From April 2015 till now (December 2015) a lot has happened. I’d like to say what I’m writing isn’t complaining. But I’m not sure. I don’t want to make anybody sad while reading this. I just want to give an insight. These illnesses were strange. I’d rather you be inspired or fascinated by the following few posts, I’m well now, and this is life, this is what happens. I can only learn from it all, grow from it, gain from it. I will hopefully internalize these experiences and learn many things, grow and strengthen my character, gain empathy, understanding, a feeling of peace with the world; not anger at things I can’t help. I will look beyond what happened, at what I CAN LEARN here. Otherwise, this would just be a wasted experience.

I’m not a very good writer, especially with something I haven’t yet encompass with my understanding, I haven’t yet handled and “internalise” but I feel it needs to be written. Even if it’s just as memoirs for my own sake.
In my last post I mentioned Stevens Johnson Syndrome. This was an allergic reaction to the medication I had tried. I had a fever and when I started to tell my parent that if I “sorted the noodles from the vegetables” then the “fever will go” I was rightfully put in a taxi and shipped off to hospital. It was early morning so there wasn’t many people there. I got admitted. I don’t really remember much. But I spent a week in hospital. First day was in a room of my own. I got a bit of skin taken for a biopsy. Then I got moved to a ward with three other people. I was still feverish so I hardly remember. My friend bought me a strawberry and cream ice drink from Costa. I don’t really remember it. But later during the week when I was getting better I mentioned to her how we should go get that strawberry and cream drink I had told her about before I got sick. She gave me a weird look… “you already had it…I bought it for you the other day…” Well then…

I was then moved to another ward. I never really saw the person next to me, and she had this male visitor over, I always wondered what their relationship was, married? Dating? Professional? I could never figure it out. (I guess this is how you pass boredom?) There were two elderly ladies opposite me. One was pretty sharp and mobile, the other was…less so. She’d call out in the middle of the night “Dave?” over and over and over again. And sometimes the sharper one would reply telling her Dave would come tomorrow. Still she’d call out every once in a while. She’d randomly say things like “DEAR LORD ALMIGHTY” or something along those lines with a heavy sigh, it made me giggle a bit, and it became a bit of a joke at home afterwards. She once got really upset that “Dave and Joy had been kidnapped and DEAR LORD ALMIGHTY WHAT WILL SHE DO?” Turns out Dave was her son (I think) and Joy was a cat/kitten. The sharper lady patient was always reassuring her and talking to her.

It made me think about old age, about losing your mind. People are often scared of death, but there’s so much between where you are now and death. So much.

My skin got a faint red-ish rash that slowly turned properly purple over a few days during my hospital stay. But it didn’t hurt or itch. It looked extremely cool. I was given a medication called prednisolone. All the test had been done and my condition was fine. So while discussing with dad we decided to try and get me discharged. It was Friday evening. This is the NHS, I don’t think anybody would have bothered discharging me during the weekend. So better get out fast. Me and dad packed all my stuff and we left in a taxi.

This wasn’t the end. It was really the beginning. My whole skin was affected. Did you know that the skin is the biggest organ in the body? I started peeling off in different areas at a time, but they all peeled eventually, from my knees, to my palms, to my eyelids. Yup, I did wear sunglasses out for a while because nobody should be inflicted with seeing flaky eyelids. I had like 3 different steroid creams to apply, as well as this very thick 50/50 liquid paraffin cream. I had a special shampoo for my scalp. It was pretty tough, not putting this paraffin cream led to extreme discomfort. Putting the paraffin on and having to put clothes on top of that led to… discomfort. (imagine covering yourself with Vaseline and then having to put clothes on)

So I was in hospital at the beginning of May, the rest of the month was recovery, so was June, July I was okayish inner health wise but my skin was still not stable. I write this near the end of December 2015. I can say my skin is “normal/dry” since mid December 2015. They did say it was going to take months to recover. The thing is, you aren’t in bed suffering, there aren’t really any physical symptoms like a fever or that cool rash. It’s just itchy skin, discomfort, having to look after your body constantly. There was many different creams and oils used to look for relief; coconut oil was tried and it was nice but after a while I realised my clothes got a really really strange smell. That didn’t help in the overall emotional health of things. Not only are you unwell in your skin, but your wardrobe stinks? Grrrrrrrrr-8!

I learn about gratefulness. For the past 20 years of healthy skin, for two loving parents, for a good family. I was stretched. To an extent I didn’t think possible. I thought being diagnosed with Epilepsy in my mid/late teen was tough, but seems I was destined for greater things. I don’t know the extent of those “greater things” I’m still trying to figure it all out. It’s still a big tangle of strings and I’m trying to untangle them all. Here I am writing those blogs, hopefully to help me with this untangling. We’ll see where this goes…


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