suffer with heavy urge incontinence and bowel problems since I was a child I have cut down on my caffeine I’m on medication and under the hospital I wear Nappies 24/7 as i can’t make to the toilet, my next stage Is properly have a botox injection to relax the bladder my fear is if its too relaxed I might it have to use a catheter for bit if the botox don’t work then I might have to use a catheter for a long term . I have autism living independently but I have support and I have a carer see me and takes me out when I not up to driving I suffer a great deal of anxiety and get anxious, headaches a asistigmasism a lot so wear glasses permanently and I get very overwhelmed and emotional when me and my carer are in busy places he makes sure that I need the bathroom disabled toilet as I sometimes need help or reminding of my personal hygiene like not washing problem especially if I had accident in my nappy on my bad day as I have them a lot. On the whole I try keep busy I do drive but I have to plan my journeys especially if I plan a long journey as I get very anxious my bladder will implode its goes on my car seat I don’t want it ,as im scared people will think different reason I wear Nappies, Is to avoid embrassment like if staying night at friend or family or a hotel adlest I feel secure and safe without being questioned, i know its sounds bulky making me feel I’m lazy i do my absolute best to get to the toilet when I can and when im out in a town public toilets are shut I have to ask a pub or cafe to use disabled toilet for that reason, i have im too scared ask and with the bladder or bowel urge warning I got then its too late when I out with my carer in his car he puts a cover on front seat for me when he takes me out. I try ad’and do things for myself but it can be a struggle I don’t give up, So my question is this is it silly for me to wear Nappies? as it might have to permanent.
Living with incontinence is one thing, having autism on top of that makes the anxiety and stress a thousand times worse. I have autistic friends so have some idea of how overloaded and stressed you become. You are very brave and all the very best to you.
I have have had bladder problems for years. At the moment I have to wear nappies all the time. I go from being incontinent to complete retention. So wear nappies and often have to self catheterise too. Getting a nappy off in a public place when your bladder wants to explode and getting a catheter in can be challenging. I use the Speedicath flex from coloplast, a godsend, all in a self contained discrete pouch.
Going out is always stressfull. Generally, I carry a tablet bag, big enough to have my tablet and a nappy change and catheters. If I am going to be out for long I wear plastic pants in case of a leak.
In my car I keep a rucksack with a change of clothes, nappies, catheters, barrier cream…and top up my man bag from there.
The radar key is great when it works, I have found sometimes it does not.
It can be be very stressfull when you know you need to change and can’t find a toilet and then a clean one.
One consoling thought is that generally, people are not very observant and whilst you are so self conscious of your emergency, 99% of people around you don’t notice a thing.
I am now used to planning ahead. It is always easier going somewhere familiar where you know where the clean, safe places are to change. It is much harder in new places.
Sometimes when I am panicking I console myself with the thought of wondering how the people around me would cope with the life journey I have been on, with all the surgery, catheters, nappies, pain and loss of dignity and still keep going. This thought makes me realise I am a tough old boot and it gives me the boost I need to get to that toilet. Good luck. J
