Fiona very kindly agreed to be our guest blogger this week. Find out about her experiences accessing the toilet inside her home, at work and when out and about.
We discussed lots of toilet challenges – which we’ll be popping in another blog post around April.
What was your earlier method of using the toilet?
From a very early age my gran and mother was of the “hover” at public loos brigade. I now find myself 33 with MD, a muscle wasting disease, and no longer able to “hover” or stand up from sitting on a toilet.
Which kind of adaptations have worked well for you at home and work?
Everyone is different. But in general I need a loo that rises to either stand me up or line up with a chair.
At home I have a purpose built wet room which includes a Riser (adjustable height)Lima Lift, Clos-o-Mat wash/dry WC. Riser Sink (adjustable height) so I can access sitting or standing dependent on task or energy that day.
I have an open level floor wheel-in shower with Body Dryer and multi positioned grab bars in shower and beside sink and WC.
I also have full length mirrors to suit me sitting or standing. My shower is mounted at a height suitable to operate from my wheelchair or standing.
In my (original) upstairs bathroom (and workplace) I still use a Mount-way riser seat. For me this is great as space in my small bathroom is an issue, I can only access the WC and have different solutions for hand washing as my chair doesn’t fit in the room. The Mount-way is great for me as I can still weight load but for some the angle of tilt is not suitable due to weak legs. The tiles are also a little more dangerous in a bathroom that is used for washing when the floor may become slippery.
It’s worth noting that their can be a problem with my Mount-way riser loo batteries running out. I’ve been left well.. sitting duck on the potty comes to mind when there is simply no “up” left in me.
All of the above along with my riser wheelchair are priceless to me as it gives me total independence and privacy when at home.
What about outside the house – that must be difficult?
Now in an ideal world I would have my home loo set up every time but sadly not.
So for many people like myself have to resort to withholding fluid. This is a gradual thing done over many years that you dont notice it happening. I am at the point when I can’t sit to stand unaided without grab bars, riser toilet/chairs or helpers. So as well as being denied access to the WC, the restriction in toileting, bars me from eating out, cinemas, visiting friends, key social activities everyone else takes for granted.
I can’t eat or drink socially as I cannot independently toilet and it is worth noting that not every disabled person has access to family or paid carers.
How have you adapted to changes in your strength, do you worry about the future?
I have been evolving with my condition for forever. I have always had the eye on what’s next to fix that. Well unfortunately the world wide WC problem has me stumped. There are various gadgets for ladies to pee standing and from chair and all are great inventions. However, sadly I think the only viable step would be catherisiastion as balancing in unsuitable bathrooms is dangerous or even finding enough WCs – and frankly this makes me both sad and angry that yet another function will be taken away from me before it is medically necessary. My bladder is fine I just can’t hold it for up to 8 hrs and eat and drink.
What else would you like readers to take from your experiences?
This is not luxury. We need clean safe loos and lots of them. We have a right to open the door without that intake of breath and worrying about ‘what have we got this time’. We have a right to have enough room for us and up to 2 carers to work. A right not to be fed or changed on the toilet floor. To be able to leave our homes without being catheterised before we are ready. Being catheterised should be my design or for medical reasons and not based on the lack of suitable WCs in the community. Please give us our dignity let us pee in peace.
Fiona, Glasgow, Scotland
[Sub note: Whilst Changing Places offer a large space, adjustable height bench and a hoist, many people are not at ‘hoisting stage’ because they can still weight bear. To hoist requires the ability to carry a sling with you and be with someone trained to take it on and off. Like Fiona says, not everyone has assistants/carers or family who can help them, with them at all times outside the house. When people can still stand (but not get from a sitting to standing position), it is a height adjustable toilet or toilet riser system that is needed, not just hoist facilities.
We feel height adjustable, wash/dry toilets should be standard in all Changing Places toilets.]