I know it doesn’t sound like a big deal, and I never thought that it really was until I found myself here. I have been living in this strange world of not just having to wear knickers, like anyone else does, but another layer of an absorbent pad, now for over three months. Bladder incontinence, it doesn’t sound like much. What can be so tough about wearing a nappy to protect yourself from embarrassment, and your clothes, and home free of pee? Well, once you get past the balancing act required every time you go to the loo, or get dressed, not much, right? Wrong. Like everything else that our health throws at us, there is a lot of adapting to be done. You wouldn’t believe just how hard it is, to accept, no not the fact that your bladder has failed, but the fact that it doesn’t really matter. I still find myself flying to the loo, just to arrive once the whole show is over. Trust me, there is nothing odder than feeling warm liquid collecting between your legs and for it to be perfectly normal, and apparently not an issue.
That’s the first thing that you learn about these incontinence pads, they don’t absorb instantly. The way that they work is to form a sort of trough, where the urine sits until it’s absorbed. The first time I discovered that it was actually quite distressing. I was sure that the whole thing was a complete disaster and at any second, it was going to run everywhere. It didn’t, but just that feeling that it was going to, nearly turned it into one. In some ways, that is why I am writing this because I am sure, the first time it happens to anyone, they must think the exact same thing. Why they don’t explain something that simple to you, I don’t know, but they don’t. They hand you this huge pack and I do mean huge, each is about 18 inches by 10 by 8, and they give you three packs at a time, storage is your first problem. Learning how to put them on the second, and that reservoir of liquid is the third. Unless you wait until it clears, you will be in a mess, so don’t panic, just wait until it clears before trying anything.
It doesn’t matter how many times you feel it, or whether you are alone or in company, the desire to move as fast as you can to the loo, doesn’t seem to get any less. Being in company, just adds more questions into the mix. Is it safer to stay where you are, let it soak in and then go, or take the chance and head out of the room? Both rely totally on one thing, your confidence in how well you’ve positioned that pad. Did you remember to pull those flaps out at the back? Are those elastic strips tight into the fold of skin where your leg joins your body? Are your knickers holding it firmly in place? Which worries you more, pee on your white settee, or it running down your leg and all over your wheelchair? I have to say right here, so far, touch wood, they have never failed me, but that doesn’t stop the fear because the whole thing is totally alien.
We are only a few months old when our parents sit us on a potty and start hammering it into our heads, that we don’t want to have a wet nappy. I still don’t want to have a wet nappy, but unlike every parent I have ever known, when that nappy is wet, it gets replaced with a clean one, I can’t change mine. Those huge packs that they give you, only contain one for every 12 hour period. We are expected to wear the same one, wet or dry for that enter time. I have been lucky, very lucky to have friendly district nurses, they snuck me in another pack, so I don’t have to go through such a thing. I have to admit, that I did try it, not when the pad was soaking, but way beyond a dribble, just to see if I could get past the phycological barriers. I only wore it for an hour and to my surprise, it really wasn’t as bad as I expected. They do pull the liquid away and I didn’t feel wet, just moistened, as though I had some sort of cream that hadn’t been absorbed. I know that the day will come when I won’t be able to keep changing myself as I would today. I will have to wait for someone else to be here, to help me, someone who isn’t Adam. No, I don’t want him changing me, any more than I want him showering me, so the point will come, when I will have to choose which one, would upset me the most. It’s a hard choice.Then there is a question that has circled around in my mind many times, how can it be safe to wear a wet nappy for so long? The most obvious is the question of nappy rash. If it happens to babies, it must happen to adults as well. I know that our skin isn’t as delicate, but our urine is more powerful. Then there is the question of infection. Surely, all those bacteria circling around the entrance to your bladder has to raise the chances of bladder infections? What better environment can there be for those nasty little bugs to grow and to do their worst, yet that’s where we are told they should stay. How can that be right?
Becoming incontinent isn’t just about the day you first wet yourself, or even when you see the continence nurse, it starts there. Your right there at the start of something that is going to test you daily for the rest of your life. The only sure way of ending that is to have a catheter fitted, and that is just the start of a whole other set of problems. I can’t get past the fact that no matter how well they design and make incontinence pads, they are just as likely to fail as any baby nappy is, and they fail all the time. Add in our disgust of the whole subject and hatred of admitting we can’t control it, and no matter how much we want to pretend it isn’t happening, we are caught in something huge. I’m good at adapting, I’ve done a huge amount of it over the years, but I have a feeling that there is part of me, that will never adapt to it because it’s not the same as anything else. I guess it’s that hammered in training, as we are being dragged right back to the beginning of our lives and going through that childhood failing, all over again.
