April 19th – Chronicallyliving_cd – Living with a Chronic Disease

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

April 16th – From Potty Training to Crohn’s Control

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

April 6th – Climbing the Dizzy Heights

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

 

April 5th – Mischievous Days

1999: Up at 7.00, no prizes for guessing where mum was.  Whilst she was asleep I pooed my nappy and decided to take it off, because that’s what she usually does.  Mum awoke to find marks all over my bed, my carpet and her bed.  Oops!  I had to have a bath and get clean and mum had loads of washing to do. We went to Asda and bought two packed lunches and set off for Danbury lakes.  We walked around and then put a rug on the grass to eat, but we both ended up with wet bums, as the grass was so wet that it soaked through the rug.  We fed the ducks but they weren’t interested so the fish ate the bread instead.  We played ball, I threw it backward over my head, and it rolled down the slope and now the ducks are playing with it!  We went for another walk and I climbed some trees.  Mum got a bit cross though because I kept throwing stones, and she got even crosser when one hit a young boy on the head. Oh dear.  Mum was very apologetic and luckily his mummy was very understanding and forgiving.  Not so with my mum though – we had to go home. 

2019: Bit of a crappy day (literally). Back and shoulder hurting from work. Popped round to mums and ran straight in to the loo. Crohn’s has really flared – suggestions from mum to drink plenty of alcohol, avoid fried and spiced food and alcohol. Good luck with that one – we’ve got a house warming party tomorrow night. Picked up my car from mums after taping the wing mirror back on (I knocked it off after three days of having it – not happy – cant afford to get I fixed so just keep strapping it up)

#sleep #potty training #mess #mischief #toddlers #growing up #crohns #IBD #party #cars #alcohol #food

 

 

 

April 3rd From Mischievous to Lazy Days

1999:  Hot cross buns and chocolate Easter eggs for breakfast.  I love Easter (and so does mum by the looks of it!).  We went swimming this morning and had a lovely ‘dim’ for an hour.  I got out of the pool okay, but mum had to fight to get me out of the lovely warm shower.  We set off for a walk to the local shop this afternoon and arrived back home an hour and a half later! On the way, we had decided to explore the alley way opposite our house thinking we could cut through to the shops, but it turned out that it led to the other end of our road (a dead end) and we had to walk all the way back again and start over.  Nice one mum.  I did find a great stick though and took it all the way to the shops and back – even though it was nearly as big as me.  Amongst my antics I hit someone’s car with the stick, pulled someone’s parking chain off the hook on their drive, tried to climb the street lamps, stopped and waved at all the cars and touched all the traffic cones as we went past the roadwork’s.  Once home I went out in the garden and discovered that I could use mums clothes horse to climb up my slide.  Mum keeps going very pale today.  Think I’ll have to keep an eye on her – she might be sickening for something

2019:  Got into Zofs parents late last night from Stansted. No antics today just lazing around and trying to acclimatise. Looking forward to heading back to our flat tonight  but not so much work tomorrow

#work #stansted #easter #chocolate #ditzy #antics #airports #toddlers #growing up #mums

 

April 1st – Chocolate, Buses and Treats

1999: Accidentally headbutted mum when I woke up this morning – she wasn’t impressed.  She turned her back on me for about 5 minutes – sulking.  Then I put my arm around her and I was forgiven.  Shorts and t-shirt today for the first time this year and my sandals too.  Edon took us to the park and Dan bought me some buttons, which I promptly dropped all over the floor!  When mum picked me up I spied the Easer Eggs Edon gave her and polished one off on the way home.  It’s great having a chocoholic mum – she has empathy!  When we got home we made hot cross buns – a bit messy but great fun.  I went in my swing and fell asleep there whilst drinking my cuppa.  Mum kept trying to get me out but, each time she did, I went into one and just asked for another swing.  Why can’t she just leave me here anyway?  I wasn’t sleeping – I was just resting my eyes.   

2019: Amazing river cruise and meal last night and today was spent on the bus touring the city – mostly because we had already paid for the tickets and are down to our last bits of shrapnel. On getting back to the hotel this evening, we discovered that there is a spa, swimming pool and solarium on the roof of our hotel – all included in the price. Think we’ll spend the night here. Hopefully its not an April Fools and we wont get a big bill tomorrow

#choclate #easter #baking #buns #parks #budapest #holidays #spa #hotels #toddlers #buses #growingup

 

March 29th – Letting Rip

1999:  I waved to all the cars, buses and lorries on the way, to Edons today and not one of them waved back, I didn’t think that was a very good start to the day.  It was quiet today, as it’s half term, so no Jake or Josh, but Lea and Dan were there.  I didn’t want mum to go this morning and this evening I came running out to meet her.  There was an Easter egg in the back of the car, which I spied straight away, and ended up eating it all but still ate my tea (which I feel was a good move on my part) Played in the garden, watched some of Simbas Pride with mum after my bath, and was in bed and asleep by 8.00.  Not a very eventful day, but the chocolate was good!

2019:  I clearly used to love chocolate. Still like my sweets but chocolate is one of my worst “go through me” intakes. But then most foods do and I’m either eating for England or not at all. Got caught short in Tesco the other day and had to run (luckily pre ankle injury!). I followed the toilet signs only to come across a large rail of clothing blocking my path. I had to run all the way round another two aisles and came to the disabled loo first with a big sign “Not all disabilities are visible”. Phew! I went in, pulled everything down and sat on the throne just in time to do a big “Crohn’s let rip”. Relief. Bugger. There was no bloody toilet roll. So ensued 10 minutes of trying to get Zofs attention by text (who is usually glued to her phone) and eventually she responded, found me loo roll and deposited it to me in the disabled loo. No need to text to get her attention today as we are glued together, at Stansted and on our way to Budapest. Lets Party!

#holidays #budapest #stansted #flying #crohns #IBD #IBS #tescos #shopping #eating #sweets #chocolte #eastereggs #toddlers #growingup #childminders