• Here we go, things really popped off.
• Monday morning, despite the many good vibes sent my way, things were yet again worse. I ached so badly it was too difficult to sit up and drink water much less get up and even heat up some food in the microwave. I was in a really bad way. Temperature worse, rash worse and now my mouth is swollen and sore with bumps throughout. I went to A&E, this time pretty sure I wouldn't be sent back home.
• The doctors started lining up tests, putting me on a drip feed and admitted me to hospital. This was not mumps, they said, and this was not impetigo, it was something else and it was unknown.
• The antibiotics made it worse, it's added a secondary rash and I'm to stop, they said, 7 minutes after I'd taken one more dose.
• Life in 8 North, the Medical Admittance Ward. My mouth is too sore to eat and they don't want to give me medication yet so that they can take biopsies of the rash in its pure form. They tell me I've been taking too much pain medication and won't give me as much so I'm still in pain. I squirm and cry in my bed with my blue curtain in a room with 3 others.
• Tuesday I'm given steroids and within hours my mouth becomes its normal size again. I'm given medical mouthwash that's like paint stripper and rips off all the loose, fleshy layers of my mouth that the sores had formed. It's still too raw to eat and swallow.
• The steroids take away the pain and the fever. Other pills and lotion help with the intense itching—I must itch to live. The rash is in my hands and feet now, the doctors say it had already begun to advance there before the steroids started. My hands swell up and are covered with 3,000 small bumps. The itching is like fire.
• Doctors come in and out every day, they mention they've "heard about" me. They ask if I'll consent to medical photographs being taken so that my condition can be used to teach students (of course, anything for science).
• I get used to nearly undressing for every curious member of staff that comes to my bedside.
• The doctors are taking loads of blood each day, each day some measurement goes in the wrong direction: my white blood cells, my allergy markers. But inflammation markers, which had been very, very high, were down. At least there was that.
• But they cannot find a source of infection, anywhere. I was even given a full eye exam. Nothing! It's my body doing it to itself, they say, the trigger is inside of you.
• I have Dermatology, Rheumatology, Infectious Diseases and Medical Doctors all looking after me. All bewildered. All telling me slightly different things.
• Friends come to visit and by Friday I have a normal mouth again and can eat food. I like that someone (a nurse assistant) brings me porridge and coffee in the morning.
• Eventually I get a private room on 8 North, then a private room on 11 West, the Infectious Diseases Ward. It has a nice bathroom and a better bed.
• The steroids are working, the doctors say, the secondary rash is improving. My body, however, is still 80% covered in lilac spots as if a can of paint was tossed on me or if actually being a polka-dotted-person is a thing.
• I cancel the neurology appointment I was meant to have to follow up on why my left leg sometimes disappears on me and I cancelled the week-long holiday I'd booked to celebrate being done with being ill for 3 months and having all of my December holiday turn into sick days.
• Here's what I should have packed before going to A&E

Published on — Fri Mar 24 2023