July 13th – Kids Have a Smashing Time

1999: We didn’t get up until 7.30 but we still managed to get out for eight.  I did well with training today (once I realised Edon was still not going to relent).  Edon managed to keep me awake all day so that mummy could spend time with me tonight but I was a bit tired.  A man came round to fix the smashed TV tonight (oops) and after this I had a bath and by 6.30 was soundo on the settee.

2019:  Jump forward 20 years – pretty much the same really – apart from I didn’t pee everywhere, I had to go to work and the TV didn’t need fixing. Our lounge window, however, is a different matter – due to a youth and a football. Fancy doing something like that? Haha

#toddlers #childhood #adulthood #pottytraining #mums #tvrepairs #windowsandballs

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 17th – Water and Fire

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

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 10th – Entertaining Conversations

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 #

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

 

 

 

March30th – Exploring Budapest

1999:  Decided I wanted a calm morning, so instead of getting into mum’s bed and making her sheets wet, I stood by the bed and told her I was wet.  At Edon’s we had to go shoe shopping for the kids.  Isn’t it bad enough that I have to do this with my mother?!  When mum picked me up, I had vest and trousers on as had been running around playing with the others and was very hot.  Also told mum I had a bad head.  When we were playing, Dan had fallen over backwards and fallen right onto my head. Ouch!  That hurt.  No real damage done though.  Mum managed to get me home with the temptation of seeing Action Man.  After quite a search we found him in my bed. 

2019: We arrived in Budapest last night, after eventually clearing security at Stansted – Zof had scissors in her make up bag in hand luggage and so ensued a full search. Upon emptying the bag during the search, we both realised we had left our swimming costumes at home so bought some at the airport. Had a great day on the Hop on Hop off (ironic with my ankle) bus around the city, exploring, eating and drinking

#pottytraining #actionman #shoes #shopping #costumes #airports #flying #budapest #travel #growingup #holidays