When it rains, it pours

Yesterday, the incontinence nurse appeared at my door. I had a memory of her saying she would be back, but I had forgotten totally the date she said she would actually be here. When the doorbell rang, I was totally surprised as I was in the middle of changing my trousers having just spilling egg yoke all over them. I used the last few seconds I had before opening the door to ensure that I didn’t have my top caught up in them, something that happens frequently. Pulling up trousers and so on, isn’t the easiest things to do one handed. If I’m not holding onto something, there is a huge danger of losing my balance when contorting my body to achieve the desired results. She was here to once more scan my stomach to see if my bladder was holding onto fluid, or behaving itself and emptying. She had previously done two test, both through in the morning, this was the first in the afternoon.

I had told her when she was first here, that I found it easier to empty my bladder in the morning, as I had taken my frusemide then. She didn’t seem to get the connection, but when the drug pulls the excess fluid out of my body, I then have a bulk to get rid of. The force of the quantity always seems to make the whole process easier. Later in the day, especially in the evening, I have to spend time relaxing and concentrating on the whole process, but frequently pass nothing more than a series of dribbles. This was exactly what happened when she asked me to go to the loo, and I wasn’t in the slightest bit surprised when she found that I had held onto 198mils. While I was lying there on my bed, covered in gel, I asked her a question, “How long is it safe to go if you can’t empty your bladder?”. She seemed somewhat flustered by the question and said that she had never been asked that before. So I told her about what happened a few nights ago, I quite simply couldn’t empty it and had even been wondering about calling the district nurse for their help, as I had gone from around 4pm right into the night unable to pass anything, other than the odd drip or dribble. I had woken several times during the night as it wasn’t painful, but uncomfortable. It wasn’t until just after 4am that I had success. I was absolutely sure that it had been caused by my guts, as they were full, and they weren’t moving anywhere. She didn’t really answer me at that moment, and I admit that I was somewhat distracted at that point, as she dropped a huge blob of gel onto my just put on clean trousers.

She asked me to go back to the loo and try again, just to see if I could shift anymore, which I did. The result was I brought the stored liquid down to just 95mils. As I was sorting myself out, I asked her again about the length of time it would be safe to keep trying. She asked me to go through to the living room while she cleaned up and put away her scanner and so on, she would join me there and we would have a chat. It was when we were both in the living room, that she said that clearly down to my dexterity and the problems I had inserting them without drawing blood, something that had happened more than once, due to spasms, that self-catheterizing or what they call intermittent catheters just wasn’t suitable for me any longer. She then said that it might be time for me to have either an indwelling catheter or a suprapubic one. I had to admit that I didn’t know what the difference was. Apparently, the indwelling is a permanent catheter inserted just as the intermittent but stayed there held in place by a water-filled balloon, the suprapubic is put into the bladder through a whole in your stomach and just like the indwelling empties into a bag on your leg, or some have a valve that allows you to have say in when it is emptied. She did though what to go back to the hospital and discuss it with her superior and would call me in a few days.

To be honest, I didn’t really take it in until she left. Here was another person wanting to bypass nature’s way and take over with plastic. I could within months find myself with both my bowels and my bladder emptying into bags. I also did the exact wrong thing, I read up about it online, where of course I found all the bad things about having them, the possible infections, bladder stones, and so on, and how they have to be cared for. I also came across the horrific entry that said the suprapubic could be inserted under a local anaesthetic, which sounds horrific to me. On the good side, I wouldn’t have to wear all these terrible uncomfortable pads, as the issue of wetting myself will have been taken care of. Mind you, would having a tube coming out of me, be any more comfortable?

I do know the dangers of my bowel not emptying, especially as the last thing I need is any infection as they are bound to throw me into a flare, but all of this feels as though it is running away with me. I can’t remember when, but I know that I have written it more than once, if you invite the medical profession into your life, without a doubt, they will find something wrong with you that you didn’t expect. I invited her in when I started wetting the bed as I wanted to get the free pads through the NHS, now suddenly, I’m facing possible permanent catheterisation. A result that never entered my head when I asked my doctor to help, as I was wetting the bed.


Please read my blog from 2 years ago today – 04/07/2014 – 1 hour is changing my life

Sometimes it takes something going wrong, for you to realise that it has always been wrong, yesterday was a perfect example of that. The day started well, my new system to give me more time to myself and also to allow me to still be active online while Teressa and John were here, it worked perfectly. I did push it in how fast I was doing everything and that believe me is…..

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…..

Life’s itches

I am sitting here struggling, not with pain or spasms, but with what feels like my entire body, I have that horrid ill feeling again, this time I know what it is. In the last few weeks I have been having odd days here and there where I just can’t actually finish what I have made to eat, all the meals I have aren’t what most would call big, but all to often I am finding that the porridge I make can’t be finished and has to be thrown away, exactly the point I am at right now. For years I have been going through spells of this, just not able to finish my food, not because I feel over full, but simply because I feel that if I ate one more mouthful I would throw up. For the last few years, I have had exactly the same breakfast and exactly the same quantity, I can be sure of that as I measure out the oats in the same ramekin every morning. I didn’t choose the quantity because it was the amount I wanted to eat, it actually came down to the amount that I could cook in the microwave in one of our bowls without it bubbling up and out of the bowl, but it does mean I can be sure about what I have prepared. I have been having the same issue with my other big meal of the day but I have the answer there, it is always a cold meal so I can eat it as slowly as I like, unlike the porridge as there is nothing more disgusting than cold porridge. None of that helps me at this very minute when even though it has to be more than fifteen minutes since my last mouthful and I still feel sick. I personally have linked my inactive bowel to the problem for many years, but the doctors seem to brush that aside and insist they are two separate things. Although I don’t seem to have lost any weight, mind you I haven’t stood on the scales for a couple of months, but I don’t feel I have lost anything, I am eating far too little and I know it, but what can I do when I can’t eat anymore and what I do eat, just doesn’t leave me?

