Fiddly bits

It is very easy in life, to just get comfortable, with things in our homes and lives and never even think, about changing them. Sometimes it’s because we think we have found the best there is, and at others, we’re just comfortable with what’s there, yes, it might be tatty, but it’s doing its job, so why bother changing it? I had for a while been intending to buy a new sleep mask, but for some reason, I just kept forgetting about it. The one I had still blocked the light, it was just that the edges were fraying and the elastic had turned rather slack, after months of use, it was overdue replacing. I had been so impressed with the one I had, I didn’t have the slightest doubt about buying an identical one. I wasn’t looking for it, but I noticed that some packs came with a free set of earplugs. I’ve tried many different ones, and although similar, these were a slightly different shape, from those I used, so worth a try, especially when it wasn’t costing a penny. They arrived yesterday and when Adam came home for lunch, he opened the package, which was once again beyond me. I understand that packages need to survive the postal system, but do they really need to be so tough? Who do they have working in the Post Office these days, gorilla’s with extra long nails? Once open he switched them over for me. leaving the new ones in place and ready to go when I went for my nap. Boy, what a nap that was. I couldn’t believe how I never heard, even the muffled sound of a single car, and the fit of the mask was so comfortable, I was simply stunned by the difference. I have to say, it has made me start wondering about some of the other rather tatty looking objects I use daily, simply because I always have, maybe, it’s time a few of them were changed as well.

It may have given me a great sleep, but it didn’t do anything about the pain I was in yet again from my stomach. I really am beginning to believe that half of what is wrong with me is coming once more from my guts. Clearly I’m guessing, but if I am in pain all night, the fact that I am waking up, uncovered or squashed into corners, says that I probably am, I won’t be getting a good nights sleep. Yes, I’m asleep, but what I am questioning is its quality. During the day, I am constantly on the move, twisting and turning, in an attempt to let whatever is inside me, to pass the area it’s causing pain in. It would be a miracle if it wasn’t disturbing me in the same way at night, which would explain, a whole list of things that have been happening recently. Just over a week ago, I made a new batch of Psyllium pancakes. I had deliberately made them slightly bigger so that I was getting a large dose from each one. Over the previous month, I was having to eat two instead of one, just to make things move at all, proving that in that batch, the dose was too small. On day 4 of eating the new ones, I went to the loo without any problems. Then again on day 5 and 6, on day 7 I suddenly found myself going twice in one day, something that is totally unheard of for me. Then yesterday, once more my bowels moved first thing in the morning, followed by even more intense pain. If I had been passing tiny quantities, I would be just shrugging the whole week off, but I haven’t. Granted my stomach looks a much better shape than it has in ages, but the spasms, are just never stop. It is as though my insides had been storing up far more than I thought was there, especially when you add in just how little I really eat.

Last night, I actually did wake up due to the pain, so I am reasonably sure that I have found the culprit for my increased tiredness. It’s over two weeks now that I have been feeling over tired, but, it is almost the same length of time since I started to have, increased pain from my guts and started feeling tired. The early stages were probably from the build up that wasn’t shifting, now, it’s because, it is. What I am not sure about is the dose of the Psyllium, do I continue with it just as it is, or do I reduce it? If I reduce, it may just slip back to not moving, if I continue as is, the pain may just continue as well. It’s a difficult one, but I think that I need to continue for another week at least, as I may just be getting used to the dose and it may just all settle down, now that the bulk of the work is actually done. In a way, it is totally my fault. I should have acted quicker last month when I first noticed that the thinner smaller pancakes weren’t working. But I just persisted, as they were the ones that I had made, and they were the ones, I was going to eat. I am so used to my routines and my systems, that the whole idea, that I had got that batch wrong, just wasn’t computing. I just continued in a blind belief that eating them anyway, was fine. I wasn’t going to waste them by throwing them out and I wasn’t going to waste any of my none scheduled time, in making another batch. I already begrudge them the time they take once a month, after all, my body is supposed to work without them.

