I’m continuing my story… In August, me and my family went on a one month holiday back to our home country. I was ok, my skin wasn’t constantly itching. I wasn’t using liquid paraffin anymore but emollients that were a bit more…life friendly since about July. The flight was bearable, we had wing seats though but there are some nice pictures if one can look past the huge metal wings… This trip was booked months ago, in March or so and I hadn’t been unwell – I was looking forward to working hard, making it through my 3 months nursing placement and then relaxing for a whole month on a tropical island.

A week within our 4-weeks stay I started getting a headache. I thought it might just be the change in weather (it was hot and humid), so I drank loads and tried to take it easy while wearing sunglasses. Then the headache became near constant and lights hurt. I wore sunglasses all the time… Meanwhile I got little spots on my hands, and my face was a bit puffy and maybe that was a rash again? But why, I had stopped that drug that had made me sick… how could this be Steven Johnson again? We went to a doctor who prescribed some prednisolone and said it could possibly be a reaction to something I ate. Why not, I’d been eating many random things. So I took my meds, and had a blood test. All was fine. Except me really. That migraine was a real bummer.

Well to summarise it, there was 2.5 weeks left and I was bed bound. Something was happening but nobody knew what. I lay in bed, mostly sleeping, having funky fever induced dream for the rest of August 2015

Here’s a little anecdote about my third stay in hospital. (you can skip that, but its kinda funny) It was when my parents decided this fever, migraine madness was…well..madness so round about 2.5 weeks in. The following is blurred accounts and things I’ve been told. I was pretty out of it. I was driven to an A&E, we were told there were 2/3 people in front of us which would mean a wait (not sure how long). Parents decided that wasn’t an option so I was taken to a private hospital. I was covered in ice packs. Neck, armpits, head, etc.. it was so..so…cold and I didn’t want it. And the light hurt my eyes and I felt all around unwell. I was admitted to this hospital. It’s a pretty prestigious hospital, but this was a third world country. The bed was hand operated with a lever. I had an MRI but I was shivering so hard, even in my silly state I could imagine the pictures would be ridiculous and useless. (I had had an MRI previously and knew you had to lay very still). The doctors found nothing, in my blood, or MRI or whatever, they wanted to do other things but this was a private hospital, it was going to cost…A LOT. In that hospital I spent a night. I remember an old lady sleeping across me. She was calling for a nurse. Quite loudly. “nuuuuuuuuuuuuuurrrrrrrrrsssssseeeeeeeeeee, I neeed to peeeeeeeeeeeeeeeee” over and over again. And then a nurse FINALLY came to say something like “you have a nappy on! You can just go”. The old lady kept calling for I don’t know what and I think I..couldn’t sleep so I replied. And I remember being dragged into a conversation that no sufferer of fever could deal with. I don’t remember what it was but she wanted me to help her or do something and I couldn’t. I just remained REALLLY quiet and I don’t really know what happened then it was morning.

So parents ask for me to be discharged and I stayed at some relatives until we left. I slept mostly. I have blurred memories of visiting a Chinese person who did I don’t know what to me…some kind of massage or something. Then later an Indian lady gave me a massage. It was tough, nothing was happening, I wasn’t on medication except for paracetamol to get the fever down; but it felt like I needed to get better. They were making me drink all these plants, and eating all these foods but no change. Don’t worry though, there wasn’t much in the section of “caring about other people” I couldn’t walk anymore or brush my teeth, I really was past the “I should try my best to get better for the sake of all these people around me” stage and very past the “hundreds of pounds have gone into this trip, I must be better” stage. I don’t mean that in a bad way but I was pretty much constantly feverish for 3 weeks straight. Nothing mattered anymore.

Finally it was the day of our departure. I helped with exactly NOTHING to do with packing. I sort of got ready, it didn’t even matter that I was about to cross the world on airplanes and needed to – you know – GET READY. I just went with the flow. I hadn’t been out (or even downstairs) for days. Going across the world or across the street? Same ting yo! Then came having to go down the stairs of my uncle’s place to the car. Imagine this: you’re a very smart computer that knows the action of moving legs to go down some stairs, you’ve done it before, but this time, there’s like a gap, missing software, between your brain and your legs, error of connection or something. I knew what I had to do but my legs weren’t interested. It wasn’t paralysis. It was just…inability. It was quite funny. It was fascinating. (Read on to find what it was)

Finally we make it to airport and family is there to say goodbye but I’m in a wheelchair and cold because we have to wait I don’t know how long and we’re near the door. So I’m cold. On a tropical island (heh fever, such a funny guy at this point) and these family members are here, great people that I’ve never met before but I can’t even say goodbye properly. I think I did my best. (And we talked again on skype anyway). We got on the plane. I had to get up, step over into the plane, and walk to my seat. Not an easy feat. A 12ish hour journey ahead. After the shivers comes the sweating in feverland. I’m pretty sure I started pulling at my clothes while sitting next to my mother and kicking my shoes off to take my socks off etc…

Really, if you feel sad/appalled/anything like that at reading this. Don’t. Or stop. Because I’m laughing right now. It’s just really funny. I love life and that I was able to experience all this. We are amazing, us humans, I don’t remember much (HURRAY FOR FEVER!) and so I’m not suffering, it’s funny. And I’m glad I got to experience such things, it made me into the person I am now, it gave me immense experiences and tested my limits and beyond.

