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!

4 thoughts on “Some Private Things

  1. Marie Vonow

    An excellent post on a topic which is often hushed up. Thanks for writing this Carolyn. Years ago I spent considerable time trying to get information and support for a woman whose disability had led to continence issues. I made numerous phone calls and was getting nowhere until someone provided me with contact details for an amazing continence nurse. The empathy, support and information she provided made all the difference.

    Liked by 1 person

    Reply
    1. carolyncordon Post author

      Thank you Marie,
      Sometimes you have to bite the bullet, and just do it, when you have something important to share, even it it’s a bit sensitive. In fact especially then, because, as you indicated, finding someone who knows how to help can indeed make all the difference.

      Like

      Reply
  2. Deb tilbrook

    Wow, hi Carolyn..I actually thought what you wrote was beautiful..reading it, I kept saying ” that’s me”. It made me fell loved because some one understands..I don’t reach out to many people, and I don’t contact the Ms society anymore..I also don’t go to group Ms things.i just don’t want to.but honestly, thank you for what you wrote..I’m sorry you also have it , but, I think your amazing for what you wtote.it helped me.thank you.
    ,

    Like

    Reply
    1. carolyncordon Post author

      Hi Deb, I am so glad this piece I wrote ‘spoke’ to you. I feel telling our truth to help other people understand how it can be is important, but reaching out to others to help them to realise they’re not alone, and others have the same issues is even more important. I would love to go out and talk to groups, and organisations, to speak about the brutal honesty of what living with MS can be like, but also about the things that can come when you connect with other people who truly understand, because they are living with the same things …

      Like

      Reply

Please leave a comment ...

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s