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!
1999: Saturday – up at 7, but mum wasn’t having any of it and refused to get up until 8. We did a bit of hoovering and cleaning – well mum did – I watched T.V. Mum knew my eagerness to do housework would wear off eventually but she wasn’t actually expecting it to happen until my teenage years. We went swimming at Maldon and I made mum laugh in the car – I kept on tutting and saying ‘on mate’. I don’t know what was so funny, I don’t laugh when she shouts ‘oh come on mate, get a move on’ and other choice things. We had a good swim; with slightly less air than usual in my arm bands and I kicked and moved! We went to Donals and then to see Aunty Eesa and the girls and Dandel and I had a right giggle playing. Mum says she is so proud of me because I have done all this without a nappy (I won’t tell her about the big wee in the swimming pool).
2019: So its a shame about Notre Dame catching light on Monday (and hats off to the amazing firefighters who put out the blaze) but am astounded by the money raised. As the Archbishop of Bantebury says: Imagine if Grenfell had some really important stained glass windows and examples of gothic architecture, instead of just human beings . Contentious I know, but I couldn’t agree more. Kinda puts things into perspective
#swimming #driving #lazydays #saturdays #NotreDame #facebook #fundraising #Archbishopof Banterbury #Grenfell #macdonalds #swimming #toddlers #adults #pottytraining #firebrigade
1999: Went to Edon’s and screamed and cried when mum left. How can she still walk away? She must have a heart of stone. When she picked me up later mum said we were going to Donals and then on to see Aunty Karen and that I had to have a nappy on. I didn’t want it though and when she picked me up to leave; I bit her and slapped her 3 times in the face. I think she was a bit upset, but so am I, I’m fine without my nappy – and I proved it. We drove straight to Karen’s – no Donals now – and I fell asleep in the car, AND stayed dry the whole time. We went for a walk to the police station and I posted a letter through the letterbox. It was great, loads of police cars and vans, didn’t see any policemen though, which was a bit disappointing. Mum reckons I won’t be so eager to see the long arm of the law when I get older. When we got home I did a wee on the toilet and didn’t have a nappy on at all this evening. Mother you have to trust me!
2019: Jesus! I look back at this and other pics and see how ill I was with my Crohn’s 2 years ago. I was losing weight even on steroids. I have come a long way since then and since surgery. Am not liking the thought of immunos again due to fear of sepsis return, but nor do I want to be so uncontrolled. Hoping to start injections when I see the doc next week. Hopefully I will then have a better physical and emotional control on things
#mentlahealth #crohns #IBD #physicalhealth #growingup #toddlers #adults #weight
1999: Mum’s feeling a bit worse for wear this morning, so she lay on the settee and I let rip in the lounge. She let me have my last Easter egg for breakfast – well it is Saturday, and mine lasted longer than hers did! I got dressed and went to play in the garden and oops! – made a mess of my pants. I ended up in the bath, which I didn’t consider very fair as I’d only just got dressed, and needed an afternoon nap. We had a joint dinner and lunch at 3.00 and then walked to town to buy some milk and ‘duice’. I also got a packet of wine gums (named after me apparently) and we sat on the wall watching the boys on their skateboards. I walked nearly all the way back but had to have a piggy back some of the way (which I thought was great fun but mum didn’t seem so keen). I played in the garden and I got extremely muddy as mum was washing all my garden toys and I was helping. Our nicely mown grass is now a mudslide. Yippee! Watched Lion King again tonight – the things I have to do to keep mum amused
2019: Mum came round for dinner tonight but I forgot that the sausages weren’t gluten free so I cooked the chops she had to pop to the shops to buy. Made the mistake of telling her my Crohn’s is really playing up (like she didn’t know anyway) and so ensued the “make sure you go to your appointment”/ “I will if I’m not working”/”Well you wont be working if your back in hospital” conversation! My bad ………. Still. I ended it b putting Ant-Man on. Still having to entertain her.
#crohns #IBD #hospital #antman #Lionking #movies #cooking #dinner #easter #chocolate #
1999: Nan and Pa stayed the night as mum has apparently gone out on the town. I’m sure that must mean something more than just standing over the town centre for the night, even she’s not mad enough to do that. Mum picked me up from Edon’s at midday and when we got home Pa was doing more work on the garden – building a nice new gate and bin store. Great more workmate stuff for me, but my helping hand seemed to make Pa work slower for some reason. The health visitor called this afternoon for my 2-year check. She asked mum lots of questions and measured my head. She said things looked fine – including the temper tantrums, which are apparently perfectly normal. Yippee! Permission from the professional to strop!!
2019: Thank goodness for Pa teaching me so much so young, as being handy has helped me over the last few months bringing the pennies in, even if it is exhausting. I don’t think anyone taught me about tantrums but they still seem to come naturally – especially if Im hungry or tired. Feed me NOW!
#toddlers #tantrums #building #woodwork #construction #nightsout #family #food #sleep #parents #grandparents
1999: Back to the usual grind today. Awoke in mum’s bed at 7, had milk and a cuddle and then it was all systems go go go. Jumped in mum’s bath as she got out. Went to Edon’s, where potty training didn’t go too well according to the adults. Who wants to waste time sitting on a silly plastic thing when you can just pee on the go? When mum and I got home tonight, Nanny and Pa were there and Pa was putting a lovely new fence up. I helped of course, fetching screws and things. I also played in his van and climbed up his ladders. This was slightly more difficult second time around as I had had to put my own wellie boots on and they were on the wrong feet! I got very grubby and ended up having another bath, which I didn’t mind as I got to show Nan how I can get in and out all on my very own now.
2019: How I used to love Pa’s van and climb his ladders. Off labouring today and up work ladders – boots on right feet but tricky when hodding. Home via mums to pick up some bits for our moving in party tonight and then home to tidy up under strict instructions of the missus who is working until 8pm.
#party #moving #pottytraining #toddlers #adults #growingup #building #labouring #vans