Carolynne’s story – life during lockdown

"The biggest challenge for me is I’ve not got a lot of freedom in my own life."

I’m Carolynne and I’m my daughter Freya’s carer. She has severe cerebral palsy and severe respiratory problems. So me and a team of NHS complex care nurses and a couple of SDS staff look after her. It’s been intense during lockdown. Imagine sharing your life with a lot of different strangers, not being able to leave the house.

I’m the project manager, I’ve got wages to do, rotas, stock to order and medicine to keep on top of. It’s not the actual caring that’s hard, it’s everything that goes around it. The biggest challenge for me is I’ve not got a lot of freedom in my own life to go and do the things that I’ve dreamed about.

I did have a bit of a breakdown, everything was overload.  At the beginning of this year I bought this bike. I thought this is something I need to do and I started going out on it. During lockdown I just loved it, every day to have that sense of freedom. I can get out in the fresh air and be in touch with the community. I think that’s the big thing about cycling, as a carer you’re isolated but if you’re out on your bike you’re saying hello to people when you’re passing, that’s important. People need that in life. Cycling is a positive for me. It’s improving my mental health.

Art therapy has also helped me. My friend asked me if I wanted to go to an art class. I actually had the best day. I painted a picture for Freya of a wishing well and a sunflower. I went to more classes and spoke to people and what happened to me was I started to have confidence in myself again. My dream is to roll art classes out across carers centres. I’ve started college to learn more techniques and how to train people.

Between art and cycling I feel so much better about myself. It’s all about having choices. Every carer should have a dream and it should be supported to be fulfilled.

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