July 26th – Good Good Good, Good Donations

1999:  I slept right through until half four this morning, when I woke up in my own bed and was alive and kicking.  Mum still wanted to sleep and after several disruptions to her shut eye she shut her bedroom door in my face. Charming!  By the time she got up – 45 minutes later – we were back on talking terms.  I jumped in mum’s water and drank all her tea (except 3 mouthfuls which she’d managed to swig before I got my mitts on it – gonna have to speed up my tactics). Went to Edons and when mum picked me up she had a tricycle for me which one of her staff had kindly donated to our cause!  Mummy let me ride it out front for a while and then we went round to the back where I found her a lovely feather (the first of her collection) and it wasn’t long before the hose pipe came out.  I surprised mum by counting to twelve in the bath tonight, following which we both fell asleep on my bed at 7.15

2019:  A long drive from Lowestoft in Suffolk in Bala to Wales ready for my Snowdon run,  Staying in the home of a musician through Airb&b. The alarm is set for 4.40am. The day has come round so quickly and I am soo literally nervous and I have no idea why. I have absolutely smashed my fundraising target which currently stands at at £685 towards Crohns and Colitis UK, and now to absolutely smash this mountain.  Hopefully gonna be setting off at 6 am tomorrow and provided all goes well i’ll be returning at some point before 10 am. This is more nerve racking than when I was waiting to go for surgery. Time to show the world that us people with chronic, invisible illness are the most strongest physically and mentally set people! I’m not just doing this for me, but my friends, family and everyone in the invisible illness community. Thank yo to everyone who donated and thank you to my family who have come along with me  to be waiting at the end with a long, stiff drink!

#toddlers #childhood #mums #childminders #adulthood #crohns #crohnswarrior #notalldisabilitiesarevisible #ibs #crohnsdisease #mountain #snowdon#wales #snowdonia #trek #family #crohnsandcolitis #fundraising #lowestoft #suffolk

Post navigation

June 12th – The Big MAP Shave

1999: I woke mum at three shouting “mummy, mummy, mummy”.  She came to, to find me falling out of her bed (she didn’t even know I’d got in).  She managed to catch hold of my legs and pull me back just in time.  Mum made cooked breakfast this morning, but I only ate the bacon.  It’s rainy but warm this morning.  I didn’t want to go swimming – I wanted to go to the park.  Mummy took me to Whacky warehouse which was good fun.  I put 20p in a machine to get some Jooster sweets but I opened the door too early and they fell all over the floor so we had to try again.  40p for 11 Joosters and mummy ended up eating the lot because I didn’t even like them!  Mum bought me a new pair of trainers and a big boy’s booster seat (which she now feels was a mistake because I discovered a new game – undoing the seat belt whilst in transit!) and an Action Man bag to take my many changes of clothes to Edons.   I had a bacon roll from the burger van (well two bites) and a can of lemonade which I was apparently meant to share with mum! Oh well, she got double bacon roll – even if she didn’t actually want it. 

2019: Mum text me today as just realised, the date I’m running up and down Snowden for @crohnsandcolitisuk, is the same day she had her head shaved to raise money for the MAP Vaccine. This is a potential cure for Crohns and is in its second phase of human trials. Corina and Lukes Big Map Shave raised £1112.03.  MAP (Mycobacterium avium subspecies paratuberculosis) is proven to cause Johne’s Disease, an inflammatory bowel disease affecting livestock and is very similar to Crohn’s disease. It is thought that thid is passed to humans in pasteurised milk and the only thing that kills it is sterilisation, but I just done like it!  MAP has been found in 92% of Crohns sufferers with a test developed by Prof. Hermon-Taylor , Kings College London. His team have developed a vaccine to try and eradicate this.  A potential cure for over 4 million sufferers worldwide, including  1.2 million in the USA and 250,000 in the UK. For more information on Crohns and this fascinating research and the vaccine go to http://www.crohnsmapvaccine.com/

#toddlers #mums #parents #burgervans #playareas #crohns #mapvaccine #crohnscure #IBD #Colitis #childhood #adulthood #kingscollege #chronicillness #cattle #milk #Johnesdisease