1999: As soon as the alarm went off I ran into mum’s room, turned off the alarm pulled back the covers and said ‘up’ and ‘dink’. I jumped into mum’s big bubbly bath, got dressed and we set off for Edons. During lunch Edon went to answer the phone and when she turned round to look at me I had my head back, eyes shut and my mouth wide open – soundo. Tonight we mowed the grass – me walking next to mum with my plastic mower. I helped for a little while and then let her get on with it. Well, in-between the ‘mummy, stop please’. She had to keep turning of the mower for me to tell her some tale or give her cuddle. It was good fun! We cut the front grass too, which was great because I got to ride my bike up and down our drive. Mum gave me tandoori chicken Masala for tea – which I promptly spat on the lawn. It’s a bit spicy that mum! The garlic and coriander naan bread more than made up for it and then mum peeled me an apple and made me a cup of tea. Mums realised how often she must say ‘what’ because I keep saying ‘mummy’ then saying ‘what’ before she gets the chance to say it!
2019: My running top has arrived. Buzzing to do my mountain Time trail up the second tallest mountain in the UK (Snowden). Hoping to do this in under 4 hours, at the end of July, raising money for @chrohnsandcolitisuk. Please donate whatever you can, lets fight this and be a strong community. http://www.justgiving.com/Mountaintimetrial
#crohns #timetrial #MountSnowden #sponsor #fundraising #gardening #indian toddlers #mums #parents #childhood #adulthood #IBD
1999: To mum’s at 5.30. After 20 minutes I got up, took my nappy off and got back into bed! We got up at 6.30 and I don’t know what’s got into mum, but she cooked us a fry up! I’ve been a very good boy today and haven’t had a nappy on at all, although I did do a poo in my pants! That was Edon’s report anyway. When mum collected me, things changed. When we got home the car seat was soaked. Oops! Mum wasn’t happy. I played in the garden and had a go on my swing – learning to push and pull – it seemed like hard work to me, it’s far easier just to get someone to push you. When I got off my wellies squelched – more wee – oh dear! Mum cooked a lovely stir-fry for tea with wriggly worms (noodles). I pretended to be a bird and ate the lot – even finishing off some of mum’s.
2019: Crohn’s is poo and I’ve decided to try and write a daily Instagram blog – Chronically_livingcd. Just thinking of my bio. Possibly something like this:
For years I was diagnosed with IBS and Monday morning tummy when mum had the control to take me to the docs. It wasn’t until November 2016, at the age of 19, that mum booked me a doctors appointment and told me I was going. She actually frog marched me there following days of diarrhoea and vomiting and the pungent smell that told her something was seriously wrong. The GP was amazing. She listened to my embarrassed talking about delicate matters and immediately knew it was IBD or Crohn’s. I did my poo test and markers were off the scale. By the time I was diagnosed the inflammation and ulceration was so severe that no amount of steroids or immunos could get it under control. But I did nearly die of sepsis – 3 days before Christmas. Luckily mum came home from work and knew (I didn’t mind her going into bossy nurse mode at that point – in fact I was too delirious to even know). So ensued 7 months of being unable to work, plans to travel to Australia cancelled, several hospital admissions and eventually a hemicolectomy in July 2018. Things had improved and I was able to do more but I ulcerated after just two months and struggling again now but considering the injections….
From IBS to Crohn’s, from immunosuppressants to sepsis, from ulceration to surgery, from more ulceration to injections. What a journey. Know the signs, get early diagnosis and treatment and look after yourself
#Chrohn’s #IBS #pottytraing #toddlers #adults #intsagram #australi #travel #hospital #surgery #pottytraining
1999: We went to make toast this morning, but the first lot of bread was mouldy, so I fed it to the birds. Then mum burnt the next lot of toast. Eventually we had toast, bacon and ketchup. Mum went up to have a bath, I went up to join her and she had all this green stuff on her face. She did look funny! Something to do with making her look beautiful – I don’t know if I should tell her that she just looks very odd. We went to the farm this morning; I sat on the play tractor for 15 minutes before we could go anywhere else. We went to feed the sheep and I laughed because their tongues tickled my hands. I got a bit frightened later though, when the big sheep bleated, and mum had to carry me, which was just in time for me to get a birds eye view of a cow doing the biggest poo ever. I don’t envy her mummy having to clean that mess up. My mummy doesn’t know how lucky she is! We went to see the pigs and mum felt guilty about our bacon and toast this morning. I don’t know why because they stink! We spent time in the ball pit and soft play area and when we came out mum tried to get me to put my coat on. Eventually she told me that I had to put it on as it had my sticker on for the farm. Is she really that daft? Look all you have to do is peel it off and stick it on my jumper! What’s so funny about that then? Tooth count up tonight – 10 top and bottom
2019: Well trust me Crohn’s makes you poo just like that bloomin cow! I’m sure I love my bacon so much de to those smelly squealing pigs. I used to try and hold my nose and cover my ears when we went through the pigs bit of the farm. Pretty tricky with only two hands so I learnt to hold my breath. And as or face backs – Zof and I love a good charcoal one!