We’re very grateful to 14 year old Mirri who has previously given us a real insight into what it’s like to be diagnosed with autoimmune liver disease in your teens https://childliverdisease.org/coping-with-liver-disease-at-school/ In her latest blog, she tells us how she fared on the expedition for her Bronze Duke of Edinburgh Award.
My name is Mirri and just over a year ago I got diagnosed with autoimmune hepatitis and was put on medication that still affects me on a daily basis. My fatigue and other symptoms made me and some of my teachers think that I should wait a year to do my Bronze Award, but DofE was something I had wanted to do for a long time so I didn’t give up and I have now completed my bronze Duke of Edinburgh award and I am hoping to do my Silver next year!
For part of the Bronze Award you have do to volunteering. I volunteered for CLDF and I loved it. I helped make quizzes and wrote blogs and I really enjoyed it. The expedition, however is an essential part of it and my biggest worry going into it was that because of my fatigue I wouldn’t be able to complete it and that my body wouldn’t be able to cope with the amount of walking I had to do and the environment that we would be in.
Luckily my school allowed me to have a day bag where I could carry my lunch and equipment for the walk without the extra weight of my sleeping bag and other things for the trip. This helped massively as there wasn’t as much weight on my joints (which I get pain in). Another accommodation that I got was that I could get taken to the next checkpoint by car throughout the walk if I got tired. However, I didn’t use this for a few reasons. The first was the checkpoints were very far apart, therefore when I needed help the most, we were in the middle of a field so I had no choice but to carry on.
The second reason is that my group weren’t completely understanding of my condition and felt it was unfair that I had the opportunity to do this and I didn’t have to carry a massive bag. Next time though, I would definitely use this accommodation and make my team more aware and understanding of my condition beforehand.
The best part of the whole expedition was that I got to be independent. After being diagnosed with a liver condition, I felt like I was always relying on the people around me but DofE meant I had the opportunity to do my own thing and it reminded me that I am just as capable as I was before my diagnosis.
The hardest part was definitely pushing through when I was struggling. At one point we had to use the emergency phone call to the school because of how I was feeling when we were less than halfway through. When I felt unwell I asked what the route ahead was like. Luckily the majority of the route was flat but if it was too steep or muddy I would have used the opportunity to go the next checkpoint.
At one point we got extremely lost and ended up walking miles in the wrong direction which at the time was very stressful but at the end of the trip we were laughing about it. Many of us (including me) fell into thorn bushes, ditches and streams. At the camp we had many cooking disasters and we got to the point where everything was hilarious. Whilst on the walk everyone agreed that they would love to go home but when we got back to school most people agreed that they had fun and would want to do it again. I would recommend DofE to everyone. Don’t let your liver condition put you off. It is a massive achievement and has made me feel much more confident with my condition.
