Tag Archives: incontinence

Some Private Things

When you have Multiple Sclerosis (MS), you are likely to have tingly and or numb hands, feet or other places. You may have ‘food drop’, or fall over far more other than other people without MS do. Or you might have muscle weakness, and drop things a lot, or even be unable to walk. You have have problems with your eyesight, showing at its worst as blindness. These are all troubling symptoms and if you have them I am sorry for you, it sure isn’t a good thing. I’ve had or still have some of these things.

But all of these things will bring you sympathy from most people except horrid people who don’t care about anyone else. I hope I don’t have such people here, reading my blog posts. Anyway, back to the theme for this blog post … The things listed may well bring sympathetic responses, and that is a good thing. But the trouble with MS is that there are other symptoms too, that certainly won’t bring such sympathetic responses from the average person, not unless they are particularly understanding people or have experience with the some symptom. They may instead bring disgust.

And if you haven’t guessed it yet, that particular symptom is ‘continence issues’. Really though, continence isn’t a problem, it’s actually INcontinence that is the problem. Continence is: ‘the ability to control movements of the bowels and bladder.’ So yay to everyone with that ability, no problem there. The actual problems come with Incontinence, when that wonderful control to corral those movements to do their thing if and when you want them to get a move on, is absent.

When those naughty contents just up and move away from the bladder and or bowels, and head on out of the body when and if they darn well want to, that’s incontinence. So yay to you, if you have that incontinence thing happening, you have my utmost sympathy, even in your most unlovely of moments. I am on your side, I know how it feels. 

Bladder and bowels are great when they work properly, processing the heck out of food and drinks, taking out the good stuff for your body to do all of the good things it does, to keep you going. And then after, hanging onto the waste for removal at the proper time, and in the proper place, Yay body, thanks, great work. But sometimes, oh sometimes, the call of your bladder and or bowels may not be heard by your brain, and things may get a move on with no control at all, that waste just decides to rampage outa there and whoosh, off it heads, and the waste goes where waste is certainly not supposed to go!

If you’ve been there, you know what? I’m there with you, and I know how it feels. Dignity is the thing us disabled people want to hold onto, and respect too. But it’s hard to hold onto your dignity, and to get respect, when you’ve just pooped and/or pissed your pants. But you know what else? If it’s happened to you, and you’re still there, going out, risking further ‘incidents’, good on you, you have the dignity of a person who will take a chance, and do something, instead of hide away, coward-like. And you have my respect, because I know how hard it is to get clean and tidy after such an event. The world is not set up to help you with that one, unless you make the first moves to get things happening in that regard. 

Continence aids, pads, pants, catheters, are available, if you know what you need, and where to get them. I know the MS Society in South Australia and the NT have a special nurse who is there to help people with their problems with incontinence. The nurse is called a continence nurse rather than an incontinence nurse, I suppose because her tole is to help clients to be continent rather that INcontinent. It makes sense, looking at it like that. And in Australia, there are various government things, to assist with the costs.

Anyway, to finish things off, and lighten the mood a little, I am a poet, as well as a blogger and writer, so here is a little poem of mine I wrote a while back. I hope you like it! And if you are in a group that would love to have me come and talk to people about this kind of thing, contact me, I’d love to be there with you. Just tell me where the toilets are when I arrive!

On ‘Going’ …

You’d better go, before you go,

‘Cos if you don’t, well you know

You might be left with penny unspent

& it’s too late, if you already went!

After Recent Neuro Visit

Today I had my annual visit to my neurologist, and I have to report I am more or less happy with the result of it. I had my muscular abilities tested (arms and legs) my eyes too. He always does these tests.

I measured up well enough that he certainly seemed perfectly satisfied with how I’m going, as I am too, for the most part. But visits to this specialist tend to leave me slightly dissatisfied, in minor ways. I feel it’s because I feel like I’m wasting his time, perhaps, and my own time too.

What do I expect from my MS specialist? I’m not sure. I do know that he is good at his job, and knows his stuff. I am on the best medication for my Multiple Sclerosis (MS), and that is because that is what he offered to me, once it came out in Australia. Gilenya has been great for me.

