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Protecting myself - COVID-19

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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.

 

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As you can see in the picture between March 9th and 22nd, when all this was happening, I had pretty much stopped exercising. (If you don’t have an apple phone the red rings represent your movement and the green rings show your exercise. You get a green dot when you hit your 30min activity target.)

Everyone has their coping mechanisms - mine is exercise. It’s how I release everything that’s built up inside of me. Whether I do body combat and literally kick the crap out of something that’s got to me or challenge myself with a high intensity workout or run, I always ask myself ‘do I have the grit to hang on to the end?’ Or even a yoga session to try and clear my mind of all my worries, that’s how I cope.

Where am I going with this? On March 22nd, I stopped and realised I needed to change what I was doing. I re-evaluated what I was doing and made some decisions to try to help improve my mental health so that I could be a better person for everyone and get back to trying to help others which I love doing and which actually gives me the most happiness.

 

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  1. I decided to start exercising again. My challenge for April is to do 30 minutes of exercise a day and get a full screen of green dots. I am trying to do my exercise outside - we all need fresh air. I make the kids go and play in the garden every day. Jack’s been busy doing his gardening and Andy has challenged himself to painting a fence panel a day. Our garden will be immaculate by end of this.

  2. I made a plan to try to organise myself better with work and homelife. I don’t stick to it religiously but it gives my day a structure.

  3. I am trying to make sure we still eat fresh food though this is getting harder. The NHS England and our GP still haven’t sent us our letter to identify us as high risk so we can access to the extra support we should be able to get. We were told this should have arrived by March 30th. I am now working with Jack’s social worker and our MP to try to sort this out. This really isn’t something I should have to be doing.

  4. Homeschooling two boys with different needs has been my biggest challenge. I don’t think Andy and I realised how dependent Jack has become on his learning support assistant and how much he struggles. At first, I got frustrated that he couldn’t grasp things, and mad that something which should take 20 minutes was taking an hour. We have decided to change his learning while he’s at home. No offence to his French teacher, but me translating songs in French for Jack is helping no one. He is going to focus on his core subjects and do an activity a day he loves. So far these have all been art based. He loved making Easter cards to send to his great grandma who is in a care home.

  5. I’m going to try using a meditation or mindfulness app. Jack uses Simple Habit and Headspace when he’s feeling overwhelmed. It does work for him.

  6. We are all trying to do something we enjoy every day. We love cooking. Andy, believe it or not, has been baking cakes. His carrot cake was pretty good. Probably doesn’t fall in line with the healthy eating plan but I deem it essential.

  7. I have stopped watching the news as much. As I shared in the week, I recommend the Netflix box set, Tiger King for complete escapism. Please send us any recommendations for new box sets.

  8. At Duchenne UK, we now put on a weekly webinar with experts. It’s on Wednesdays at 2pm. We want to facilitate them to answer your questions on COVID-19 and Duchenne. I have found the webinars really reassuring. Please join us - we want to make it interactive so please suggest ideas for topics you want us to cover.

  9. I am trying to keep off my phone late at night. 

  10. Talking to people is important. It’s easy to shut yourself off. I am enjoying groups chats with my friends about the trials and tribulations of lockdown. We might even be sharing a cheeky glass of wine on the House Party app. It helps to stay in touch with your support networks. I am trying to limit my drinking. I think it could be easy to fall into the trap of drinking every night

  11. I have also decided I want to learn something new. I am not sure what that is yet (perhaps it should be French so I get better at Jack's homework..)

    I don’t know if any of this is helpful but it’s how I am now trying to cope with the next 12 weeks.

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How You Can Help


There are many ways that you can help us to beat DMD.

You could simply donate online:

Donate by Just Giving

Find out more ways to donate to Joining Jack.

Take a look at this section to find out further ways that you can help us beat DMD.

 

JJ Merchandise


We're proud to offer all our supporters the opportunity to show that they are Joining Jack with our special JJ merchandise.

Click here to view all our JJ products.