Please read my blog from 2 years ago today – 12/09/2014 – Danger, danger
Two Rooms Plus Utilities 
Well done for talking about this. It does get talked about on a few programmes on Radio4 here in UK but not enough. The practical advice you give is echoed by good incontinence nurses who I know demonstrated by pouring a jug of water onto a pad for a friend of mine.
I think the choice of who to help you with showering is such a personal one. As a massage practitioner, some female friends only come to me as a male because they know me, others wouldn’t go to a male at all and some would only go to a male they didn’t know personally. I would guess that help with changing and showering elicits even stronger emotional reactions.
Dave
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Oh they do. I already have a female carer who showers me, but changing a pad, isn’t something that you can say when it will be needed. Carers arrive at set times in the day, so it creates a very different problem, one that at this second, I don’t have, but the future looms large.
I too poured water into a pad, more as an experiment to see how much it would hold. It doesn’t matter what you see, how it feels when it happens is very different. It takes a lot of trust to feel secure when they are on and getting wet, not to mention the off putting way that it feels. It’s a trust I still don’t have, as I know baby nappies fail, and adult ones aren’t that different. Maybe in time that trust will come, but after three months, I’m still not there. 😦
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What an excellent commentary on a situation not experienced by all! However, for those of us who live with this reality, it is a definite concern. This topic is on the top of my “doctor discussions” for my next appointment in a few weeks. Usually I can manage during the day (although I set an alarm on my cell phone to remind me every two hours to head to the bathroom); nights are a completely different matter! My nightly routine includes my bathroom visit, then I sleep – but as soon as I wake, I need to get back to the toilet (and many times do not make it in time). Once the flow begins, there is not way to stop it. This can also occur if I wait too long during the day (especially if I have been “out and about”). I wear an absorbent undergarment developed specifically for this purpose (“Depends”) whenever I can reasonable anticipate an issue. BUT you can image this event can occur especially when I haven’t anticipating it. Hence the reason for the alarm on my phone, during the day while at work, to battle unplanned issues. Thanks again for sharing your personal experience – please know you are not alone in this issue!
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I strongly suggest that you acquire the correct pads. You can’t buy them in the shops, in the UK, we’re luck enough to get them free from the NHS, outside the UK, I guess you can buy them online. These are the ones that I have been given http://goo.gl/mBFhJD , but it depends on what the incontinence team recommend for you and your needs.
I still make myself go to the loo. I still want desperately to not wet myself, but as I said, I think that’s something trained into us. The difference now is I do know, I’m not going to have so much of a mess to clear up and as I said, they haven’t let me down yet. I hope it goes well with your doctor as it really is something you don’t have to live with in silence. (((Hugs)))
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I’ve “graduated” to the adult diaper now. An incontinence pad used to do the trick, but not any longer. And in my case it’s just ‘old age’ instead of anything traumatic. But it’s still annoying. And yes, that feeling of pee in the diaper is disconcerting, thanks for the tip on being patient and letting it absorb in..I thought I was going to be walking around with a wet bottom! And so far (knock wood) there’ve been no fails and no wet drawers to contend with! This does need to be discussed more as many of us are reaching an age where it’s an issue..and this isn’t only women. My husband really needed the male version in the last couple of years of his life, but he felt embarrassed and so I spent a lot of time wiping urine off the floor (the carpet was a write off). 😦
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I don’t think our age matters at all, it needs to be spoken about as the more it is, the more those taboos that held your husband back, will be broken down. Recently in the UK. they have started advertising incontinence products for both men and women on TV. I was delighted to see it, as for the first time, it was beginning to be brought into the mainstream of life, where it belongs. Now, it’s just time before people get it through their brains, that these things happen. x
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I completely agree! In US, television advertising has been in place for quite sometime. However, there are so many misconceptions about incontinence – I have often thought “if you only knew” when the jokes about adult diapers begin. I haven’t told anyone so I don’t think anyone knows. And those who think it’s so damn funny won’t be laughing when it happens to them…
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Hi,Pam,How brave of you to speak the unspeakable,rock on.I couldnt apply a cream cos I can’t reach but there are some out there that can keep your skin from the nappy rash.I think it’s called Drapolene, nurse should know.There also used to be a liner to stop the pee passing back through and keeping yr skin dry!!Keep fighting the good fight.
