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

 

 

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

January 27th – I want Everything but I could do without the Crohn’s

1999:  Pa’s birthday today and Bompers too.  Mummy was already dressed before I got up this morning as I had a lie in until 7.45.  Why don’t I do this at weekends when mum could lie in?  Well there just wouldn’t be any fun in that, now would there? I do have some heart though; I found mums silk roses on her windowsill, picked them up and presented them to her.  She said they were lovely and that they smelt beautiful too.  They’re pretend mother, not real.  Honestly!  Oh well best not disappoint her, I’ll play along with her, let me smell ‘Mm.  Lovely’.  What a Wally!  A little later I called mummy into my bedroom and she came in to find me looking very pleased with myself.  I had stuck the remaining stickers for my potty training chart all over the wardrobe and they were stuck hard and fast.  She told me I was very clever but perhaps next time they should go on the chart.  Tip of the month – if you want to avoid getting in trouble with your mum always look proud and pleased with what you have done and they won’t have the heart to tell you off.  After Edons tonight, mummy and I went to the card shop to get birthday cards for Pa and Bomper, but I found it far more fun to wreck the joint whilst she was distracted rather than to look for cards. We arrived at Nanny and Pa’s and I gave Pa his present and then took it straight back off him and unwrapped it.  Mm, very nice, a new T-shirt, it looks a bit on the big side for me though mum.  What do you mean it’s for Pa; everyone knows presents are for kids.  Aren’t they?  Oh well, the cake then? Pa’s great, he let me sit on his lap and blow out the candles ‘again’ and ‘again’.

2019:  Great Grandad Bomper died when I was 6 at the age of 86.  He is still with me wherever I go and often flickers lights on and off around me! Zof and I were hanging in London this morning and called in to see Uncle Terry, Aunty Dee  and cousin Beau at Epping Ice rink and had a little skate eventually getting home at 7 pm.

Whilst we were away, with me permission, mum had changed my room round (due to a condensation and mould problem which is attacking the wallpaper and needing to get the bed off of said wall) and sorted all my draws etc out. Sprung – I have a full packet of immunosuppressants and a prescription in my draw! Thing is I am very reluctant to take them due to nearly dying of sepsis Christmas before last due to a fungi entering my blood through my sinuses as I was so immune supressed

January 23rd – In Remembrance of Abigail

1999: – I felt a bit kinder today and slept until 8, which seemed to please mum, but we didn’t lounge around as we apparently had a busy schedule ahead.  We started in Asda getting Bombers shopping which mummy found very confusing due to all the fresh food on the list.  Honestly, how the other half live, mummy feeds me from packets, tins and the freezer!  In protest I kept swinging my feet as I sat in the trolley and putting dirty foot prints all over her beige jeans (well I ask you, what a colour to wear).  She was not impressed, but my fun didn’t last long as she robbed me of my trainers.  Once we’d loaded up the car we went to the dentist but there was a long delay.  Mummy didn’t seem to mind though; she just made another appointment for another day.  Seems strange for her to be so cheerful about an inconvenience, perhaps she really likes the dentist and doesn’t mind when she lets her down.  We called in to see Nanny and Pa and then to Bompers to deliver his shopping. Next we went to see  Karen at the Rugby pitch where her husband Mark was playing.  I found it very frustrating though as I was strapped in my buggy, having to watch mud covered men running after a funny shaped ball.  I thought it would have been far more fun if mum had let me out of the buggy and let me run around after the ball, Karen agreed but mum didn’t give in and I remained restrained.  I got my own back later though when we went on to the club for a drink and saw two men playing pool – I decided to make the game more fun by moving the balls, they didn’t seem to mind, but mum spoilt the fun as always.  We went back to Karen’s and I played with her daughter Abigail,  affectionately known to me as ‘Agal’ and we stayed the night, with Agal’s cot next to my bed.

2019: This morning mum had to get up early with me to take my bloods for monitoring due to immunosuppressants – I keep telling her I’m far too busy to drop by the hospital. Although I managed to get home early today as need to pick Caine up from the station as he has just got back onshore and missed my birthday celebrations. Mum’s still muttering something about priorities.

Sadly A’gal died when she was 7 following a road traffic incident. She was living in Ireland with Karen and Mark and her younger sister Kate.  Her parents have set up The Abby Harding Memorial Foundation with every bit of money raised going directly to families of children with acquired brain injury. We are still in contact and have been to one of the foundation balls which are held every couple of years

https://www.facebook.com/The-Abby-Harding-Memorial-Foundation-587892691315979/