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Posts tagged ‘Accessible Loo’

Drinking whilst Disabled – Part 2

The medical information bit

As disabled people we often have a more intimate interest in our bladder than most. At the most extreme end catheters of various sorts are involved.

I have one close friend who has a supra-pubic catheter so we often talk about the problems she has. Supra-pubic catheters are only usually used for people with severe spinal damage or who have had multiple problems using urethral catheter, i.e. one’s that go in through the urethra. 

The articles written by The Times columnist Melanie Reid – who is now tetraplegic following a riding accident describe only too graphically the very small gap between a healthy bladder and severe and life-threatening sepsis. 

When I first realised I needed to limit my trips out to places where I could plot a route between loos, I determined this would not restrict me. I remembered about a card I could carry. I also knew that I could take medication.

The card is called I just can’t wait and is available from the BBF

The medication I take is Oxybutynin which is used to treat people with irritable bladder syndrome and other related conditions. 

Oxybutynin can be taken in tablet form or as a patch. Please be aware there are alternative options and that Oxybutynin does not suit everyone. I’m fortunate, it works perfectly for me in that my bladder control has greatly improved. I no longer have to desperately rush to the loo more often than is convenient. 

This is specially relevant for me in the mornings. I often wake up with severe numbness in both my feet and at least one of my hands and some times both. It can take up to half an hour for my body to decide to start working properly. Prior to medication I would usually end lurching sideways and hitting myself on some furniture or at worst, completely fall over. 

For those who want a non-interventionist approach – there is the option of badder re-training. A leaflet from Kings College Hospital, London gives lots of good information. 

Some women find Kegel exercises help and wikihow has a great set of instructions.

There are also Kegel exercises for men which are sometimes advised after prostate surgery. This is the link to a useful US leaflet. 

Bladder problems are not inevitable whether you are disabled or just getting older. There is plenty of help. Some medical professionals will try everything not to prescribe you medication. But you have a right to access the treatment you want. If you are refused treatment, seek further advice from another doctor or specialist nurse.

 

 

 

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Everyday Life, Medical

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Drinking whilst Disabled – Part 1

The unspoken issue

Next time you are out and see a group of disabled people having a meal – sneak a look and see what percentage of them are having something to drink. My guess is that it will be less than 10%. I don’t mean alcohol either, but tea, cofee or juice.

Why? The lack of fully accessible disabled loos.

Recently I attended a conference of political activists. At lunchtime there were three break-out groups, one for BEME, one for LGBT and a third for disabled people. The first two were held on the upstairs balcony of the main hall – which had no lift access. Thus stopping anyone who was disabled and wanted to attend either or both of those groups.

Having got lunch, those of us in the disability caucus started our discussion about how we could be more involved in our movement. It was a good and lively interaction with plenty of feedback for the Chair of the morning session and the conference organisers.

The conversation widened into the difficulties people had attending local meetings. As I looked around the group I realised, that except for one person, none of us were drinking anything with our food. That person has a hidden disability which requires her to drink regular small amounts of fluid. She is also reasonably mobile and doesn’t always need to use an adapted loo

For many of us, especially those with conditions that affect our spine, we have a constant worry about continence. Yes, I know there are now all those picturesque adverts for Tena Lady or similar products. But, for me at least, they remind me of those ghastly sanitary towels I had to wear at school. I found STs really uncomfortable and was very self-conscious wearing then, especially as they often made my skin very sore. I did try some of the various ‘discrete’ pads, when I first had some bladder problems, but felt they weren’t the answer for me.

But there is another aspect to this, almost every disabled person I know agrees there are never enough accessible loos. Even some of the ones that are marked as wheelchair accessible clearly aren’t – or you have to be a contortionist to be able to lock the door. I discovered one like that at a hospital I visited, which specialised in treating spinal patients!

As I’ve been writing this blog I’ve just seen a Facebook post from a friend who has encountered an “accessible” loo with a door that will only close if she leans her whole weight against it. Not easy and certainly painful if you use crutches and have severe joint pain, as she does.

In my experience the worst buildings for having “accessible” loos that aren’t, are hotels and pubs. But in both those locations the issue is often not just getting a wheelchair into the loo but navigating the various doors to actually get to the loo.

On several occasions I have decided to leave my wheelchair outside the door and stagger into the loo. Only to be greated on my way out with “If you can walk why do you use a wheelchair?” As you can appreciate, I often find it hard to give a polite reply. The best response to this question came from a friend “If you’ve got brain why don’t you use it?”

So I knew full well why I and my fellow activists were all staying ‘dry’ for the day. Many had long journeys to get to London and you certainly can’t guarantee that you will find a useable loo on either a coach or a train. 

This was highlighted by a Paralympic athlete who spoke of her humiliation after being unable to access a suitable loo on her train journey. You can read the article here.

Yes, we know we should drink more fluids – though I consider the two litres a day advice to be a definite myth. If faced with the option of restricting what you drink or not being able to get to the loo in time – which would you choose?

The second part of this post will give information about the options some disabled people chose to help them deal with bladder problems.

 

 

 

 

 

 

 

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Everyday Life, Medical

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