If I had the opportunity to change one thing about my life that is affected by my disability, it would most certainly be the ability to use the toilet independently. Due to my difficulty in standing and walking, I have always had to have help to get onto and off the toilet. When I was younger and still at school, I always had someone around to help me – my parents, family or support teachers. It probably wasn’t nice for them, having to constantly take time out of their days to help me with something that any other child my age could do by themselves, but at least I could manage to deal with natural bodily functions when the urge arose, safe in the knowledge that someone would be able to assist me whenever I needed it, as long as the nearest facilities were accessible of course!
However, ever since I have decided to go it alone and live independently with the support of carers, this situation is remarkably more different.
I consider myself to be a pretty independent person who would much rather try and do things for myself if I am able to, rather than constantly having someone at my beck and call to do it for me. With the right adaptations in place I can cook for myself, go out and socialise, work and do plenty of things I like to do without having somebody stood at my side 24/7. If I can physically do it, without it taking too much effort and energy, I will try. (My parents might not agree that I adhere to this 100%, but you get the gist of what I am trying to say 😉 ) Therefore when it came to assessing my care needs with my social worker, it was agreed that I would require a few calls a day, including 15 minute pop-in calls to assist me with getting to the toilet. My care needs aren’t high enough to qualify paying for a 24 hour live in carer, nor would I want one, as long hours being with someone you might not be best friends with and not much opportunity to be on my own would be a nightmare for me!
The main conundrum that comes with having allotted personal care time slots each day, particularly when using an agency like I do, is that every small part of your day, including when you go to the loo, has to be put in some form of schedule with little room for flexibility or spontaneity. For the vast majority of people when you get the urge to go, you rush to the nearest place available and go! For myself and many others with physical disabilities, this is not an option. In my case I usually have 5 calls from carers a day, most under 45 minutes. 5 opportunities to use the toilet. If I can’t use the toilet within those 15 minutes I usually take to try and go, then i’m screwed. Stuck in my wheelchair for the next however many hours until the carer is due back again for my next call. To be fair to the care agency I currently use, they do try their hardest to be flexible and move or add any extra toilet calls if I require them, but with dwindling staff numbers within the care industry and an increase in the amount of people requiring support, it isn’t always a possibility.
I do have my parents, family and friends who try and help out if my need for support is vital, but I don’t want to have to rely on others’ generosity for things that are a natural part of my every day life, and I shouldn’t have to either! It also has (and will) severely affected my relationships with those closest to me. No matter how much people try to deny it, having to rely on other people for the simplest of tasks that others easily take for granted really does make me feel like a burden sometimes.
Not being able to get to the toilet when the urge calls for it affects my life in other ways too. I’ve always struggled with my fluid intake and definitely don’t drink half as much as I should be doing, whether its water (which I should be drinking!), tea, juice or coffee. I get scared of drinking too much in case it sets me off needing the toilet when I’m unable to go, and because I’m so used to not drinking, actively picking up a bottle and drinking takes a lot more time and effort for me to do – I feel my body tense up if I drink sometimes. The problem with not drinking enough, however, is that it ultimately leads to infections – one of the symptoms of which is an increased urge to go to the loo – so it’s pretty much a double edged sword.
I have tried to work out when and how much I need to drink, so that by the time the carer arrives I should get the urge to go. However, this doesn’t always go to plan as the stress of carers arriving earlier than expected, or the anxiety of realising I have only 10 minutes in which I can go and the pressure of some carers reminding you how long they have to help you (hearing them pacing around waiting outside your bathroom can be a trigger of time pressure too) – this can all put a stop to any urge you had in seconds!
I’ve explained before the even greater stresses that befall me if I’m unable to use the toilet before bed, so added up, all this little stresses can take up a huge chunk of my day and impact my life in ways it can be difficult to imagine. I hate the fact that such a tiny part of life ends up ruling my thoughts and actions throughout most of my days. If I was able to use the toilet every time I needed to, like everyone else, my life would be so much calmer and I’d feel more independent and free.
Unfortunately, as far as I can see, there is no easy solution to this problem. The only options I have been given by social care and health services are to ask for help from family and friends when carers aren’t available (which puts a strain on my relationship with them if I have to ask for help often) or to wear large pads provided by the continence team in the NHS (which, despite their size and absorbency claims, do not manage to hold a huge amount, especially when you’ve been holding on for hours trying not to have an ‘accident’ and wet yourself). Both of these options, but particularly the pads, feel really uncomfortable and undignified.
The ultimate option, which a few people (both abled & disabled) have suggested to me, is to get a catheter. Personally I don’t feel able to go down that route right now. It feels such an invasive procedure for such a small issue that I could possibly get round with more support. There are risks as well of more UTIs, and the thought of the pain and discomfort of it all scares me.
I wish there was a much easier solution out there, like possibly an emergency call out service for care needs, giving carers blue flashing lights – showing just how vital and important their services are to people. But I know, especially in current times, this will probably never happen.