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
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
1999: Slept until seven when the alarm went off. Didn’t sleep at all at Edons today and when mum picked me up it was reported that we had all been very hyper for the past hour and a half. I was very excitable. I played in the garden and distributed my sand everywhere but the sandpit. After tea I decide to paint the kitchen window with my bottle brush and soapy water. I think it looks lovely but mum reckons it might not look quite so lovely once it’s dried. Had a bath and fell asleep cuddled up to mum at 6.30
2019: Mum and Mark are still in Ireland. Kiegan is at theirs looking after the cat – Prince Eric Catona (How embarrassing). I went over for the day and we decided on a BBQ and were not going to let the rain stop us. My Aquarian mind put the double line up with the bbq cover pegged to it and stayed perfectly dry whilst the food sizzled
#toddlers #parents #ManchesterUtd #Family #BBQ #weather #starsigns #childsplay #cleaning #cats #cooking #EricCatona #
1999: Up at seven, although had crawled into bed earlier with mum. I looked closely to check it was her. I gave her a big hug and kiss and settled back down to sleep with a smile. We went down for milk and I told mum I wanted to wee. What a surprise she had when she took my nappy off – it was completely dry! Well I did tell them last night that I didn’t want my nappy on, whatever happened to trust? Mum had a bit of a lie in and when she got up, I proudly showed her the mess in my room and how clever I am – I’d been working just like Pa! Today we went with Nanny to go to the crematorium, where my mummy‘s Nanny is. We stopped at the nursery to buy plants and then got back into the car. A little way up the road something blew off the roof of Nan’s car -oh dear it was mum’s mobile. We had to pull over whilst mum sprinted back up the road to retrieve it (that’s the slowest sprint I’ve ever seen). We drove to the Crem, where mum planted her plant, and Nan put some silk roses in a vase – I did the watering of course. I stayed dry all morning and used the toilet and mum and Nan were very proud. We went to the Ann Boleyn pub for lunch – chits and fizz. It was great as it was right next to Southend airport and I got my first real close up of planes taking off and flying right over us. There were also buses, trains, helicopters, cars and bikes to look at. I was in my element. We had lemon and pepper turkey and pasta for tea, but I dropped mine all over the floor. Luckily Nan had some in reserve!
2019: How Southend Airport has changed and is causing uproar rather than my childhood excitement. Have to say I still love planes (and basically anything with an engine) but think even I might not like to live next to Southend Runway. When we lived in Lincolnshire we were on the flight path to Coningsby and used to love all the planes – Tornado and then Eurofighter which were amazing but the special treats were when the Battle of Britain Memorial Flight and red Arrows would fly over.
#ditzy #humour #memorial #pottytraining #planes #coningsby #lincolnshire #southend #airport #toddlers #growinup #childhood #bygonetimes #adulthood
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
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!
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
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
1999: I awoke in Aunty Eesa’s bed with mum next to me and the rest of the house was up by 6.15 – but they didn’t seem too impressed. Anyway I was saved later when Uncle Tony, who was away fishing, rang to say the clocks had gone forward an hour, so there! We played a bit this morning and aunty Eesa took us home at 10.30 or is it 11.30? We went to bed when we got in as mum is feeling poorly. Something to do with Martel, whoever that is! We snuggled up until 3.00! Mum looked slightly less green when we got up, but I’ve seen her looking better. I wanted to carry on sleeping really, but eventually gave in to mum’s persistence and went out to play in the garden. When we went to have a bath the water was really cold and mum had to boil up kettles of water to make it warm.
2019: Hmm. No issues with Martel on Mums first sleep over but I’m a little green from Jack as I was eventually swigging out of the bottle to try and numb my ankle pain. Swelling has gone down though and I have a bit more movement so will just continue to hobble until it heals. Don’t really want to be travelling to Budapest with plaster on anyhow. Although assisted flying is quite good – I had this flying back from Ireland once with a broken toe. The first of many toe breaks. My big toes are now so numb I’m continually stubbing them as cannot feel them!
#fishing #alcohol #britishsummertime #alchohol #martel #JD #breaks #injuries #sleepovers #budapest
1999: Well spring is here, and mum can no longer say “go back to sleep it’s the middle of the night”. No more fooling me mother. The sun is shining and it’s as bright as day out there. “UP”. We listened to music, watched T.V. and played. We jumped over cushions and then hid under them (my favorite game). I walked all the way to town and back (accompanied by mum). Then I had to sit and wait, and wait, and wait whilst mum had her hair cut. I wasn’t too happy. As we left the hairdressers mum apologised and said something about childcare arrangements next time. Sorry, but I’m the one who was bored and neglected. Aunty Eesa, Dandell and Dessica came over this afternoon and we went to the farm to see and feed the animals. When I was on my pony ride someone stole my animal food and I was not best impressed. I decided to take a short cut to the play area across the grass but half way there, I just stopped dead and didn’t move. Mum came running over to me and discovered I stepped into the bog and was up to my knees in water. Aunty Eesa found this highly amusing and said I looked like a bog monster. Oh ho, ho, very funny. We had ice cream and played on the slide and climbing frame. And then I decided to walk into the swings. Ouch! After tea and baths we all piled into Eesa’s camper van and headed for hers where we stayed the night.
2019: Text mum to see if could come over for tea tonight instead of tomorrow and she agreed. Bought steak for tea from the butchers under us and cooked Mum an early Mothers Day dinner. At work today I walked into a scaffold pole with the ankle and after dinner Zof took me to A&E (mum says she had done her stint of this) but we were back in an hour due to estimated waiting times 7 – 8 hours in all.
#butchers #meat #farms #swings #spring #hospitals #cooking #shopping #mothersday