Protecting myself - COVID-19

When I first started writing this blog, I felt like it was a bit of a selfish blog to write considering everything that is going on, but I feel like it needs to be written because, as parents, if we don’t protect ourselves, we can’t protect our children.

Most of us Duchenne parents have been really worried about COVID-19 for a while. We are worried what this could mean for our children if they caught it. The scariest thought that goes through our heads is could this kill them? No parents should have to have these thoughts in their heads but, like most of you, I was terrified by the death of an apparently healthy 13-year-old boy from London. It’s awful the mental battles we are having to face as parents of vulnerable children.

For a lot of us at times, the uncertainty has sent our anxieties through the roof. We are daunted and feel great sadness that we won’t have access to our usual support networks of schools, carers, friends and family. How will we will cope for the next 12 weeks?

It was around March 22nd/23rd I realised that my mental health was really suffering.

>We had taken Jack out of school on March 9th because we were worried about him being exposed to too many people at his school who might unknowingly have COVID-19. It was a difficult decision because if we were going to effectively protect Jack, we also had to remove James from school and stop him playing football which he loves. Andy also had to make the difficult decision to shut down his company and furlough his staff. We were worried about what would happen to us financially.

COVID-19 was impacting our whole family. I questioned and tortured myself. Were we doing the right thing? Were we overreacting? There was no clear guidance from anyone, and there were a lot of mixed communications coming out from different sources. At that point it was even hard for people to work out if people with Duchenne were in the high-risk group (that has been clarified now and yes, they are). I really felt communications were terrible from the Government and felt frustrated that we couldn’t get clear cut answers to be able to help our community. The uncertainty drove me crazy.

I wasn’t sleeping well. I stopped exercising and was eating so much rubbish my skin was terrible. I felt really worried about Jack and everyone in our community. I read articles on the proposed plans for deciding who if the hospitals are overwhelmed gets treatment and who doesn't. It made me feel physically sick with worry for our adults living with Duchenne and angry.

I was getting really frustrated with everything and everyone. I would be lying if I said I wasn’t losing my temper.

I was trying to be a supportive wife to Andy with his worries, a mum to my boys, trying to homeschool them in subjects I haven’t studied for more than 20 years, and trying to carry on working. I was working more hours than ever trying to support families who were understandably struggling and confused (we all were). At times like this, I know how much we need each other but the truth is, in that two-week period, I didn’t know if I was coming or going. I was getting up at a ridiculous time to try and fit everything in. Spinning plates and dropping them left right and centre. I felt like a complete failure and was beating myself up about it.