Tag Archives: ms symptoms. multiple sclerosis symptoms

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!

Glad to Be Alive

I’ve just been reading a blog post about the death of Gillian Mears. I’ve read some of her writing over the years, since the early novel “The Mint Lawn” to the recent novel “Foal’s Bread”. There are many of her works I am yet to read, and I am saddened to learn there will be no more books coming from her pen/keyboard …

I’m sure I’m not the only person with MS who almost lays claim to another person, simply because we share a disease, and a life interest. But there you have it, both Gillian Mears and I have/have had MS, and we are both writers. Gillian Mears‘ writing has been published with traditional book publishers, mine has been mostly self-published. Gillian died at the age of 51 after many health problems. I am still alive at the age of 53, and living a relatively healthy life, albeit a life slowed a little by having multiple sclerosis.

Is there a point to this blog post? No, not really, except that I thought I should pay tribute to an Australian writer who has done much good work, and earned many accolades, and has now left the world in a bodily sense, but who lives on through her written words, and people’s memories of her. This is how I wish to live on, after I eventually die.

Not that I thing my mortal end is coming soon, I feel I still have many more years left in me. I am able to walk, even run, if I really really have to. I may get a little tired in the evening sometimes after a big, or stressful day, but overall, I’m feeling pretty good. And the fact that I’m not as well known through my writing as Gillian Mears was, is just one of those things.

I never tried as hard as Gillian did, and I’m quite likely nowhere near as good a writer as she was. We all have our own place in life, and I’m more than happy with the place I’m currently in, as a writer/poet with some books published, and doing writing related things that are within my capabilities, and that other people have found inspiring.

I’ve written on children’s reader that still earns me money many years after it was published, and I have three other books self-published that still sell the occasional copy through the Poetic Justice Cafe Gallery in Gawler where I am the Writer-in-Residence, present three times a week. I hold a poetry workshop there on every Sunday in the morning, and have a fine time enthusing others in the idea and reality of being a poet.

Is that enough for one life? I think so, more of the same sounds like a good way to go. Living in a way that suits me and my abilities, and that other people find inspiring? Wonderful!

Action-packed!

I’m currently listening to the fast and furious action of the car racing from Bathurst – it’s not my choice of must see television, but my son had it on and after he left, I haven’t felt the need to turn it off. I don’t really care who wins. Well that’s not true – I hope the winner is driving a Holden, not a Ford. I don’t have much knowledge of cars, but I know I have a soft spot for Holdens, from my childhood memories of our family’s cars, the HR station wagon, the old FB I think it was, and the EH my mum had, and then my older brother took over.

Anyway, car racing isn’t the point of this blog post. The point of this post is that I must become more physically active. It has been shown many times that exercise helps people who have MS, as I have. And my own personal experience backs this up too. When I was first diagnosed with MS early in 2010, my neurologist said to me “Use it or Lose it!”. He suggested I should walk for half an hour three times a week, because the more I did, the more I would be able to do.

I haven’t actually stuck to this wise advice, but the times when I’ve committed to being physically active, are the times when I feel most able to keep on going. So I know that’s what I should do, for my own good. I don’t though, sadly. Every now and then I’ll begin doing Wii Fit exercise several times a week, getting stronger and stronger, and breaking the records, my own and sometimes those of other family members. Then I stop doing the exercise, because I’m too busy, don’t feel like it, can’t be bothered doing it.

I know that’s stupid, and I suspect the next time I decide to get the Wii Fit exercise happening again, I’ll end up disappointing myself again. But you know what? I’m not going to beat myself up about this. Life can be hard enough without having to go through life hating myself for my laziness. I’m going to say “Good on you for having a go”, for all of the times I’ve managed to get a Wii Fit exercise program happening, and “Best of luck!” for all of the times I’ll do it again in the future!

There – having said that, I can let you know I switched on the machine last Thursday and did the weigh in and exercised for 15 minutes. The machine told me I hadn’t been there for 53 days! I can’t hide anything with the machine! The machine also told me what my weight was and indicated I now weighed about 3 kilograms more than I want to weigh.

So starting from last Thursday, I will once again commit to working up to at least 30 minutes of exercise, Wii Fit or other, at least three times a week! The machine and I will both know whether or not I can stick with this program. Right now, I will switch off the computer and switch on Wii Fit machine!

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!

I Blame it on the Cog Fog!

There’s a symptom I get from having MS (multiple sclerosis) that sometimes causes me stress. That symptom is what is often called (by those who have MS) Cog Fog. The technical/medical term for Cog Fog is mild cognitive impairment. I prefer to call it cog fog – it’s easier to spell, where if I want to write the medical term, I usually have to check the spelling yet again.

The reason I’m writing about this, is that I wrote a post for this blog earlier today, a totally relevant post, where I talk about the memoir I’ve written which bears the same name as this blog ‘Mick, Jane and Me – Living Well with MS’. I’m quite pleased with the blog post, I feel I did well with the honest writing of it. The only problem is, I didn’t actually post it to this blog. I posted it to another of my blogs instead.

How silly is that? Actually, it’s not silly, it’s just a frustrating example of what can go wrong, when you have MS. Cog Fog strikes again, and you have to either fix it all up again, or you break down and cry. I don’t like crying, so that’s why I’m writing this post – with a link back to my other blog, where you can read my post all about my Verse Memoir.