My blood test results are good, and I feel pretty good too. I certainly have some problems, health-wise, but only minor ones, compared to what many are faced with, who also have MS. I do feel that particularly in regards to my mobility, I’m going well. There is certainly no need for a wheelchair for me, no need at all.

grayscale photo of wheelchair

Photo by Patrick De Boeck on Pexels.com

I don’t do marathons, that’s true, and doubt I could manage one, but doing marathons has never ever been on my list of things to do. If I wanted to do one, I feel that, with a good physio advising me, I could do one, (after lots of training!). It isn’t something that interests me at all though.

I’m more a brain type, not a brawn type. I only want to be physical enough to be able to walk around, drive my car, and get lids of jars if my husband isn’t around assist! If I were to lose my ability to get around, that would be a huge impact on my life, for sure. But at this stage of my life, it isn’t looking like that will happen, not for a long time yet, anyway.

The issues I have with MS that are troublesome tend to be related to incontinence, and that isn’t something that’s terrible pleasant to talk about, but we did discuss it briefly, and he reminded me it’s something we spoke of at my previous appointment. I indicated the issue has worsened a little, but when he suggested a couple of things, I let him know I was happy enough I had the problem under control, really.

When he mentioned Botox as a possible treatment, I let him know I was definitely not interested in that. I feel my problem is more a muscle related one, and doesn’t need Botox, if anything, it may benefit from training in pelvic floor muscle exercises. Apart from that, as I told my neuro, I have funding from the NDIS to assist with pads to assist with continence.

So basically, I actually have things under control, and am not interested in the things suggested. Is that why I feel that tiny bit of dissatisfaction? These visits to see my specialist are not free, and I didn’t have private health insurance, they may be less than easy to pay for. So do I feel I’m wasting my time and my money going to see him?

Well sort of, to some extent, but not really. I think it’s good that there is feedback between my GP and my specialist. My GP does the getting my blood tests organised, and has the results sent to my neuro. My bloods are good, going by my most recent tests, no negative affects on my liver, etc. All good.

So really, going to see my neuro annually is fine. If and when I have any more pressing issues, I know he’s there to investigate things that are beyond my GP. Do I need any more than that? No, not at the moment. Maybe my whinging is because most of my health issues are simply because I am getting older, and I don’t like that fact?

Yeah, that’s probably that, as well as my neurologists less than soothing ‘bed-side manner’. He is blunt, not rude, or anything, just straight forward and honest. Ah well, such is life, I’ll suck it up and be grateful for my good fortune, and stop being such a sook!



The Strange Things I Know About

Call Me the Poo and Pee expert!

I had a session today, with one of the people at the MS Society, in their new venue. Because I’d never been there before, I left in plenty of time, and found the place easily, so was early. My phone ‘told me where to go’, politely of course!

Because I was there early, I was able to have a cup of coffee and an apple. They were both free, which is always nice, when you’re living on the Disability Support Pension! The apple was there in a delicious looking fruit bowl, to help to promote Bowel Cancer Awareness Month, and because I was at the MS Society to discuss continence issues, it was completely pertinent.

Continence, or more correctly perhaps, incontinence, can apply to both the bladder and the bowel, and it means when, what I’m going to call pee and poo, arrive too fast, when we don’t want it to, then the resulting unpleasantness can occur.

And of course, we all know just how unpleasant poo and pee can be, when you’re not actually sitting on the toilet seat, (or squatting outside in the bush). And unfortunately, it seems to be true that people with MS are more likely that other people to suffer from these embarrassing issues.

Getting help

The reason I was at the MS Society, was to look into the best options available to assist with dealing with any potential messy problem. Incontinence isn’t a really big issue for me, but it is a sometimes problem, for sure. If I can get a pad/liner to help me, I want to get the one that suits me the best.

I have been approved for financial assistance from the NDIS, and I am glad that I am able to be reimbursed for my money spent to keep things nice! The MS Society worker is looking into method of payment for continence support items for me, and will get back regarding it.

And I wanted to discuss the whole incontinence thing. From how the discussion went, I’m doing the right things, to assist my own body with these things. I drink plenty of water, and have a good amount of  fibre in my diet. The correct amount of water is 30ml for every kg of body weight.

How Much Water is the Right Amount?