That is an easy trap to fall into and this isn’t the first time that I have. I have to admit that, that, is a large part of the reason I don’t use my catheters. Somehow, that whole idea that I have to intervene to just to get my body, to do what everyone else’s does without thought, is wrong. I have managed to get my head around so many aspects of my health. I have accepted so much, but to actually physically intervene with my internal workings, feels like one step too far. So if I have to, then it has to simple and fast. Catheters aren’t, they also hold a huge embarrassment factor and a few other issues I’ve written about before. The fact that I have to make pancakes, and I really do now need Adam to help me as well, makes them an intrusion, something that being comfortable with, is really hard. Any idiot can be comfortable just swallowing tablets, me included. But having to go through a once a month ritual of 5 hours work to make those pancakes, to remember to defrost one every day, then to cover it in a fine layer of jam, and make yourself eat it, despite the odd flavour, is wrong. I do it, but it’s wrong and I’m not going to get through a batch quicker, or throw out a batch that’s not right, as I would then have to find another 5 hours to replace them. My body is demanding, so much care these days, just to do the things it once did by itself, and I’m not good about caring for me.

Tablets, inhalers, nebuliser, Pysillum pancakes, wheelchair, mattress elevator, shower seats, pressure mattress and cushions and all the other things I can’t think of at the second, they all push their way into your life. If they are there, like a mattress, no problem, I don’t think about it, I don’t even register its existence. But those I have to think about, that I have to interact with, they wear me down. Not going out, not being able to work, not having the opportunity to live an average life, spending that life in pain and housebound, without a memory and without all the things I once loved, unable to do all the hobbies I once loved, I can live with all of that. That is all easy, I accept it, work with it and make the most of all of it. Just don’t ask me to use a catheter, to find the time to make pancakes or to enjoy using a nebuliser. I don’t want them in my life, I don’t want to have to give time to them. I just want to keep being me, without all the fiddly bits. Without all those annoyances, well I could live forever just as I am, but the more and more things that I have to do, to keep this body going, the less I enjoy things. All I can do is, to hope that no more gadgets are foisted upon me, as I think I might just tell the doctor where to stuff it, regardless of their so-called benefits.


Please read my blog from 2 years ago today – 08/12/2013 – It’s gone again

Half an hour ago I knew what I wanted to write about today, but I was doing something else when the idea appeared and I stupidly didn’t keep a note of it, I just kept working away in the stupid….

Just one more nibble

I decided yesterday to try an experiment, it’s actually something I have been thinking about for a while, but just hadn’t quite had the correct things in the house to try it. At the end of June, I was experimenting with different ways that I could find that were palatable to get my dose of Psyllium into me. With my intestine and bowel nerves more or less useless, the consultant straight away took me off all the meds my Dr had prescribed said Psyllium was the only thing that would work for me. He was right, but he didn’t say just how horrid this stuff is, or how hard it is to disguise it. I found a couple of recipes that worked, but weren’t great and required me to sacrifice one of my meals, just to have the space to eat them. Even the pancakes, which were undoubtedly the best, were incredibly filling and required a lot of other things to disguise the taste, which is somewhat like an odd kind of grass. So what I tried might sound totally back to front, but it really works. I stripped back the pancake mix, removing all the flour and adding two extra eggs, as I had noticed egg covers the taste slightly. Just eggs, milk, Psyllium, a spoonful of honey and yeast. Once risen I was delighted to find that what I had was an incredibly light and frothy mixture, that spooned with ease. Normally it would be heavy, risen, but still heavy and as time ticked on, it set. Not only did it drop off the spoon with ease, it needed little spreading out in the pan as it did most of it itself and cooked with ease.

The batter looks horrid, even in the frying pan at first it looks more like a mollusc than a pancake, especially as the air bubbles bursting making it look like they were breathing. I knew that the yeast would have no effect on the finished article, it’s there just so I can spoon them into the pan, and it’s elastic quality lets you spread them out without too much trouble. What I was left with we an incredibly thin, light cross between a pancake and an omelette. Just two has the total measurement of Psyllium needed and they taste good with just a few drops of lemon or I would guess anything else. I did actually eat half of one with nothing on it. At last I have a way that I can with ease eat this stuff that had been a trial since my doctors told me I had to have it. They are so light that I believe anyone would be able to add them into their day as a snack and not a meal replacement that all my other recipes turned out to be. I don’t know the exact reason, but I can only think that the flour and Psyllium formed some kind of reaction that just made everything heavy. The final test will be answered tomorrow, how do they react to being frozen, exactly where they are right now, solid and awaiting defrosting.

