the milk, the thickness would feel right as most milkshakes are thick. So I have bought some coconut milk, some skimmed normal milk and desiccated coconut, The idea is simple, make it as cold as possible, whizz it with the drinks blender and swallow, if it’s really cold and the taste right it might not be that bad. If I can get the flavour right and add the desiccated coconut to cover some of the textures it might work. The other flavour I think might work is vanilla, but to me I think the key is flavour and cold. I am also going to try making Scottish pancakes with it, getting the amount of flour to Psyllium right is the key but then I could cover them with butter and jam, then hopefully enjoy them for my breakfast. If the pancakes fail, then I could make Blini’s but that requires messing about with yeast but I think might be more successful. It’s clearly a matter of working with the stuff until I fully understand it.

When I was searching for way to actually get Psyllium into my diet, the other thing I found something that made a lot of sense to me, they all suggested that you don’t go headlong into trying to take the full amount to start with, but slowly increase it until you see what it is going to do in your body as we are all different. There is, of course, one other problem, the fact my stomach doesn’t like large amounts of anything, how it is going to react to trying to down any of these things quickly I don’t know, I am already thinking that whatever way I take this stuff, it isn’t going to be the whole lot at once, more spaced out over the day. There is one other danger here I just thought of as I was writing, I can’t deal with extra food over and above what I eat already, even though this is a supplement, it may well mean that I land up removing something else from my diet to make space for it. I guess time will tell. I know whatever I manage over the next few weeks it is going to be slow as one thing I have learned about my PRMS is I can’t do anything quickly, it is a creature of habit and if you push it, it pushes back so I have to be careful as I don’t know how it will react to this stuff. There is nothing saying that it should cause a problem, but then again there is nothing out there really about PRMS as we are a rare bunch, I can’t even be sure that anyone with PRMS has ever taken this stuff before so it’s another suck it and see situation. That is also why I decided when I had time to think about it, that trying things one at a time was probably the best way to go, I know that peppermint oil does nothing to me as I have taken it in the past so I am safe to throw that into the mix without thought, but I am not keen to try the antispasmodics until I have settled myself on the Psyllium

It strange how just knowing something has a possibility of being beaten actually had on you. I think I had got to the point where I was resigned to the fact that I was going to land up having a stoma or at least part of my intestine removed, so there was a huge relief when the Doctor said it wasn’t going to be the answer and that there were possibilities that might not cure but should improve the situation and then took the time to go over them with us. It’s odd, but all the doctors I have met in my life, it has always somehow landed up being the doctors who are not specialists in my condition. It was an ENT specialist who provisionally diagnosed my MS, he couldn’t be sure, but he took the time to sit with me, go over what he knew and what my MRI showed, I remember spending about 20 minutes with him crying my heart out, believing that my life was over despite him telling me over and over that it wasn’t the end and he was going to send me to see the best man he knew when it came to MS. I got that same feeling on Tuesday, to get the attention from a surgeon, who clearly felt that I had been let down by too many people, to take the time and go over things that really should have been tried before I was even sent to see him, well, he is now on my short list of good guys. The rest of that day and yesterday, although exhausted, I was on a high, I had hope back in my life and the problems and difficulties ahead of me just didn’t seem to matter. In fact, it went further than that, the pain that I have lived with for so long suddenly had a new feel to it, it wasn’t any less painful, but having that hope has changed how I reacted to it, I felt for the first time as though I was going to get some control over it and some of my life back. Even now sitting here unable to find any comfortable position isn’t destroying me in the same way, it’s odd, but that hope that this just might get better, has reawoken something in me that I had slowly lost in the last few months, myself.

I know that none of what we are trying might not produce the perfect outcome I would love, I’m not that stupid as to build this into a miraculous cure, I do realise that I probably will never be totally free from it, but if it only makes a small difference, it will be worth it. I guess we all get worn down by things that show no signs of improvement or that our doctors just don’t seem to be able to get to grips with, but this has been the first one that has destroyed so much of me, so far. I add the so far, because I know that my future will eventually be filled with those incurable and unchangeable things, but this has even given me some hope that they too won’t turn out to be as bad I can imagine.

Read my blog from 2 years ago today – 21/05/13 – Lost somewhere in my mind

There are times when you feel great and totally on the ball, nothing can stop you and life is not living you, but you are living it. Then with crashing realization you note all you have done all day, is screw things up. I thought those days were over when I was no longer required to write long……