I found out yesterday (when looking on a few incontinence support websites) that September is urology awareness month. Now I have to admit I am one of those people who have got a bit of “support this months” fatigue. There doesn’t seem to be a month without some sort of charity awareness being supported. But with this I decided that as it 1. Affects me 2. Isn’t asking for any money or for you to do anything, I have decided to enter into this one. So in the spirit of this I decided that I would again raise the subject of “the unspeakable problem” and try in my own small way to make it slightly less unspeakable!!
I hate my incontinence, I shouldn’t think that there’ll be a person who would say that they enjoy or find incontinence anything except a severe inconvenience but I hate mine. I should think that there will only be negative words used to describe it and how hard it is to cope with, mine is hate, but obviously others may be different!! It’s made my already difficult life a complete nightmare, going out is near impossible because I cannot find any pads that fit my needs at all so am wet so often that I’m having to be changed up to 6 times a day. I have even started to wet the bed again which obviously is just totally mortifying. It’s a nightmare and I have got to the stage where next week when I have my next urology appointment I am going to ask for, no beg for, a catheter. I just cannot cope any more with this, and having tried pads up to extremely large size which not only didn’t work, but also interfered with my already unsteady walking I am struggling to find any pads that hold enough liquid for my extra large bladder!!! But anyway I will update you once I’ve seen the urologist, and throughout any further treatment. I obviously can’t take it as read but please keep those fingers crossed for me.
Our frustrating afternoon however has left us in a complete state of stress. After being positive after seeing the carers support that we might actually be getting some help for mum, yesterday turned that completely on it’s head. Social services have nothing at the moment that they can offer us, they have no respite care for people like me. We can use (and pay for) a “babysitting service” which is not only extremely degrading when you are 38 and whilst I do have brain fog I am neither a child nor am I completely mentally vacant. We cannot afford to pay for this anyway because my parents money (not a great sum anyway) is tied up in long term investments for after they retire to keep them afloat, but my care component pays for my carers and also my housekeeping which I cannot stop paying. They also said that I need to get my incontinence under control because whatever I would be offered, as it is currently they wouldn’t be able to help support (even if I was in my own house full time care, is considered by them to be 4 calls per day). Mum was even told that she shouldn’t bother about leaving me wet and going out and leaving me because if I had that 4 calls a day full time care I would have to stay wet for hours until someone could come and help me. It was at this comment that we realised that we weren’t going to get any help for mum, at least for now. It’s not like my incontinence is easy to leave, rather than being able to stay wet my pads are saturated through, I have usually completely wet both my trousers and knickers too and often the toilet floor too. But as I said, we’re going to have to have another think. Mum needs a break, anyone who is a carer can tell you how mentally and physically tiring it is. We are not quite sure how yet, but we must keep thinking and keep trying to help mum have a break.
I thought in the spirit of urology awareness month and helping people here are a few useful websites for you…..
But I thought I’d finish on a slightly different and more positive note, I finished some knitting I’ve been working on for a while. These were from a “Let’s Knit” kit and as usual went slowly because of my stupid hands, my fatigue and other things but they have been finished. They’ve been given away to my sister’s neighbours small children. What do you think??