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 9th – Handy Man Tantrums

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

April 7th – Lost Balls and Parties

1999:  Up at 6 this morning, with the alarm.  Mum wasn’t in a very good mood, especially when I started whining in the bath.  Just to complete the start to her day I cried when she left me at Edon’s.  Nan picked me up later on in the morning and Pa and Bomps were home too. Uncle Teddy came round and we watched him on video doing a comedy routine.  I wasn’t to be upstaged though and started mimicking his act.  Later we played football ,  until Teddy lost the ball over the fence!  Some things never change according to Nan!

2019:  Urggh! Don’t know what time I got up today. In fact, I don’t think we fully did. Great house warming party last night but I’m beginning to wonder why I actually came home and did the housework yesterday and why I didn’t listen to mum about the alcohol

#party #football #comedy #humour #housework #toddlers #adults #growingup #alcohol

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

 

March 28th – Summer Time Sleepovers (with Alcohol)

1999: I awoke in Aunty Eesa’s bed with mum next to me and the rest of the house was up by 6.15 – but they didn’t seem too impressed.  Anyway I was saved later when Uncle Tony, who was away fishing, rang to say the clocks had gone forward an hour, so there!  We played a bit this morning and aunty Eesa took us home at 10.30 or is it 11.30?  We went to bed when we got in as mum is feeling poorly.  Something to do with Martel, whoever that is! We snuggled up until 3.00!  Mum looked slightly less green when we got up, but I’ve seen her looking better.  I wanted to carry on sleeping really, but eventually gave in to mum’s persistence and went out to play in the garden.  When we went to have a bath the water was really cold and mum had to boil up kettles of water to make it warm. 

2019: Hmm. No issues with Martel on Mums first sleep over but I’m a little green from Jack as I was eventually swigging out of the bottle to try and numb my ankle pain. Swelling has gone down though and I have a bit more movement so will just continue to hobble until it heals. Don’t really want to be travelling to Budapest with plaster on anyhow. Although assisted flying is quite good – I had this flying back from Ireland once with a broken toe. The first of many toe breaks. My big toes are now so numb I’m continually stubbing them as cannot feel them!

#fishing #alcohol #britishsummertime #alchohol #martel #JD #breaks #injuries #sleepovers #budapest