Getting it right for all

As a woman, it should be easy you would think, when it comes to getting used to using incontinence pads, after all, they are exactly like the pads we use when menstruating. For me, there is one huge problem with that, the last time I did that, was 31 years ago. I know that my memory is better when it comes to the past than the present, but even that is pushing it for me. I had a hysterectomy when I was just 24. I know that that is something most women find really hard to handle even when it happens to them later in life, for me, it was one of the best things that ever happened to me. I had my first period when I was just 8 and they had been nothing but a nuisance from that day on. In fact, it was one of the reasons that I loved being pregnant, so when I woke from an anesthetic to be told they had had no other option, I wasn’t sorry to hear it in any way. I felt as though I had been given my life back and that I, at last, had the freedom to live. Finding myself faced once again with no other option than to wear pads, really hit me hard. These last few days, haven’t just been about getting used to the fact that my bladder is now failing me big style, it has been about learning how to wear pads and getting used to not just trusting them, but just the feel of them.

For those of you female readers old enough to remember what sanitary products were like back in the early 1980’s, you will remember that they were nothing like today’s. Back then, if you didn’t use tampons, which frequently leaked, or if you needed the extra protection of a towel, well that’s what they were like, a rolled up piece of kitchen towel , backed with plastic and wrapped in net. Thick, uncomfortable and frequently leaked. Being faced by the modern ultra-thin pads of today, well trust is hard to find. Even finding it in the more familiar looking maxi pads, is tough as you still expect them to leak as they did in the past. My experiment of a couple of days ago when I poured a full mug of water into the night-time pad, helped me a lot, but it didn’t help with the comfort issues. It has taken me a full week to work out just where to position them and how best to make them stay there.

The first time I opened the pack, I did what I thought was the logical thing, to attach the centre of the pad, to the centre of the crotch in my knickers, then pull them up. For people who lead a normal life that might be fine, but I rarely stand and do nothing but sit or lie down. They rucked and twisted, the edges kept unsticking and them sticking to my skin. I just couldn’t get it right. I know that some of you by now are thinking didn’t she read the pack, it’s covered in information. Well, I can’t. My eyesight is atrocious and although Adam bought them for me, I was too embarrassed to ask him to sit there and read all the information on them. I did try to read them myself, but my glasses aren’t strong enough and even using a magnifying glass failed me totally. I headed to the website and was astounded that they told you loads about skin care, types of towels and pants but still not the help I needed. I have at last found a way that is difficult but works. It entails placing them correctly between my legs while standing and hoping it will stay there, while I pull my knickers up, then pressing the adhesive strip to the material. Trust me, it is difficult, but it works. As standing is getting more and more difficult, I quite honestly don’t see how I will manage it in the future. Comfort is important, there is nothing worse than sitting all day with something sticking into you. As bad as the old pads were, you could at least adjust them when needed, you can’t with the modern ones, as they slowly stop sticking and then we’re back to them twisting and rucking. Do I really have to face a lifetime of sitting on my blow up cushion?

It’s one of a million little things that in time will become big things. It appears that as far as pads go, whether I like it or not, I am going to be forced eventually to wear those all in one products. No matter how many different brands I look at, they all scream one thing N-A-P-P-Y! Do we really face a future of being treated and dressed like babies, simply because it’s easier that way? I know it’s such a small thing, and yes, no one sees them, apart from us and eventually our carers, but we’re still adults who want to be treated and dressed as one. Just simply doing something like offering a range of colours rather than nothing but white, would be a start. It’s not that hard to find out the most popular colours of knickers that are sold, then offer their nappies in those colours. I for one without a doubt would feel that bit better about wearing the black version, rather than the white ones, I know it’s just colour, but they just wouldn’t feel like nappies.

When our lives are being stripped away from us in huge ways, if we can at least hold on to our dignity and feeling like adults, rather than as though we are digressing to childhood. It really is those small things that make the difference. I have fought to keep my home as my home, I’ve refused to let it look like a hospital, by taking time and thought and finding products that fit, not stand out, but here I am caught with one I can’t escape. Yes, there are now pants that have an inbuilt pad and are pretty and washable, but they only deal with leakage and are too expensive for most. Once more we are forgotten, we are expected just to accept and put up with it, but I don’t want to and I bet, most of those millions don’t want to either, whether they are male or female. No, I haven’t forgotten about you guys, I know, it’s just as bad for you too.


Please read my blog from 2 years ago today – 04/17/2014 – One last chance

Yesterday afternoon went almost as I expected and I was almost right as to what the role of an MS Support Worker is. They are the halfway house between me, doctors, social work and volunteer agencies, so not qualified as any but with an idea of all, sounds like a lot of jobs these days, a bit of this and a bit of that but none totally. We sat and talked for about half an hour and went over the things that I……

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…..