In my intro to my new feature “Life On Four Wheels” in my previous post, you might remember me saying that I tend to shy away from talking about life with my disability for fear of people thinking I was “oversharing” as aspects of it are pretty personal and intimate. I don’t want to scare people off, instead give them an insight into said disability, so I want to give you a fair warning now: if you’re at all embarrassed thinking about how I manage the bathroom situation, this isn’t the post for you. And it does feature the occasional swear word, so heads up on that score as well..

We all need to go to the toilet, and I’m pretty dang sure most able bodied people take for granted the ease with which they’re able to do so. When you have a disability though, this is just one of the things that is made harder: I can’t sort out my own trousers, or wipe my own bum, but even before we get to actually doing the deed there’s the matter of how you get onto said toilet in the first place.

When I was young, this wasn’t an issue – I was lifted on and off by my parents and other relatives. As I got older and now in adulthood though, hoists came into play, and now I can’t use a bathroom without one, as my PAs can’t lift me. So, toilets that are deemed “accessible” (I actually loathe that phrase so much) aren’t actually useable in my case, and I have lost count of the times I’ve wanted to say this to well meaning but undereducated staff in a multitude of public places but bite my tongue as its not their fault their access is in fact pretty shit, but instead the people who design these buildings/transport etcetera and think a toilet being slightly bigger will work for everyone with a disability.

Therefore, not going to lie to you: not being able to go to the toilet really fucking sucks. Spontaniety goes out the window, as does one’s intention to keep hydrated, because there most likely won’t be a toilet I can use around. I got way too used to holding it in which is really really bad for your kidneys, and makes you feel like you’re being stabbed in the lower back repeatedly, and often felt ill as a result of this, and forever dehydrated. You’re then left with the dilemma of never being a fulfilled, social, happy human being because you never want to be far from the hoist in your bathroom, or you go out and suffer through the pain. It’s not just physical pain, either, I found it mentally draining too, having to try and stay relaxed around friends when I’m bursting…

Draining, and also embarrassing at times. Holding it in often makes it worse, and sometimes, however hard I try it doesn’t work. There are people who I know and love spending time with who I fear won’t want do so again after I admit this, but here it is, in the spirit of me being open and honest: I can & have wet myself in the past. I wear dark trousers more often just in case it shows through, or don’t take my bag off. It smells and I’m so embarrassed if it happens that I will make an excuse to leave early in case people find out, or don’t go out at all if I’m invited.

That’s no way to live though, and in recent years, this situation has got a little easier to manage: I discovered these special absorbant pants that I often wear when out and about, but even they aren’t full proof if I have a day where I’ve needed to pee lots. I hate wearing them as they make me feel like I’m wearing a nappy, and it’s not as if I need to wear it because I can’t control my bladder. I have to wear them society thinks “accessible” fits everyone. I even need to wear them at night as I only have provision for my care in the daytime, so often lay awake waiting to feel dry again if I need to use them, and thus am prone to soreness & irritation which drives me crazy!

I’ve been on some of my jaunts to London unable to use the toilet on the train, which often meant these pants would have already been used at least once if not twice by the time I get to Paddington, which really sets the tone for how I’d feel the rest of the day, despite seeing my friends & all the amazing shows I do. I had a particularly bad time of it when I was with my friend back in April, so much so I had started to think of not going anymore because the pain in my kidneys and the embarrassment if I’d wet myself was getting to be a real struggle to cope with. I even toyed with looking into getting a catheter, so as to have a bit more peace of mind but even then I would need help emptying that and having an operation feels a tad extreme.

It was pretty recently I discovered “Changing Places” toilets – these are designed to be bigger and easier to move a wheelchair around in, as standard accessible toilets aren’t built to accommodate more than one person, and also have a hoist in (generally ceiling track, but manual hoists are also used, and have a changing bench to use if needed!

I can say with total sincerity that these have changed my life, but we noticed something that would make them even better. On my most recent outing to London for a two show day, myself and my evening/weekend PA Shelley who knows how much the embarrassment and general toilet situation gets me down decided enough was enough and searched for the nearest one to where I’d be spending my matinee, and ended up in the Changing Places toilet in Embankment Gardens. We shut the door and just spent a few minutes cheering – this was going to make such a difference to me physically and mentally when I am in town – no more burning kidneys & self inflicted dehydration.

Only to find that this hoist wasn’t charged – Shelley and I had to laugh to keep ourselves from cursing, and I resigned myself to another uncomfortable day. Shelley was having none of that though, and she’s my absolute hero!  Through a combination of her sheer strength and me (having already been put in my sling before this point) hanging on to her and the toilet rail while she sorted my trousers and wiped, we managed it. I sort of wished we’d filmed it the struggle was so ridiculous! I didn’t want Shelley to risk herself physically, it’s so unfair on our PA’s, parents and so on, and she’s still recovering from a knee injury – but am so thankful she was willing to. Mortifyingly, we also had to enlist the help of a stranger to help Shelley lift me back into my seat properly, and I’d be lying if I said that didn’t make us uncomfortable – for his sake and my own! We also discovered that the other Changing Places toilet in the block is out of action (cobwebs all over the door handle so god knows how long it’d been like that! Which begs the question:  one assumes the local council is responsible for the upkeep, so what’s the point of having them if they aren’t kept charged for people like me who need to use them?

Happily, our 2nd outing after my matinee was much easier – we headed to Great Ormond Street Hospital and I’m so grateful to the gentleman on reception who I know went and checked the hoist was in working order – Shelley told me she went and asked if we would be able to use it and told him of our misadventure earlier in the day- he was so kind and sympathetic.

The feeling of release from worrying about if I could go to the toilet was immense. I can and should be able to go like everyone else – to my mind it shouldn’t even be an if. Sadly though, there aren’t enough of these Changing Places toilets around – there are only 1, 132 available in the country! Thus, for those of us 1/4 million who need them – navigating daily life and toileting can still be a struggle, as it’s one more barrier to being society being inclusive, but it’s a battle many charities and other organisations are fighting to change: change I wholeheartedly welcome, applaud and that’s well overdue.

The Changing Places Consortium launched their campaign in 2006, you can find out more at:

http://www.changing-places.org/

Phew. Well, that’s the “embarrassing, oversharing” type blog out of the way! Stay tuned for more of my musings and as always – please do tweet me @wheeliestagey or find me on Facebook at https://www.facebook.com/WheelieStageyBlog/

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