October 20th – The Lions Lair

1999:  Edons first thing, then off to Nan’s – I was ready and waiting for her when she arrived.  I saw Pa, Nanny, Bomper and Uncle Telly – who painted a tiger on my face with Nan’s make up and printed me a picture from the Lion King from Pa’s computer.  We’d already had tea when mum came home and mum and I went up to the bathroom to “surprise” everyone with the new clean me.  Uncle Telly gave me £5 for some sweeties and Nanny has collected lots of ‘coloured bits’ for my sponsored yoghurt pot (and sponsored me too!)  Once back home I went to bed but told mummy she had “forgotten something” – a “wet wipe in my bed”.  She did laugh and was very impressed with my speech, but didn’t have a clue why I was requesting this!

2019: Not a good day. Completely exhausted when I got in from work. I just didn’t have the energy to cook anything and so asked Zof to do so. This ended up in a dispute and so I got some space and went to mums for a bit where I polished off the rest of the beef hotpot they had made for dinner. I had a chat with mum when she advised that cooking is only a life skill once you have learnt to do it. Just because I have always cooked and seem to have a natural flare, not everyone does. Point made, I headed back home.

#LionKing #childhood #kids #parents #family #adulthood #cooking #crohns #mentalhealth

September 23rd – Ketchup Catastrophe with Barty and Jack

1999:  Wee’d, pooed, ate drank, slept and said “oh bloody hell”.

2019: Blood taken in prep for starting Infliximab infusion on Wednesday.  Went to see mum and chopped up some wood for her fire. Couldn’t do much due to tiredness – crohns and depression but did cook a lush keto lunch for me and mum – steak, lardons, mushrooms and eggs and I actually managed to forgo my ketchup and mayo. One of my favourite bools as a kid was ‘Barty’s Ketchup Catastrophe’ by Sally chambers. Poor Barty was addicted to ketchup but he goes to stay with a friends for tea and there is none. Perhaps I am now cured of my addiction but was Barty?!

#toilettraining #infliximab #crohns #ChildrensBooks #keto #cooking #sauces

 

 

August 15th – Play Time was so Much Fun

1999: Awoke at six to find mum next to me. She managed to contain me until 6.45 when I went in to see Dandell. Soon we were all up making bedlam, mayhem and lots of mess and noise. Mum didn’t take too well to all this and got up with the right grumps at half eight when we all went down for breakfast. We didn’t stay long – mum looked like she’d wet herself after I’d dropped a whole cup of orange over us and then I swiped Dandell for no apparent reason. (I know the reason. They always say “what did you do that for? And just coz a guy can’t speak they think it was for no reason. Well, even when I can speak I’m not gonna tell. So there!) Once home we watched videos and generally dossed with a 2 hour afternoon nap. We were awoken by the ice cream man. We ran out and got there just in time to get screwballs with sweeties. I played in the garden for a while, shouting for Emma through the fence and decided to do a wee on the grass while her and her brother looked through the spy holes. We all thought it was really funny, except for the miserable old uns of course.

2019: Back to the doctors today for a further two week sick note. I’m feeling a little better but if I go back to work tomorrow on the phones (which is my biggest anxiety) and someone starts having a go at me then I might just lose the plot and my job. This is not the best job for me but its easier on my Crohn’s than manual work and I need a steady income. Triggers: Work and money!

#toddlers #childhood #adulthood #work #money #friends #mums #play mental health #anxiety #depression #crohns

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

 

 

June 19th – Insomnia and Snores to move Mountains

1999: Got put back in my own bed 3 times tonight, but I won in the end.  She’s just far too drowsy for a showdown in the middle of the night.  It’s lovely and hot today.  I played in the garden while mum made sandwiches and off we went to Marsh Farm.  We arrived so early that I got to drive round the car park twice sat on mums lap.  We spent 3 hours at the farm and had our photo taken on a cool postcard Machine. Once home, I played in the garden – shouting at Emma through our peep holes in the fence. We went to see Nanny and Pa and  Pa has bought a cricket set for our holiday and a new bedtime story book for me (if I can get it off mum that is).  We played in the garden and I shouted really loudly at a barking dog – “shut up dog”.  Nanny says now she really knows how I get spoken to at home (although I must say mum has never called me ‘dog’). Mum assured her that it is only during times of severe trauma, but I would like to point out that this is her trauma and not mine – I’m absolutely fine

2019: Never was a good sleeper. Still struggle now. Mind whizzing at 100 mile an hour, or stomach cramps from wind and crohns! But once I’m asleep – it can be like waking a rock and apparently my snores are loud enough to shake a mountain. Talking of which, meeting at work today to discuss my fundraising event in support of my mount Snowdon run in July for @crohnsandcolitis.uk.  Aviva are being very supportive and we are going to fund raise for 3 days at beginning of July including a cake sale. Mum offered to make some gluten and lactose free muffins but Mark pointed out I needed to sell these not give them away!

#toddlers #mums #parents #childhood #adulthood #crohns #colitis #IBD #Snowdon #fundraising #muffins #cakes #insomnia #MarshFarm #driving #mentalhealth #fundraising #Aviva #lactosefree #glutenfree #humour

 

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