September 12th – Putting on a Face but Infliximab, at Last, Makes Me Truly Happy

1999: Awake at four and restless until six when I got up (well, banished to downstairs actually).  Mum eventually dragged herself up at 7.30 – God, she looks rough this morning.  We spent the morning in the garden in my house, on my slide and swing.  I helped mum mow the grass and later we made big bubbles with a bucket of soapy water and a racket (I didn’t hear any noise though).  Today’s plan was for us to go to Children’s World for new shoes, trainers and a wedding outfit, but I’m feeling a bit poorly and very tired.  I fell asleep on the settee at half two and didn’t wake fully until four when I wanted to go for a “little walk” to the “tunnel”.  So off we set down the alley way to the tunnel, where we heard our echoes and then came back.    Half an hour later we were in the car and off to Donals for Josh’s birthday party.  I had great fun and had my face painted like the “Lion King”.  I was very sweet and well behaved and mummy watched on proudly.  We got home at half seven, had a bath where my measly mummy washed my new face off.

2019: Well today saw me putting on another face. Dressed up as an astronaut for a video promo in Norwich and pretending everything is ok. This got me wondering how astronauts poo in space without gravity? Would it be helpful with Crohn’s? Anyway, the whole day and the pretending was exhausting but I made it through. I got home to a hospital letter saying that my Infliximab will be starting on 25th September. Although my mood remains low, I am excited to start these as have been pushing for so long to try and change from the horrendous Azathioprine. One surgery down, two lots of medication trialled, Five endoscopies/colonoscopies done, 2 bariums down, admittance for septicaemia and fungaemia, 4 admissions for flare ups and FINNALLY they have listened. Just goes to show having the right IBD nurse goes a long way

#chrohns #mentalhealth #anxiety #depression #toddlers #mums #gardening #parties #birthdays #infliximab #outerspace

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I may do stupid things and make light of them but deep down there’s a reason and I love exploration, even if I cannot fully understand the outcome!

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