The edges of hell

I have so enjoyed the last few days because of the improvement in how I feel. The Gabapentin rise has worked wonders, not pain-free, but it feels so good to not be wanting to swallow booster tablets, within an hour of taking the last one. Don’t worry, I never did, but I was often sorely tempted. I have still taken a few, but when I do, they do their job and I can get on with life. It all seems too good to be true and I haven’t had to wait too long, for something else to step up on the annoyance scale. For years, I have gone through spells of poor continence when it comes to my bladder. A lot of the time, it is just the odd drip, or the odd occasion, being caught slightly short. Yes, there have been times when it has been a total loss of control and a lot of clearing up to do. All forms of MS seem to have an affinity with bladders. For me, it has mainly been problems emptying it, rather than holding on. I even have a good supply of catheters which the hospital decided about 11 years ago I should be using at least 3 times a day. I did for a while, but then I learned that by using my relaxation technique, I could achieve a huge improvement, so unless, I was having huge issues, I could actually manage without them. There is only one thing that you should never do, and that is to strain in the belief that that will force out what remains, it doesn’t. I have had the odd short spell where I have had to resort to their assistance, but I will try anything else first, as trust me, it is just something that intrudes into your life, that medical benefit or not, you want to avoid them.

It has to be about two months ago, that I had my first bout of waking up and on standing, finding that I have no time for dressing gowns or wheelchairs, I’ve had to get to the loo the fastest way possible. It has to be one of the worst instant quandaries there is. You stand up and a drip runs down your leg, if you sit down on the wheelchair, your bladder is going to empty on the spot, but walking is pure danger. Choose!?! So far, I have gone with the taking the danger route, but not without a huge dose of fear. Last week, I found a new issue and this one made me start thinking. I had been to the loo about 15 minutes before and I was getting into my bed. I had just pulled my legs in and I was tucking the duvet under the mattress, to stop them escaping later, as they frequently do. As I twisted, I felt liquid move and it was a millimeter from leaving me for the mattress. It didn’t make sense, but a similar thing happened the next night. Then to my shock, it happened during the day, the first time I was trying to reach something on the floor from my wheelchair, the second, when I twisted to reach something, suddenly I was on the verge of wetting myself. I guessed that they were both due to pressure on my bladder, somehow caused by my movement, rather than an inability to hold onto it. Then last night, I woke up and had to get up, thanks to the pain in my back. As my feet touched the floor it wasn’t just a drip, but total loss of control. The more I thought about it, the more I realised that every bladder failure I have had recently, where usually in line with the pain in my back or stomach. I think that my loss of control has a lot to do with an overloaded bowel, that I can do nothing about. Knowing that, though, isn’t going to stop it from happening.

My bowels are moving, but I have no idea how long it is taking to make its transit. I do know that it was around 10 to 14 days, but I quite honestly haven’t eaten any sweetcorn for months, so I haven’t been able to check. I know from the pressure I can feel, that it is always full, but I have actually had a bowel movement almost every day for the last week. I’m not traditionally constipated at all. The Psyllium is doing its job, and even when I add in a laxative, as I did last week, it did little other than make me go twice in one day, which just meant I didn’t go from the next 4 days and really changed nothing. This one has me stumped at the minute. If I load myself with laxatives, I am only going to cause more pain, the reason my consultant, took me off them all and told me, to never take them again. I just can’t think of any other way to sort this and it feels so wrong to treat one organ ruffly, because, it’s adversely affecting another. Equally, though, I can’t stand incontinence, regardless which form it is. It is one of those things that you just can’t hide, especially, when it is your husband who does the washing. On top of that, there is the problem of clearing up the trail I leave behind me, as I make my dash. I find it almost impossible to clean it up as well as it should be, especially, when you’re forced into doing the work with your feet. If this was a permanent problem, well yes, there are answers to it, but I don’t think it is. I really don’t want a commode, sitting in the bedroom for years totally unused. Nor are pads the full answer either, yes for the drips, but I don’t know any pad that could have collected what I lost last night.

I don’t care what anyone says, there is a huge mental flip that we are expected to take, and for some reason with ease, when, it is another subject people don’t talk about. I have to say, there has been, a huge improvement in the last few years, with the advertising of feminine hygiene products, as they call them, on TV. It has brought a more mainstream feel to things, but that doesn’t stop you from feeling, that you are basically wearing a nappy. To some, it might seem stupid, and I know without a doubt, that Adam will tell me, but I find it personally easier to talk about my death, than I do about a bladder that is failing, regardless of the reason. If, I could get out and about, if, it were just a case of stopping off at the chemist and buying what I needed, then quietly dealing with it myself, it wouldn’t be a tenth of the problem, but as it now stands, I have no choice. I can’t do these things, I am forced to ask Adam, to do the shopping for me, and I find that really painful. It is things like this, that make being housebound difficult. I can deal now without even thinking about all the other issues it throws up, but when it comes to things like this, I find it hard. We all need some things we want to keep private from our partners, not hidden, just discreet and private. For me, this is probably, along with bowel incontinence, which yes, I have had a spell of, that I would like to have at least the choice, of keeping it private. The only alternative that I am aware of, would require me to request a visit from the incontinence nurse, she would them be able to set up a prescription for these items. The downfall there, is, that you have to order them every two months, stop, and you have to go back to the start of the circle. I hope that this will just be another one of those phases. That within a short period of time, things will go back to normal and the problem will be gone.

I’m not stupid, I do know that regardless what anyone does, I will find myself eventually, bedbound and having to wear a nappy. They can call it what they want, that is basically what it will be. Even the alternative of a catheter with a bag isn’t much more comfortable on the brain. It is one of the details of life, that is high on my list, of things that would just make life, unbearable. I suspect it is for most of us. It may be a hell that is a long way from now, but every time I go through a spell of this, or almost anything to do with my bowels or my bladder, I know that what I am feeling, is the edge of it, or if you prefer, a taster of the loss of dignity I face, and that’s something most humans prize greatly.


Please read my blog from 2 years ago today – 19/01/2014 – One simple step

I woke early this morning, at first, I wasn’t sure as I have woken in a gentle slow way and at first, I was totally unaware of any reason for it. I lay there with my eyes shut with the thought of sleep first in my mind, then I liked my upper lip, suddenly…..