August 5th – High Days and Low days

1999: After breakfast we trooped to the launderette to wash clothes and bedding – and I thought we were supposed to be on our hols!  Pa took me to the park where I decided to jump in the puddles to splash another little boy and I ended up getting soaked.  Think I’ll have to go back to the drawing board on that one.  Mum came and found me with a pair of washed and dried pants but she stopped to stroke a dog and before she could get them on me the dog had run off with them.   We went for a train ride again today to Dungeoness but there was nothing there, so we got back on the train and went to New Romney station for coffee, cakes and a wee in the 20p slot train ride.  We caught the train back to Romney sands and disembarked nervously as we only had tickets to Dungeoness and back.  I’m sure I’ll get hauled over the coals if I get caught doing the same when I’m older.  Honestly, I could have ended up with a record for being totally innocent!  I went out to play with my friends and came in and led Pa out to “look”.  I showed him the poo on the floor and said “gog”, but it would seem Pa isn’t as easily fooled as I thought.  We went dancing tonight with Dylan the dinosaur, me complete with nappy as mums finally got fed up with wet clothes.  Personally I wish I’d never insisted on potty training to start with but I really thought mum would give up before the novelty wore off.  Lesson: never underestimate your mum!

2019:  Mood still low and anxiety at its peak. Forced myself to go to the gym as I know this can help but only lasted 20 minutes due to feeling so dizzy and faint. The anxiety forced me back home again but, as mum said, at least I gave it a go. I just feel safer indoors and am spending my time on x-box which at least is a distraction.

#toddlers #holidays #mums #grandparents #toilettraining #dungeoness #NewRomney #anxiety #depression #mentalhealth #xbox #gym #exercise #dogs #dinosaurs #holidays

 

August 4th – Walking Disasters

1999:   Swimming this morning and I got very brave with Pa’s help (I’ve always been brave really it’s just that Pa’s around to tell mum to stop stressing) jumping and diving in with my head going under water. After lunch mum took off my t-shirt and was putting it in soak and whilst her back was turned I made my escape down the caravan steps.  Everything was going fine – until I fell – Nan screamed, mum ran and water went everywhere.  Pa, who had been shaving at the time, stopped to clean up the water and afterwards realised he’d left his shower running with the plug in the small bath area and there was an even bigger flood to contend with!  I had a cut on my head and a bump on my elbow and the lady from the next caravan came running over with an ice pack.  Later, mummy wished she’d borrowed it and taken it out with us.  We went on the train to Dymchurch and I wanted to go donkey riding on the beach but the queue was a bit long so we went in the amusements for a while.  When we came out, the queue had gone, and mum said if I did a quick wee I could go and have a ride.  I weed like a good boy in my travel pot, and just as I was finishing the donkey trailer, complete with donkeys drove past us – on its way home.  I took it in good form and we found a soft play area instead.  I lasted in the play area 10 minutes, before I jumped down 5 steps and found a hard landing at the bottom hurting my ankle which, despite wet tea towels, continued to swell.  When we got back to the station we had to wait 45 minutes for a train.  Mum cuddled me and sang to me walking up and down the platform, until I fell asleep – anything to drown out the noise of her singing voice.  When I woke up I was in the caravan and cried because my foot hurt and I couldn’t walk on it.  We went to the hospital where I continued to hop and cry and get cuddles on demand.  There was a very pretty nurse there and she asked me to walk over to her, so I showed her my very best walk – with two feet.  I think mum might need to see the doctor – she’s looking very red for some reason.  Anyway, the nice nurse strapped up my ankle and off I ran.  We didn’t get back for tea until nine and at ten mum gave me my milk and some Calpol, which I promptly threw back up everywhere – along with hula hoops and chocolate that I’d had after my tea.  Mum cleaned me then handed me to Pa, mum got in the shower and Nan cleaned up the mess.  I went to bed, out of harms way.  Relief, everyone can now relax.  Not quite, Nan knocked the liquid air freshener over, the towel rail fell off the door and Pa had to fix it and another bed had to be sorted for Nanny because hers is covered in vomit.  Good night.

2019:  Zof came home today after a few days at her mums. We both needed a bit of breathing space but I cannot escape from my anxiety an depression right now. Zof suggested going for a picnic in the park but we compromised with a make shift BBQ on the steps of our flat. The instant, disposable BBQ’s aren’t as great as the real thing and we only have the steps to sit on but we made it our own (and at least there were no disasters today!)

#toddlers #parents #mums #grandparents #RomneyMarsh #swimming #holidays #caravans #playareas #trains #accidents #injuries #depression #anxiety #mentalhealth #cooking #bbq

July 31st – From Holidays to Pain Filled Days (and links to eye conditions with Crohn’s)

1999:  woke up at four to find Nanny in mummy’s bed and no sign of mum.  She had apparently had to go in to work in the middle of the night!  I got into bed with Nan and went back to sleep for a couple of hours and opened the door to mum when she came home with a big smile.  We’re going on holiday today and so Nanny went home while mummy cut my hair, we had a bath, finished the packing and then we waited for Nanny and Pa.  They soon arrived and we loaded our things into the car and were on our way to Romney Marsh  ‘caraban’ site.  There’s a miniature steam railway that runs through the site so we sat and watched the trains at the station and then went to the beach. Nanny walked up to the fish and chip shop that someone had told her was ten minutes up the road.  She returned an hour later – it was 10 minutes by car and it was shut anyway!  She’d found a shop though and had brought salad and crisps back with her.  I wanted mum to carry me part way back to the caravan. Mum obliged – until she realised my trunks were full of poo! After tea mummy went to the camp shop to get some wine and playing cards but it was shut as was reception when we realised they’d put us in the wrong caravan – all the paperwork was in someone else’s name.   All  the olds were dopey and lulled out by 8.30 pm.  As for me – I’m raring to go and full of mischief. By 8.45 we were all dressed and I was in my buggy – off for a walk to lull me to sleep.  We ended up in the pub on our way back (it was the novelty of finding somewhere open) and then continued on our way with Pa teaching me ‘twinkle, twinkle little star’ as we looked up at the sky.    

