Sohana

My Day

by Sohana

At 8am I wake up to take five different medications and allow them to set in. For some reason there are two different things I am meant to take ‘first thing in the morning’ and wait 10-30 minutes before ingesting anything else, so I just do my best in that respect. Then I take painkillers and wait for them to work before I do anything.

The next part of my day is dressing changes. It’s always difficult to find the balance between doing them as thoroughly as possible while still getting through it quickly. In the morning, it usually takes one and a half hours unless I have a full bath change that I do every other day. This takes at least three hours from start to finish (with a shower 3 – 5 hours) and since starting uni often means an even earlier wake up as they have to be complete before my morning lectures. Mum drives in to help with these long dressing changes.

When I first started uni I would return to my accommodation to eat my special, supplemented and blended food and take all my midday medication. I was embarrassed and nervous about eating with people as attempting solid food took such a long time and often led to coughing or vomiting when something got stuck. I only recently started inviting friends round for dinner and some even blend food for me (along with a boiled egg which I eat daily for protein!).

It still affects my social life though, as I always need to return to my apartment for two hours of my second round of dressings, sometime between afternoon and late at night. I was not able to share a flat with other students due to concerns surrounding my condition, so I live with a full time carer when at uni, Lerry, who even helps me prepare for bed.

My day is painful, challenging and often completely unpredictable apart from the knowledge that I must be constantly vigilant and careful of what I eat, when I take my medicine, how I walk, sit, write and talk. I also spend around five hours a day dedicated to a skincare routine that I would genuinely not survivie without – celebrities and beauty gurus have nothing compared to my cupboards of products.

One aspect of my day that is also a certainty is joy. Sometimes it appears in the form of hope – the prospect of things improving – but these days it is normally real as I have not only survived to the age of 20, but grown into a person who gains confidence from what I endure, uses my experiences to connect with others and flies through the process of breaking down and healing – brushing the ash off my butterfly wings and continuing to live for as long as I can.