‘It’s a small thing but I know small things make a huge difference to me.’
I wake up in pain, and I go to bed in pain, but throughout my days there is so much that makes me happy.
My PA (the posh modern term for a carer) comes in and it’s brilliant. She’s learnt that while I look totally fine, everything hurts. All the time. I know she believes me – which is always the challenge with an invisible disability.
We get on with so much, it might just be stuff around the house, but with her help I live in my own home, by myself. That makes me so happy! While the help is super, when my carer goes I can do what I like. If I’m tired I can go back to bed. If I’m feeling great I can potter in the garden. In the middle I can watch TV and do a bit of craft.
I’m a member of a ladies group and it gives me so much joy. When I got more poorly and stopped working, many friends drifted away. For some reason these ladies stuck with me. We meet once a month and if I can make it I’m really happy! In between meetings they come here for coffee – we have a good natter and that makes me smile inside. When they go I feel so uplifted and jolly.
We try to do things for charity. I can’t knit and sew like I used to but I still contribute in smaller ways. It might be sourcing some cheap yarn online, or just coordinating the ladies, but doing something for someone else makes me so happy. It’s a small thing but I know small things make a huge difference to me.
‘My PA (the posh modern term for a carer) comes in and it’s brilliant. She’s learnt that while I look totally fine, everything hurts.’
I also love my tiny garden. With help I have pots growing flowers and vegetables. I adore seeing them grow and change. Even better when you get to eat a tomato you’ve grown yourself! If you have no outdoors you can grow tomatoes on the kitchen windowsill. There is always a way.
So, I’ve found the way to be happy is obviously to have good medical care and to ideally be out of pain. But even with all the restrictions I face I feel like a happy, decent member of society. Yes, I no longer work and live on disability benefits. But when I worked I paid my tax and national insurance to help those who needed it. That’s what a decent society does. Unfortunately I now need that help but that’s how it works.
I may no longer have a job, but I have wonderful friends, regular meet ups, the ability to help others. I feel part of a group of likeminded people and it’s wonderful.