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Needing Personal Care is Ruining My Life, you too?
I've been wondering whether to post or whether it's too negative but I figure if nobody actually talks about it then there could be loads of people in the same boat as me but not speaking out. Looking at it more positively maybe this community could help me see my need for personal care in a positive way or give me ways to cope.
As the title says, needing personal care is ruining my life! From the age of approximately 11 when I asked to use the loo in school and I would get this, sort of annoyed but it's my job so come on lets get it over with look. I'm now 34, people's grudging help has left me not able to use the toilet when I think people are waiting for me. I'm awaiting a diagnosis for PTSD which was originally thought to be shy bladder. I'm fighting Social Services for a 24hr care package which I don't want but have no choice as I need assistance with everything. I want to live by myself and be able to do everything for myself but Social Services and some OT's make out I'm just being lazy. I'm not and OT's and physios are now backing me up, 5 years later. I'm frustrated and damaged. I don't want people in my home but to live in my home I need them. Hourly calls don't work as that just increases the, 'I have to do xyz in an allotted time frame', thought process. I honestly don't know how to live. I have two new PA's due to start, lost my last one, who was with me for two years, due to her own health problems so have been back with my parent's since then and all through lockdown. I dread training new people, I can't relax and shake, get constipated because I can't relax, you get the picture, maybe I'm being too honest! Each person I have ever had, feels like that guest who you've had a nice evening with but now you want them to leave so you can use the bathroom, put comfy PJ's on and go to bed. I was born with Cerebral Palsy so I've never had this freedom but I want it and can't understand why some professionals think it's only laziness stopping me.
I'm sick to death of my need for care ruling and ruining my life. Is it or has it been the same for anyone else?
I've just finished Alex Brooker, My Disability and Me. He visited a Scope helpline centre and I couldn't believe that Social Care was so far down the list. I know many people are lucky and don't need personal care but plenty do. Am I alone in thinking like I do? I've been asking for help with my mental health for the past 10 years with most saying my situation is too complex for them to treat, doesn't do wonders for my self esteem either! I've been on the waiting list at my local mental health hospital for over a year but the waiting time has just increased to at least another year due to COVID-19. I also don't have much hope that they can help me anyway at this point, having being knocked back so much. I'd feel better if it was a disabled psychologisist in front of me, maybe that makes me a hippocrite?
Please get in touch if you feel you have anything to say, especially if you can relate to what I'm saying. I wouldn't wish this on anyone but it would be nice to feel less alone.
I really don't expect anyone to have the answers but feel I have to ask, how do I live my life and not just exist???