Cosmic wrote:Thank you so much for the replies, I really appreciate it.
I've seen an OT, but she wasn't very helpful at all. I practised OT at Brookes myself, and I was told 'well, the reality isn't as they teach you on the course.' I felt so angry and let down! I WANT to be able to get in and out of the bath on my own - why is that such an unreasonable goal?!
I'm waiting to have my sinuses drained as it is a constant cause of infection for me (was meant to be last week, but my surgeon couldn't fit me in) and I can't start the Anti TNF until 2 weeks after that procedure.
I just want a normal life again. The last year has been horrendous.
I feel ashamed to say, but there have been times that I have felt I couldn't go on. It was at that point I made a huge effort to contact social services, and have a care plan put in place. I now have carers who help me take the kids to school, and tidy the house etc. I couldn't cope without them. It's so hard to get the help you need though, when it's hard to do so, and you feel so ill in the first place isn't it?
Hi again
I also have carer support though direct payments and it's the bees knees
I understand about the normal life and when the pain is so awful I think I can't do this any more!
But I'm conscious that it's not just me in this life and I'm just a lady who decides to keep going after a big cry
Re bath
I have tried various gadgets
Bath bubble
Bath knight
But they are only good if you can lift your legs
So try a friend with a bubble pool
Book a session a t the posh hotel in bubble pool
Bath hospital might be a good referral for you
Bath rheumatic diseases hosp
Tmj try getting phorpain gel on prescription
Keep posting
how to be a velvet bulldoser