Everything does seem to get harder and harder the more of your body decided to shut down. I know that is just logical, but it is so hard to accept that even the simplest things like taking a couple of tablets can turn into a drawn-out and dramatic event as you once again choke on them. I quite honestly can’t think of a single normal everyday action from going to the loo to getting to sleep that is not somehow affected. I have just sat here for a few minutes thinking and I honestly can’t come up with a single thing in my life that is straight forward any longer, or not a million miles from what I would have considered “normal”. The longer you live like this, of course, it becomes your new normal and you do honestly forget how simple life once was. Looking back I know with total honesty, that if someone had painted out my future to me in detail, I would have asked to have been shot there and then. Yet here I am, living what I would have thought a total nightmare and perfectly contented and happy in this life.

I guess that any of us can look at a list of symptoms that any condition might contain and think that we could live with them. What we don’t see is everything else that comes with those symptoms and the impact on things that we never expected would be changed at all. Somehow without us even knowing at first that it is happening it nibbles its way into our lives. I remember about a year post diagnosis being sent to the hospital as I had mentioned to my GP that the problems I had with my bladder were getting worse. For years, I had accepted that my bladder often took ages to empty, leaked and gave me the little notice that it even had anything in it. I had just accepted it as part of life and got on with it. When I arrived the sister in charged asked me to go behind the screen and sit on the commode which had some system that measured not just quantity but flow and pressure. I was to let my bladder empty by itself, not to apply any muscle pressure, just let it do what it did naturally. She told me it was the worst results she had ever seen, I didn’t dare tell her that it was one of my good days. The result was that I was taught to use catheter three times a day to ensure that my bladder was empty as there were dangers in leaving it the way it was. I religiously did as I was told for the first three or four months. But the impact of doing so was to me a worse issue than not doing so at all.

To me the embarrassment of being in the loo for 10 -20 minutes, as that is how long it took to firstly prepare the catheter, insert, use and clean up afterwards. That was as long as I didn’t have a spasm, especially not one in my bladder, plus finding a way to dispose of the catheters discreetly was too much. It didn’t matter if it was at work, when I was out or even at home if Adam or anyone else was here, I felt embarrassed. Add in the fact that back then the catheters were too big to conceal in my normal handbag and the whole thing just grew in my mind into this monster. I stopped using them. I still don’t use them unless things are really bad, then I do, I am not stupid enough to not do so. For me, the solution was worse than the symptom. Bladder issues, they sound so innocuous, the least important and the one with the least impact of my list of symptoms. Something that anyone can deal with and live with. But think again. Always going out with a bag filled with catheters and all that went with them, carrying spare clothes, underwear and freshening sprays in case a leak went where I couldn’t so easily clean while out, like my wheelchair seat cover. Constantly worrying about smells that weren’t there, accidents in public that you can’t cover up. Having to wear what were then bulky pads just in case, plus carrying spares if needed and then not being able to wear your normal clothing. Bladder issues on the surface seem minor, they’re not. Now start imagining the more major ones, that list of symptoms is no picnic when you look into what it really means to the person living with them.

These days I struggle to get things into me and out of me, that is where being housebound is a plus. At least here in the privacy of my own home if I choke on my own saliva, I’m not completely embarrassed. If my bladder lets me down, well I can fix it, there is no one here to see and no one who is going to make me feel stupid. But that doesn’t make living with them any easier, it’s just there knock-on effects that are now diminished. I might not have imagined any of this could happen to me, or anyone else if I am honest or that I or anyone could still be happy despite it. Trust me, we can.

Please read my blog from 2 years ago – 31/07/2013 – A question or 100’s of them?

I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are…..

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……