Well maybe not lightening speed in reality but in my head they are!
Due to the frustrating lack of feeling in my lower body, I can no longer have a relaxing soak in the bath or stand for hours in a steamy hot shower.I now have to use the facilities that have been provided for my youngest son Lewis.
We were all so excited when Lewis’ wet room was completed. We finally had all that we needed to give him a shower in comfort and be able to move him from room to room in a safe & controlled manner.
Never did we imagine that 6 months later one of us would be reliant on equipment/facilities that had been installed.
Now tucked in the corner of his wet room in an adult shower chair for me to use and a small basket full of my bits that I need to have a shower. Also in the basket are spare pads and wipes as I now have to use the toilet in the wet room as well.
90% of the time the wet room is used for washing syringes, storing nappies/wipes/healthcare bits that Lewis needs. It has his specialist shower stretcher attached to the wall and his ceiling mounted hoist that enables his carers to hoist him on to the shower stretcher with much less hassle than dad lifting him on.
When I need to use the wet room, whether it be for the toilet or for the shower, I stop the care team from being able to access the sink for washing up the syringes, their access through to the kitchen where some of his meds are stored in the fridge, access to his nappies and other personal healthcare items. This isn’t too bad but the worst thing is from my point of view.
The wet room is situated at the end of Lewis’ bedroom and next to the end of the kitchen. I have to lock both doors, the one from Lewis’ room – oh and make sure the blind is down and the door from the kitchen.
Due to my lack of feeling and sensation I have no idea if I need to open my bowels so it can take a long time of me sitting on the toilet hoping that something will happen. I sit there trying to put something noisy on my phone – music/videos/tv programmes – you name it, in order to provide some sort of noise barrier from those in either of the adjoining rooms. I will myself to hurry up, willing my body to comply with my pleads of making something move as quickly as possible. It makes me so anxious and self conscious that people can hear what I am doing and there have been days where my anxieties take over and I dont manage to go and end up having an accident later on in the day.
The same thing happens when I have a shower. I become so aware that I am preventing people from using the wet room for Lewis needs. I do my best to have a quick shower, which isn’t always easy when you can’t reach your feet and have forgotten to put your foot sponge on a stick within reach. I have such fast showers that I am sure I’ve not washed my conditioner out and not scrubbed my back properly!! I find myself feeling vulnerable and at the mercy of those in the house. Should one of them need something for Lewis there is only a coin in the lock in the way of them coming into the wet room and seeing me in all my glory.
It doesn’t help that I am so self conscious and I end up only showering when Lewis is at school and its just Paul or my mum around to help me should I need it.
I feel like my condition has held me to ransom and I hate it.
#transversemyelitissucks #showeringisanightmare
Transverse Myelitis & Me, With A New Addition! 