We get to Paris, France. What had been organised was a coach trip to another airport to then take a flight to London. I was wheelchaired out of the airport and then had to CLIMB THE EVEREST that is the few steps up a coach. I think I leaned heavily/was dragged up, sat down and passed out (not medically, just slept, the only think I was good at at this point). We got to the other airport and there wasn’t much time until our next flight, but there was no wheelchairs available. The airport staff were amazing, one man helped me down the coach, he carried me on his back. I was settled down somewhere just outside the airport while dad tried to figure out where it was we needed to go and to check the luggage in (because luggage transfer wasn’t part of the airport change deal). What saddens me a little is how I was supposed to be helping out with all this lugging around a six-people-clan-one-month-holiday bunch of suitcases and hand luggage but I was busy sitting outside the airport on the day.

When finally we managed to get a wheelchair, an airport staff whizzed us through the airport, passing security at lightning speed. We got to the check-in for our last Paris-London flight about 15 minutes before the flight departure time. THANKFULLY they accepted us and allowed us to check in! (oh good people of the Orly Airport, you are all awesome) The staff member then proceeded to take me and my mum (accompanying) downstairs to the tarmac where the planes are, and get me in a special chair and carry me up those flight of stairs. I guess I then slowly made my way hanging on to seat headrests. I don’t really remember that flight. We got to London City Airport and then there was getting home. Part of my family took a bus home and me and dad and the suitcases waited for my dad’s friend to pick us up in his big car.

This was Friday afternoon, during Friday late night I went to that same hospital from part 1. I was unstable on my legs, had a fever (when did I not have a fever), got blood taken from me. I also had to pee in a pot, already using the bathroom was pretty Extreme Adventure and now having to pee in a pot? I was admitted, doctors had no idea what I had. I had a special test but the virus was already all dead, there was just an elevated white blood cell level which indicated a viral infection. I also had an MRI which showed an inflammation of my cerebellum which caused the loss of balance and coordination. Everyday a neurologist consultant (big shot doctor) and/or his minions/underlings would come and do neurological tests on me like making me follow their finger from side to side, push against them with my hands and feet, clap my palm/back of hand against my other hand really quickly. I also had trouble with my thyroid so ended up under the endocrine department. That stay in hospital was longer than a week and I had a room to myself with an en-suite bathroom (at some point they thought I had a strange illness and everyone was wearing gloves and aprons and facemasks but it was a false alarm).

Well, it’s the end of January now, I just reread what I wrote nearly a month ago, I’ve been putting this blog off for whatever reasons, but I think it’s time to finish it.

I highly dislike hospitals, I wish on nobody to have to stay there and I definitely don’t want to ever go back. Coming home, I slept most of the time, slowly slowly started regaining the ability to walk and go up/down stairs. Eating was a struggle, I’d take an hour on average to eat a meal. I remember having to reheat my food in between because that’s how slow I was.

I don’t know if I’ve said this, but I felt “better” around mid/late December. There’s so many people I’m grateful to for this. Now its January… I’ve only got some slight problems with feeling dizzy. I’ve started to play basketball again which is amazing to me. (Nearly had been a year). I’ve been trying to look for a job and think about what I want to do with my life.

I was blocking out turmoil during that time. My life was suspended. I was pretty lost, I looked for easy ways out. It just gnaws at you. I could have done things while I was recovering, but I didn’t. I could have read books, listened to audio. But I didn’t. <<– I wrote this sometimes in December I think, it’s the end of January 2016. I feel like deleting it. I suffered, why should I give myself a hard time about it? But this is supposed to be a reflection. I tend to easily forget the bad things that happen in my life. Some of the “sad” bit I wrote back in December, I deleted now in January coz they didn’t feel important.

Right now I’m thinking about what lessons I can take from those past few months but really… I think I have to get on with my life and the lessons will show themselves as I experience life. I just have to keep paying attention. It’s like reading “Le Petit Prince” very young, you have no idea what’s happening but it feels like there’s a message in there, however long your 10 year old self might sit there and “reflect” nothing will happen, only if you stay astute and live open to suggestions and to new interpretations will the lessons uncover themselves…everything that happens, shapes me somehow…and thus. I am.

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