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 wasnโ€™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…..

15 thoughts on “The edges of hell

  1. Hi, did you see the program on BBC1 last night about a new treatment for MS? It was really interesting but obviously in the very early stages of being tried out, but it made me think of you ๐Ÿ™‚

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    • Thanks for your thoughts and yes I did see it. Unfortunately, I wouldn’t be suitable as you have to be in the early phases of RRMS, I have PRMS which is a very different animal. I actually did have Chemo, to suppress of my immune system years ago. Every 4 months for 3 years, it worked wonders. My MS was running wild and I wasn’t far from being unable to work. It gave me another 6 years, and my progression rate has been slower ever since, as they hoped. I guess this, is the next generation, I wish them luck with it. It may not help those of us already ill, but it might just help those yet to come. ๐Ÿ™‚

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  2. HI PAMELA.IT’S NEVI AND I’M STILL ALIVE? I’M TRYING TO CATCH UP WITH EVERYONE; BUT I’M STILL VERY ILL.HELL SINCE X-MAS.”NAPPIES” HAVE BEEN PART OF MY LIFE FOR OVER A YEAR NOW. BOTH BLADDER AND RENAL PROBLEMS.AFTER 6 WEEKS OF TUBES PUTTING THINGS IN AND TAKING THEM OUT; I’M HAPPY JUST TO BE SITTING UP AND TYPING(NAPPY IN PLACE). I DON’T KNOW HOW YOU MANAGE TO KEEP UP WITH YOUR BLOG.I CAN’T DO IT. BETWEEN THE TUBES THE, ,PAIN AND PEOPLE WHO MAKE ME FEEL ASHAMED/A BURDEN, BY MY ILLNESS’S,.I JUST DON’T HAVE YOUR STRENGTH.I AM HOWEVER STUBBORN ENOUGH, TO NOT LET THEM TAKE MY DIGNITY. IT’S THE JOB THEY CHOSE, SO DO IT. MY FAMILY ENJOYS MY MONEY, SO THEY CAN DEAL WITH IT OR LEAVE .MOST LEFT.WE ARE HUMAN BEINGS.TREAT US AS SUCH. I MISSED YOU.

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    • I sent you a message the other day as I was wondering where you had gone, good to know your still with us. Blogging has become my life, it is often an effort, but if I didn’t do this, I’d sit around feeling sorry for myself and that doesn’t help anyone.

      Take it easy until you are a little stronger again at least. I’m always around, even if you just want to read and not respond.

      Take care (((Hugs)))

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      • THANK YOU. .TURNS OUT THAT I’M NOT OUT OF THE WOODS YET. YOU GIVE ME THE STRENGTH AND COURAGE TO KEEP FIGHTING. IF YOU CAN DO IT, THEN I HAVE NO EXCUSE, BUT TO KEEP FIGHTING, BECAUSE YOUR STRUGGLES ARE HUGE COMPARED TO MINE.; SO I’M GOING TO STOP WHINING, IT COULD BE WORSE.

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  3. I have incontinence issues as well, more so after my hysterectomy. There are times I get up to use the bathroom and have no bladder control whatsoever, it’s almost like the sensation of when I was pregnant and my water broke. I’m all too familiar with the “trail” on the way to the bathroom as well.

    I’ve tried the incontinence medications with some success. I just don’t like having to take yet another pill. The patches work the same way but my skin is sensitive to the adhesive. I’m told my bladder is prolapsed and surgery may be the only solution. Meanwhile I use pads and occasionally let my ego succumb to the new, more fashionable underwear-like products they have on the market. Though I would be mortified to use those sleeping with a partner. My boyfriend just broke up with me last week so that won’t be an issue for some time, I expect.

    I don’t know how much of this is related to my bladder prolapse and how much is other undiagnosed stuff. As always, it’s a guessing game. I wish you the best.

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    • Sorry to hear you’ve split with your boyfriend, it’s always difficult for the first few days. I have to say, I met Adam on the rebound, so it’s not always a bad thing.

      I know that it’s all down to ego, but none of the products available, even those you can buy are exactly as discreet as they calm, as you say, not something to wear when you’re sharing a bed. If I were you, I’d be biting off the hand of any doctor willing to do the operation. I’m not that lucky, to have that option. I’m not keen on the medications, as I already suffer with fluid retention and I am supposed to take medication for that. It’s another of those never ending circles, life is such fun. I’m still hoping that it will settle down, as it did before.

      Take care and keep your eyes open, you never know who you’ll meet tomorrow ๐Ÿ™‚

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      • I had a prolapsed bladder even before the hysterectomy, and after it’s become even worse. I’ve also developed a rectocele that comes and goes, which makes bowel movements, um, interesting. I may need complete pelvic reconstruction surgery. I had adenomyosis so bad that my uterus had attached itself to all of the organs in my pelvis. It took them 8 hours to remove my uterus and Fallopian tubes (the surgery normally takes an hour) because of all the adhesions. I suspect that without all of the adhesions and my uterus propping things up, they all fell down and every which way.

        They may have to go in again anyhow. No one though to test me for the BRCA gene mutation before surgery even though I have a family history of ovarian and breast cancer (and have a lump in my breast I’m getting biopsied next week). If it comes back positive they’ll be going back in for my ovaries anyhow, so I’ll have them do the pelvic reconstruction then. And I’ll have to decide whether to get a preventative double mastectomy or not as well. Too many choices, too many things to worry about. My ALS testing is also coming up, and I’m more scared about that than anything.

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  4. Pamela i have lost bladder control for many yrs now and have to wear pads 24/7 always. They arent hard to wear at all and have several sizes.I have to wear night time pads all day now and most of the time i dont wet around me.I wear Lady Tena and they r great help aktho if i neglect the loo i would have a big flow inspite of pad.THESE DEFINATELY ARE NOY LIKE NAPPIES AT ALL.CONTACT CHEMIST AND THEY COUKD BE READY FOR ADAM TO COLLECT XX

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    • Thanks for this, when you haven’t been in a chemist or any other shop for 9 years, just looking at a pack online tells you nothing, all I can do is put together my memories, which as I never really looked at them is zero, and what I imagine they must be like. Being housebound is a little like living in a time bubble, especially as I have never been one for magazines or anything of that kind.

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