Farewell privacy

“How are your bowels doing?” A personal and slightly bizarre question, right? Well… not in my world; I’m asked that almost every day. The doctor, nurse, carers and even my husband, ALL want to know how it’s all going in that department. There hasn’t been this level of interest in bowel movements since my Pride and Joy arrived into this world, over eight years ago!

The day my independence sailed off into the sunset it wasn’t alone; privacy and autonomy were part of the flotilla too. I can do nothing without help, nothing. I can’t get up, go to the toilet, get dressed, eat, walk or even talk without physical or technological assistance.

Privacy is a cherished right so many people take for granted. I was 39 when I lost mine because of MND/ALS. I remember so clearly the day it all changed: It was a sunny Autumn morning as I shuffled nervously to the front door. I had been assigned a carer to help me get ready as I had been struggling for nearly two hours to do it by myself. It was exhausting. It’s incredibly difficult to admit you need help, for me I knew it was the beginning of the end. The scales of power had tipped and MND was getting the better of me.

The lack of privacy surrounding my bowels is just the tip of the iceberg. My daily shower is a group affair. Imagine getting stripped and scrubbed and then dressed by two carers every day. Not something you’d find on the average person’s Bucket List. Fortunately I have wonderful carers who make me feel comfortable sitting in the nip while still being able to have a laugh. They have made the abnormal feel normal for me. I have to admit my relationship with my ‘A-Team’ of carers is pretty uninhibited, after three years together, inhabiting each other’s personal space, there’s not too much we don’t know about each other ; )  My husband used to feel sorry for me needing carers, that was until he heard the roars of laughter coming from the bathroom –  then his sympathy quickly evaporated!

One of the things I miss the most is curling up and having a good cry alone, in private. MND exaggerates my emotions so when I cry it’s a full-on snots and tears incident, impossible to hide as they both drip down my face; not a pretty sight. I can’t hide my sadness even when I need to most.

All joking aside, I suspect some of you may be thinking – “Oh God, I’d sooner die”.  But when you’re thrown into a situation beyond your control that you know you’ll never win, sometimes you just have to let go and see where it takes you. It’s all about compromise folks; my new best-frenemy! I’ve become a master of compromise, not by choice, I might add. I never wanted carers but now I’m fully dependent on them. They provide me with independence so I don’t have to burden my husband with my daily personal care – that’s priceless.

Life doesn’t always work out how you expect but sometimes you just have to find the strength to muddle through and focus on what’s important to you. It’s not easy…

Sharon x

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