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The pads these days include the stay dry lining, but so do babies nappies and they still get nappy rash. For now, it isn’t something I need to worry about but in the future, when I can’t change a pad, I will need to look into it. 🙂
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Well written again, glad you’ve exposed its not a cough with a few drops, as many imagine I expect?
X thankyou
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Pretend you’re an astronaut. 🙂
http://www.techinsider.io/how-astronauts-pee-poop-in-space-2016-7
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I wish I could float 😩
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Pretend you’re a feather. 🙂
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I CALL MYSELF A WRITER. I CALL MYSELF YOUR FRIEND. NOW, I SIT HERE, IN TEARS AND DISAPPOINTMENT IN MYSELF. YOU WERE MY STRENGTH, BUT I FAILED YOU, WHEN I KEPT MY INCONTINENCE TO MYSELF. I SHOULD HAVE WARNED YOU; BECAUSE I KNOW, EVERYTHING. FIRST, ASK ADAM (if you can afford it), TO PICK UP SOME EXTRA STORE BOUGHT NAPPIES.12 HOURS IS TOO LONG. YOUR SKIN WILL SUFFER, PAINFULLY. I DON’T KNOW IF YOU REMEMBER, BUT I TOLD YOU THERE IS AN AMUSING SIDE EFFECT. ((WOMEN SPEND A FORTUNE, SHAVING, WAXING, AND WORSE TO REMOVE BIKINI HAIR)).NAPPIES SUFFOCATE THE HAIR FOLLICLES(,PERMANENT PUBIC HAIR REMOVAL). FOR YOU AND I ,IT MAKES NO DIFFERENCE BECAUSE OUR BIKINI DAYS ARE OVER. THE TIGHTER THE NAPPY, THE MORE CHANCE OF SKIN RASHES. THERE IS A CREAM; BUT I DON;T KNOW THE NAME IN YOUR COUNTRY.YOU WILL GET YEAST AND BLADDER INFECTIONS.CLEANING AND CHANGING THE NAPPY MORE OFTEN IS IMPORTANT. DON’T WEAR IT TO TIGHT. YOU NEED SOME AIR.I WEAR MINE LOOSE. ONE DAY I HAD TO GO OUT AND THOUGHT I STEPPED ON SOMETHING. I HAD RENAL FAILURE FOR 2 WEEKS. THE NAPPY HELD IT ALL IN UNTIL I COULD SHOWER MYSELF. I KNOW THAT THESES THINGS ARE HARD TO DEAL WITH,BUT YOU WILL LEARN. I HAD NO CHOICE. DO NOT WORRY, FOR IT MAKES IT WORSE. IT IS THE NATURAL PROGRESSION OF AGING. FOR US IT IS MORE DIFFICULT, BECAUSE OF ILLNESS. MY SISTER-IN LAW IS WELL AND WORKS, BUT HAS INCONTINENCE PROBLEMS.THE KEY IS TO ACCEPT;; WHICH IS WHAT YOU PAMELA SUTHERLAND TAUGHT ME ALMOST 3 YEARS AGO. I STILL THINK OF YOU EVERYDAY, ALTHOUGH I CAN;T TYPE. I AM WITH YOU IN SPIRIT AND IN BATTLE AGAINST THE INVISIBLE MONSTER THAT IS ILLNESS. LOVE YOU ALWAYS………..NEVI
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The district nurses had sneaked me extra nappies, so that I don’t have to go the 12 hours. They too thought that it was madness, not just because of the physical problems, but psychologically, it would be too difficult to bear. On the days that they don’t shower me, I already have adult wet wipes for my entire body, so that one is fixed, and we’ve had bottom wipes now for general use, for years. A French idea I believe, but we both like them. As yet, I haven’t felt the need for cream, but if needed I will use it straight away.
I haven’t noticed the hair loss, but if it goes, it goes, that won’t bother me either way. As for acceptance, again, as you know, I will get there, it’s the having to have someone else change them for me, I can’t quite get my head around. So far, so good, it hasn’t been required.
It’s good to see you back, I hope your a bit stronger than of late and that your daughter is doing well too. Don’t be a stranger, just a line every now and then to say your still with us, would be nice. Take care and stay strong (((Hugs)))
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YOUR WRITING AND THOUGHT PROCESS IS PERFECT. IF I DIDN’T KNOW YOU, I WOULD THINK THAT YOU ARE A HEALTHY/WEALTHY, WRITER OF LITERATURE.
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I HOPE TO BE ABLE TO KEEP IN TOUCH WEEKLY. I SO MISS OUR LONG-DISTANCE TALKS. THEY MAKE ME HAPPY.
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