2019: No excitement here today and definitely no mischief. My tooth is better but I have the headache from hell. Have had to take another day off sick. Mum thinks it might be rebound headache from all the pain relief I was swallowing yesterday. No eye pain or visual problems so I don’t have to worry about Uveitis this time. Crohn’s is a learning journey not just effecting the bowel. For more information on how Crohns can affect your eyes go to https://www.healthline.com/health/crohns-disease/crohns-disease-eyes

#toddlers #childhood #adulthood #holidays #parents #grandparents #mums #Kent #RomneyMarsh #Caravans #headaches #crohns #uveitis #pottytraining

July 28th – Vocalising Celebrations

1999   Impressed mum as I came into her room this morning and said “can I have” but needed help with the “a drink please” bit.  Mum thought I was very clever and said it was far nicer than the “dink” I usually holler in her ear.  That’s as may be, but it’s much harder work if you ask me.  I mean, why use all those words when you can get the same result just using one?  Adults!  I’ll never understand them.  Found the camera on the lounge floor this morning and   took several photos of the telly, the carpet, the curtain, my foot etc.  Should look good when the films developed (nice surprise for mum anyhow). Went to Edons and then Nanny’s today.  The sun was shining and I played in the garden all day. Nanny gave me a new shirt from Uncle Teddy – a Southend United one!   I was very tired tonight which resulted in tantrums; largely because mummy pulled the plug out of the bath just because I slapped her!  I was back home and in bed by seven and asleep two minutes later.

2019: Long drive back from Wales to Beccles today, made worse by an hour and a half jam on the A14. Legs are pretty wobbly from yesterdays run but I’m happy I did the run and am also celebrating one year with Zof today! She has stuck by me (even holding my hand in hospital after surgery and looking after me when I was discharged at the beginning of July when we were just friends). She has inspired me, encouraged me, helped me,  filled me with confidence and let me be me. Looking forwards to many more years together.

#toddlers #childhood #adulthood #vocabulary #childtalk #photography #sunshine #footbal #southendutd #tantrums  #Beccles #Wales #Trafficjams #girlfriend #friends #crohns #hemicolectomy #mentalhealth

July 27th – Like the Nike Goddess – I just Did It and was Victorious

1999:  Mum’s happy.  Something to do with pay day and me staying in bed until half six.  We sat on the settee for a while and then it was on with the routine.  Returned from Edons today with a bag full of wet clothes.  Luckily it happened on a ‘good day’.  I wish it could be pay day every day!  After mummy had tucked me in and gone downstairs tonight, I decided I wanted my Teddy bear down from his home in the wall hammock.  I thought it best not call mum, so I figured a way to get him by climbing on my chest of drawers.  Mum came running when she heard the ‘thump’ of me hitting the floor.  Fortunately both Teddy and I were fine and snuggled down to sleep.

2019: I started my Snowden run at 6.18 am and I absolutely smashed by 4 hour target with a time of 2:57!! Honestly, I am so happy, I literally broke down in tears, couldn’t believe what I have just achieved; surgery last year, still not in remission and a colonoscopy just 3 days ago. Thank you so much to all the donators and for the support I have had. @crohnsandcolitisuk I have done it not only for you but for all of our community. We are the strongest people and we will ALWAYS push on. Mount Snowden I have smashed you and I was not beaten.

Note to others: If you go early in the morning there is nowhere to get water at the top at this time of day and my camel back ran dry so make sure you pace the water or get an extra large camel back!

http://www.justgiving.com/Mountaintimetrial

#crohns #colitis #justgiving #IBD #crohnsandcolitisuk #Snowden #Wales #Payday #accidents #teddybears #elation #justdoit #Nike #GreekMythology

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 25th -It’s Great to Eat Again

1999:  Agal and I woke the whole household this morning with our apparently “loud” conversations.  How rude!  It’s just as well I don’t accuse mummy of this when she’s ‘natter, natter, natter’ with her friends!  We stayed for toast and milk and then we drove home.  Once there it was a case of antibiotics, wash, inhalers, teeth, pack bag and off to daddy’s.  All my cousins were there and we had great fun in the garden and the pool.  Grandma brought me home – sound asleep as usual, whereupon mummy must have transferred me to bed.

2019: Well there’s nothing like being at mums after a day of starvation and a colonoscopy. She went shopping and bought me heaps of treats yesterday, we had chinese for tea and I chilled with movies and ex box. Home today to tidy and get packing for our trip to Wales tomorrow and my mountain run for crohn’s and colitis. Have so far raised £345 on just giving and £230 at work.  Thank you every one who is supporting me. If you want to keep up to date with my run up and down Snowdon on Saturday then follow me on Instagram @ chronically_livingcd

#toddlers #childhood #AbbyHardingMemorialFoundation (Agal) #parents #grandparents #family #adulthood #crohns #colitis #fundraising #instagram #Snowden #Wales #xbox #snacks #food #movies #chinese