My body does seem to be falling into quite a bad state at the minute, between the above, the constant spasms in my rib cage and my bladder just not wanting to empty when I want it too, I am right now struggling to see what of my internal functions are actually working correctly. Usually when my bladder plays up, I just self-catheter for a couple of days, it might be that that just allows it to rest and return to normality, or that I am just getting myself through a bad phase, but to date, it has worked. Despite being told that I should be using a catheter all the time, I stopped that just a few months after being taught how to use one, as it is yet again one of those medical theories that isn’t practical. Right now the issue is that my bladder seems to be locking so tightly that I can’t actually get the catheter in, all I can do is wait until I feel like it is about explode and then head for the loo, at that point it always releases, probably because it can’t do anything else. There is also one other thing that works and that is to make it function by taking diuretics, my bladder than fills quickly and empties cleanly, but that doesn’t help me at night. Last night I tried but couldn’t empty my bladder before going to bed, I could do nothing else but go to bed with a prayer that I might make it to the morning, I didn’t. I woke at 2 am, desperate and having to move as fast as I could, not easy when your body is half asleep and wanting just to return there. Disturbed sleep isn’t good for the pain levels or spasms, I don’t know why but the less I sleep the greater they are, it is also a fact for me at least that if I am woken for any reason what so ever, I never go back into a deep sleep, proved again as I was up at just after 4am and again woke at 7am, before the alarm at 7:30. Clearly taking a diuretic anywhere near bedtime, isn’t a good idea, but I am thinking of taking it around 4pm, that way hopefully I might manage to remove the bulk of the daytime build-up and will get a clear nights sleep tonight.

When you are first diagnosed with something like PRMS, there seem to be people all over the place who teach you how to deal with the issues you have at that point. For example, I just had to mention once that I was having problems with my bladder and I was a week later in hospital being tested and the week after that I was admitted for a full week to learn how to use the catheters. They didn’t seem at that point as though there was anything that they wouldn’t do to help, I have to admit that at the time I thought it was because they knew they had botched things up for the previous 20 years and they were feeling guilty, now I doubt that, but I see a need for the same concentrated approach as the stages advance. I know that my choosing not to keep going to see my Neurologist may be partly to blame, but I honestly think that I should be able to get the same level of care through my GP. I have been over and over with him the issues that I am having with my bowels, yet here I am still blundering around in the dark and not getting any closer to resolving or even under control. I think there could be a real positive for people like me with memory issues, to spend a couple of days in a hospital setting every four or five years. I hate staying in hospital as much as the next person, but caught for 48 hours with people to talk to about what is really happening and with them able to observe just how you are really coping, could see a huge improvement in many people’s health. I know the NHS is struggling with their budgets and such a plan will probably never happen, I am just throwing the idea out there, as I honestly believe that I would be able to over that period of time, to really pass on and show them the truth of the issues I have, not just my sketchy half-remembered garble that comes out when I speak to my doctor at his convenience, not mine.

I just checked the ‘things’, well the place where the ‘things’ were at least. It has now been a week since it closed up and the last of the pus left, but I am very aware of the fact that the skin on the left side of my mouth just doesn’t feel right. The worst thing on earth to gauge anything size has to be the human tongue, somehow it enlarges the tiniest speck into a mountain, so the fact that the area still feels nothing like it was before, well I was taking it with a pinch of salt. Any piece of skin that has been stretched hugely for around 10 weeks, is going to take time to return to normal, that I think is quite simply a fact, so the feeling that it is sort of baggy and not anything like the other side of my mouth isn’t really worrying me. What made me look is the feeling that there are new lumpy area’s, I was worried they just might be lumps getting ready to burst. Luckily there is no sign of that, it does still look different from the other side and I think the lumps are more wrinkles of skin caught between the tightening sections, but it is clearly not as taunt or sharp as the shaping on the other side. There is even some more than obvious new folds in the skin at the side where it used to be a clean line connecting the top of my mouth to the lower section. Now there are three ridges rounded and soft folds on the right side compared to just the one fine and sharp ridge on the left. Other than that, by just looking at it, there is little sign to me that there is anything there at all, possibly a couple of slightly raised area, but nothing that would make me bother anyone with, but I have agreed to go next week to the dental hospital and I will. The only odd thing I am constantly aware of is the sensation that the frontest skin ridge is permanently itchy, I would just love a bag of crisps right now so I could munch and crunch them on that side of my mouth, scratching and scraping at it in the process, no matter what else is wrong with me, there is still one thing that I would put at the top of my list of annoying things in life, that itch that you just can’t scratch.


Please read my blog from 2 years ago today – 27/10/12 – Questions

It is all too easy these days to get the impression that everyone in this country and maybe in the entire western world has gone mad. I know values change and so does technology and expectations, but when I heard lately that one of the items now in the list of essential items, used to determine if you lived in…..