On Tuesday they came to fit two new hoists; one to get me on the stairlift and one on a gantry to get me above the step into the bathroom. It took seven hours but it was worth it and as I was constipated I needn’t feel guilty about needing to use the toilet several times. It was a relief to know I wasn’t hurting my mother’s back.
We also had a visit from the adult physio therapy team and we’ve all agreed that standing and getting back to walking isn’t feesable. It was nice to have my input valued and not to be patronised as with pediatric physio teams. I also explained my dislike of hydrotherapy because of being patronised and they assured me it wouldn’t be like that so, now they’ve found me an accessible pool near my university in September and for now there is a ‘disabled swimming session’ near me every Friday. I can just swim lengths without specific stretches, under a scheme where I get consessions.
I stood up for myself in regards to more Botox too as the pain afterwards isn’t worth it. It was just lovely to be listened too.
Yesterday I had my catheter changed by a lovely nurse who answered loads of our questions in regards to spasms after having a bowel movement and came up with an action plan. I was prescribed diazepam and took 5ml of morphine to help with anxiety and pain, I’m not used to the out of control feeling so originally I fought it but did relax eventually. We have a system: the nurse holds my stomach back whilst my mother holds my legs and applies heat with a hot water bottle and I can pull it out. I was so proud! I’m having it changed in six weeks to see if it is easier but I’m still waiting for an ultrasound from urology to see if my tube has narrowed.
After that, I went to the salon and pampered myself!
I’m also in the business of practicing putting on makeup but with CP it ain’t easy. Two words: drag queen!