What does it feel like to live on your own with MS and essentially be your own carer?
Luckily, we now have a vast array of information for carers of people with MS. There are carers groups, helplines, benefits.
Thank goodness things have improved immeasurably since my dad had MS back in the 1970’s.
But living on your own with MS is a whole different ball-game – you are the patient and the carer. Sure, we might see our neurologist and MS nurse once a year – the support they give is invaluable.
Yet look beyond those two appointments, and you discover a whole raft of worry, anxiety and fear. It’s almost like arguing with yourself: ‘you need to rest’, ‘Yeah, I know, but I need to go to work/sort out the laundry/write a shopping list.’ And, ‘whoops, there goes another coffee cup, who’s going to clean it up?’
Sometimes you can cope with the conflicting advice you get from yourself, and then other times it tips over; you’re too tired to make dinner, you fall out of the shower and lie on the floor for over an hour, you take yet another day off work and worry about your income. It is Just You.
It doesn’t help when you’re also too damn proud to ask for help. I’m fortunate in that I know I have that back-up should I need it, but it still makes day-to-day living hard at times. My long-suffering Boss sometimes takes me to pick up my prescriptions, drives me to the shops for food and is always on hand to fix a blown fuse or a broken washing machine. But back at home, when the door closes, I know I’m on my own.
It’s tempting to slide into another Pity-Party-For-One, and I always fight against it – I held one for two years after my diagnosis and I don’t want to revisit those dark times.
I wish there was more information about Living on Your Own with MS. Many of us do. We muddle through.
And of course, there’s an upside – I’m eternally grateful I was on my own when I fell out of the shower. The thought of being discovered clutching a bunch of cotton buds, naked save for a small towel brings me out in a cold sweat.
This is where social media comes to the fore – to send a little tweet out into the ether and have so many comforting replies is amazing.
We may live on our own, but are we still part of a bigger network?