1999: Egg on toast for breakfast, on my request, but I then chose not to eat it. I wanted to go in the garden but mum said she would have to dress me first. She’s so particular my mum! I solved the problem by going and getting my dressing gown. Pyjama’d wellied and gowned I played. Had a nap but woke after an hour as I needed to wee and then went back to sleep (after having weed in the appropriate place) This afternoon we went for a walk over the town with mummy’s friend Al (who actually ended up carrying me most of the way). Mums beginning to panic now as we have a wedding tomorrow and I still don’t have an outfit. We managed to get a pair of shoes – I measured up as a 9 but mum thought these were a bit big and we managed to get a pair of 8 1/2’s which looked slightly less like flippers. No luck with the rest of the outfit though so we went home, had some toast, and then headed for Tesco’s in Pitsea. All mum wants is a pair of black trousers for me but there was no such thing in sight. She eventually managed to get a pair of brown combats, a shirt and a jumper. When we got home she decided I could wear my white shirt, black leather waistcoat and check trousers – all which have been hanging in my wardrobe all day long. Women!
2019: Less hectic but still sleepy day today. Drove to the hospital with trepidation and excitement to start my much wanted Infliximab infusion. Some needle issues due to dehydration (I will drink more next time) then we were away. Even got lunch just before the hour end. Two hours of observations, tired , woozy but then free to go. Now heading home for a long sleep ………….
#crohns #kids #parents #weddings #infusions #infliximab #mentalhealth
The Way it Really Is - Then and now 