July 26th – Good Good Good, Good Donations

1999:  I slept right through until half four this morning, when I woke up in my own bed and was alive and kicking.  Mum still wanted to sleep and after several disruptions to her shut eye she shut her bedroom door in my face. Charming!  By the time she got up – 45 minutes later – we were back on talking terms.  I jumped in mum’s water and drank all her tea (except 3 mouthfuls which she’d managed to swig before I got my mitts on it – gonna have to speed up my tactics). Went to Edons and when mum picked me up she had a tricycle for me which one of her staff had kindly donated to our cause!  Mummy let me ride it out front for a while and then we went round to the back where I found her a lovely feather (the first of her collection) and it wasn’t long before the hose pipe came out.  I surprised mum by counting to twelve in the bath tonight, following which we both fell asleep on my bed at 7.15

2019:  A long drive from Lowestoft in Suffolk in Bala to Wales ready for my Snowdon run,  Staying in the home of a musician through Airb&b. The alarm is set for 4.40am. The day has come round so quickly and I am soo literally nervous and I have no idea why. I have absolutely smashed my fundraising target which currently stands at at £685 towards Crohns and Colitis UK, and now to absolutely smash this mountain.  Hopefully gonna be setting off at 6 am tomorrow and provided all goes well i’ll be returning at some point before 10 am. This is more nerve racking than when I was waiting to go for surgery. Time to show the world that us people with chronic, invisible illness are the most strongest physically and mentally set people! I’m not just doing this for me, but my friends, family and everyone in the invisible illness community. Thank yo to everyone who donated and thank you to my family who have come along with me  to be waiting at the end with a long, stiff drink!

#toddlers #childhood #mums #childminders #adulthood #crohns #crohnswarrior #notalldisabilitiesarevisible #ibs #crohnsdisease #mountain #snowdon#wales #snowdonia #trek #family #crohnsandcolitis #fundraising #lowestoft #suffolk

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July 24th – Crohn’s is a Pain in the Bum

1999:  We went dimming this morning and they had a tombola there.  I chose 6 tickets and won two prizes – a football for me and a key ring for mummy.  Mum said something about Lady Luck and perhaps I could send her to her, but I reckon I’ve enough women around me as it is.  We called into Aunty Eesas and I played with Dandell and Dessica whilst mummy attempted to paint Aunty Eesa’s toe nails. Personally I think I made a better job of my own the other day!  We played in the garden this afternoon and mummy made me my very own drum kit – out of buckets and wooden spoons.  We had Shepherds pie for tea and cleared our plates. I told mum she was a “good boy” and gave her a clap.  She said she was a “good girl” and that I was a “good boy”.  I wasn’t having any of that – I wanted to be a “good girl” like mummy – much to her amusement.  I had 2 pears and an apple but wasn’t allowed any more fruit as was staying at Aunty Karens tonight and mum thought it a bit unfair.  I don’t know why; it’s only nature.  Mummy went out tonight and Karen put me to bed at half nine.  She’d kept me up longer to allow Agal to get to sleep first and her plan had worked. She put me in the bed next to Agal’s cot  and then the phone rang.  She went off to answer it and when she came back upstairs she found me lying in bed playing a mouth organ and Agal stood up in her cot dancing!  She gave up at left us to it.

2019: No drums or fun today although lots of thunder and lighting watching in the early hours. Colonoscopy at 9am and the outcome was not what I was looking for. I had 28cm of my ileum removed a year ago and, since my last colonoscopy in September, the ulceration has now increased to 10cm and also the addition of haemorrhoids. I know I’m a pain in the bum but really?! Lets hope they get me on these infusions as soon as!!! On the plus side – mums treating me to Chinese for tea (but she’s also feeding me probiotics – I hate tablets)

#chinese #food #crohns #IBD #Colitis #toddlers #childhood #adulthood #percussion #beauty #friends #infusions #autoimmune #immunosupressants #probiotics #guthealth #humour #AbbyHardingMemorialFoundation (Agal) #stormwatching

 

 

July 23rd – Food Glorious Food

1999: Up for the day at five a.m.  Mum snoozed on the settee, between requests for drinks, wees and videos! Had a sleep today at Edons, which wasn’t really surprising considering my early start and all my hard playing.  Once home again tonight I played in my car and painted it again, along with myself.  Ate all my tea, “ish ingers”, Alphabites, spaghetti and crisps.  I had to have a bath afterwards due to spaghetti sauce and paint!  Mum has continued with elocution lessons today; trying to get me to say “I am” instead of “ham” and I have now progressed to “high ham”. 

2019: What Id give for fish fingers and alphabites right now. Even the High Ham sounds good. Bowel prep today so all I have is soup and laxatives. Went to mums tonight and was very Hangry so a trip ensued to Tescos for Jellies and soda. Cant wait until tomorrow when I can stuff my face!

#toddlers #childminders #mums #food #cooking #English #Language #childhood #adulthood #crohns #IBD #Colitis #bowelprep #Tescos #Jelly

 

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 18th – Cow Pats and Face Packs

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!

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 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