Carers

The crazy beurocratic paper trail has continued today with two people watching me transfer from my wheelchair to the new shower chair via the new transfer board.

There were four of us in the wet room at one point. One was the lovely OT who I saw before, the other was her straight laced boss. You know when someone obviously has zero compassion or understanding? That's her boss. The whole time my brain was saying 'don't stare... Don't stare' but 🙈 couldn't help it 👀

I said I was nervous about the shower calls starting (I am always open and honest, figuring then people know what's going on with me) so they explained that carers will stay outside of the shower curtain. I said I needed them to wash my hair' well, why can't you wash your hair?! ' boss lady said. So I explained my arms get quickly fatigued from being raised up or moving. I explained that I have tried using a sponge on a stick but it didn't help because I still needed to rub my head with it and that wore my arms out. I explained the heat from even a cool shower makes me feel faint and overheat. She just raised eyebrows. I have been fighting to keep my independence for so long now there is no boss anywhere that is going to be allowed to think I am lazy. I know I look like a person who can't be bothered to walk, and it sounds crazy that I have to lean on the sink to brush my teeth because even that wears me out. I know how it sounds, but why woukd anyone ever have carers in unless they didn't have to?! Personal care from a carer is a really difficult thing to come to terms with and I am still struggling to manage with that, never mind the showers with a boss who obviously doesn't understand ME or fibromyalgia is more than feeling a bit tired today. This will mean a total stranger (the lovely carers I have in the mornings don't work evenings) coming here and seeing me naked in the shower, washing my hair for me, drying it for me, helping me dry and get dressed. It is a lot to get used to. I don't want to be told they are experienced or older, I just want them to get on with it and keep the embarrassment to a minimum. Oh, and stop telling me how young I am. Yes, I know I am young. I know I have a young family and yes, I do want to be able to do things like cooking on lower counters. I asked for those before we moved and was told no. I know you are trying to be nice, I know that, but repeatedly reminding me that I could have a long time ahead like this doesn't help me. I have had enough for today. #chronicpain #chronicfatigue #chronicillness #ME #CFS #hiddendisability #invisibleillness #mentallystrong #howareyou #spoonielife #wheelchairparenting #youresoyoung #whycantyou #illnotlazy #fibrowarrior #fibromyalgia #degenerativediscdisease #IBS #shower #privacy #dignity #independence