So my weight is around 56 kg, so I should have around one and a half glasses (250ml) of water. This amount of fluid can include two cups of coffee in a day, but after that, the caffeine causes excessive urination. So it looks like my current amount of water/fluid taken every day is about right.

I usually have 2 or 3 cups of coffee every day, with about 4 or 5 glasses of water. Another way to check on whether intake of water is sufficient, is too check the colour of your urine. It shouldn’t be the colour of cider, or apple juice it should be a lighter and clearer straw colour. So, if you want to check your situation, just take look, before you flush!

Drinking enough water can assist with preventing Urinary Tract Infections too, and that is not a pleasant thing to suffer from at all. Since I began drinking more water over the past couple of years, I haven’t suffered with one of those nasty infections, and I am very glad of that.

In summer, especially if you spend time out in the heat, your sweat will take away some of your water intake, so you must remember to drink more water. Also if you are working out, running, or being active working in the garden, the yard, and so on, then you must keep up your water intake.

There are many kinds of drinks for sale to ‘keep you hydrated’, but simple tap water is the cheapest method, so really, you don’t need any fancy drinks, just water. If you want water with a bit of kick, try a squeeze or squirt of lime of lemon juice, delicious!

Remembering How Things Have Been

I was looking at another of my blogs this morning, and found a blog post that is very much suited to this blog. I sometimes accidentally post the incorrect thing to a blog, as in this case. This error may be caused by having too many blogs, not paying enough attention to what I’m doing, my MCI (Mild Cognitive something that starts with an I – Impairment, I think).

What ever the reason (and it could just be age …), this is where you will find the blog post I’m talking about. In the post I talk about Mick the Stick, the mobility device I have that assists me when needed to get about. As the time of writing the post in August 2013, I was three years into my new life with Multiple Sclerosis, and getting more used to walking with a walking stick.

On the day in question, I was obviously feeling stronger, but still a little uncertain about my footing, so took Mick the Stick with me on a walk I wouldn’t even think about using him now. When I re-read the post, prior to decided to put up the link to it on this post, I wondered, but then remembered how frail I had felt at times with my MS. Frailty isn’t with me these days, except perhaps at night after a big day of being out and about.

I am so glad my medication and whatever it is, is working well for me, and I can almost forget I have a chronic illness. Except of course when I forget a word I know that I know, which is frustrating, but it also reminds me not to get too cocky about how ‘well’ I’m doing with things.

And then of course there are the rushed trips to the toilet which remind me even more strongly of some of my less lovely MS symptoms. Any kind of incontinence is a very nasty thing to have to deal with, and I am grateful to the government for the financial assistance to buy the items needed to deal with the issue.

Does anyone else have thoughts about the progression of a chronic illness they’re living with? Please feel free to leave a message in the comments section …



How Disabled is Disabled?

When I first was diagnosed with Multiple Sclerosis, I couldn’t properly use my cutlery, and my strength, particularly on my right side, was about as weak as a little kitten. I was constantly tripping, and sometimes falling, and I wasn’t really able to safely drive my (manual) car.

I applied for and was given the Disability Support Payment (DSP), and certainly felt it was deserved. Then after a year or so on a treatment that was working, I could drive my manual car is a safer way and got some of my strength back, particularly on my left side. I was still noticeably weak on my right side though, and still felt quite disabled.

Time goes on, and my body kept on healing, hand in hand with my medications. I was able to give up one medication (the one to help with muscle spasms). I kept on with my MS medication, and was glad to be getting better and better. I was more able, and was happy to be getting back into my life, attending writing workshops, helping more at home with various things, and so on.

Now, five years later, I’ve changed medications and am enjoying taking a tablet every morning instead of having to inject myself in the leg once a week. With medication, a positive attitude to life, and with a healthy diet, and some physical activity, I am enjoying my life with MS. Am I cured? Do I still deserve the DSP?

It’s a question I ask myself sometimes, when I see other people living with disabilities, who seem to be far worse off than I am. I wonder, do I still deserve this payment? Don’t others deserve it more than me? I don’t know the details exactly of these other people, nor of other ‘normal’ looking people around the place. How many people are there out there wondering if they are disabled enough for the DSP?

But then I think of the bad things I’m dealing with too, and I remember the things my carer/husband does for me, so I am able to do the things that help to keep my attitude positive and happy. If I had to do all of my housework I would be unable to do much else. Certainly getting out and about in summer time wouldn’t be possible, I would be totally disabled by fatigue.

My cognitive impairments are increasing, with many more memory failures, and tripping over nothing at all is still something I have to take care about, otherwise I’ll hit the floor again, a painful reminder of my disability. I am able to keep on doing things, because I work hard at remembering the good things in my life, when incontinence issues almost make me want to crawl into a hole and hide.

When I remember these things, this is when I realise that yes, I do deserve this payment, my husband certainly deserves his Carers Payment, and yes, I am indeed disabled …

How Up Close & Personal Should I Go?

Don’t get excited readers, this blog is not about to get smutty. That would embarrass me and my family unnecessarily, and I’m not going there. It’s not that kind of close and personal I’m going to write about here! In fact the subject I want to write about here is as far from sexy as you can get.

The personal stuff is about my bowel and bladder. Go on, log out if you think you’re going to get grossed out. But if you too have up close and personal issues ,from your insides misbehaving, you may find some things you can relate to. I’m not saying I can solve your problems, but as you will see, I’ve had to learn some things about these issues …

I have MS (multiple sclerosis). I have a variety of things that don’t work as well as they used to because of having MS. For instance, all of my fingers and toes tingle, all of the time. I have a level of muscle weakness on my right side. I have some cognition ‘issues’ ie, if you rely on me to remember something, it may or may not happen. Hot weather or stress make my symptoms worse.

These issues aren’t good, but I’m dealing with them OK. I’m on a medication that is easy to take – Gilenya which is a small capsule taken in the morning, every morning. This medication seems to be working very well for me. It doesn’t work well for everyone, and I feel sorry for them, and hope for the best for them in their search for their best medication. There are more and more medications making their way to the Australian system …

I was previously on a different medication. This one was Avonex, which was an injectible – into muscle, once a week. This meant I had to inject stuff into my thigh muscle, either left or right thigh. I was going OK with that, doing it for two years, but the immense feelings of relief I felt when I was going through the wash out period before beginning my snazzy tablets told me the true story. I’d been managing, but not as well as I’d thought …

Anyway, I’m going well, able to walk a reasonable way, and able to keep on doing stuff through the afternoon and into nighttime. That’s great – my non MS stuff takes me out at night sometimes, and I’m glad I can do it all now. But … Isn’t there always a ‘but’ in stories like this? The ‘but’ is that my body hasn’t taken complete control over two parts of my body, the two parts that are most likely to cause me intense embarrassment. Can you guess what those two parts may be yet? Yes, that’s right, my bladder and my bowel.

‘Accidents happen’, is an old saying, and sadly, for me the saying isn’t so old. Accidents happen for me, not every day, but often enough to be a bother sometimes. And some of these accidents can be embarrassing in the extreme. Fortunately for me, I’ve been able to keep the ‘Oh dear’ level relatively low, but I don’t know for how long. My worst ‘Oh dear’ happened on the way to an MS event one evening. I ended up having to investigate the back streets on my way, and was very grateful for poor night lighting in that particular back street. It was a wee accident, not a poo accident, and I managed to get away with no-one else noticing, thanks to my recovery actions …

I know I should always ‘go’ before I go but sometimes I forget, and sometimes the travel just takes too long. Other accidents so far have only happened at home, and I’ve been able to do the clean ups myself. It’s not a thing to be proud of, really, or is it? I’ve managed to clean myself up, without having anyone else put out by having to look after me. So maybe it is something I can be proud of …

Wees and poos happen, as a natural part of life. I’m just going to go on trying to keep them at a relatively clean and tidy part of life. Most of the time when these accidents happen, it’s because I’ve ignored the messages my body has been sending me. So this is my message to anyone reading this blog post – your body knows a lot about you, and when you pay attention to what your body is trying to tell you, things will go along better.

Having said all of that, I have to confess that I have no real excuses to have too many actual accidents – I receive a payment from the government to assist with various pads etc. Sometimes I’m too vain to use them, and yes, that’s when I sometimes pay the price of clean ups …

So, listen to your body, and don’t be too proud to use help when you have it. Incontinence can be a game changer if you don’t take care!