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 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
1999: I waved to all the cars, buses and lorries on the way, to Edons today and not one of them waved back, I didn’t think that was a very good start to the day. It was quiet today, as it’s half term, so no Jake or Josh, but Lea and Dan were there. I didn’t want mum to go this morning and this evening I came running out to meet her. There was an Easter egg in the back of the car, which I spied straight away, and ended up eating it all but still ate my tea (which I feel was a good move on my part) Played in the garden, watched some of Simbas Pride with mum after my bath, and was in bed and asleep by 8.00. Not a very eventful day, but the chocolate was good!
2019: I clearly used to love chocolate. Still like my sweets but chocolate is one of my worst “go through me” intakes. But then most foods do and I’m either eating for England or not at all. Got caught short in Tesco the other day and had to run (luckily pre ankle injury!). I followed the toilet signs only to come across a large rail of clothing blocking my path. I had to run all the way round another two aisles and came to the disabled loo first with a big sign “Not all disabilities are visible”. Phew! I went in, pulled everything down and sat on the throne just in time to do a big “Crohn’s let rip”. Relief. Bugger. There was no bloody toilet roll. So ensued 10 minutes of trying to get Zofs attention by text (who is usually glued to her phone) and eventually she responded, found me loo roll and deposited it to me in the disabled loo. No need to text to get her attention today as we are glued together, at Stansted and on our way to Budapest. Lets Party!
#holidays #budapest #stansted #flying #crohns #IBD #IBS #tescos #shopping #eating #sweets #chocolte #eastereggs #toddlers #growingup #childminders
1999: Early start today. Awake at 6.30 when mum bought my milk in! Is she feeling all right? It’s a bit on the early side and she did it all on her own. I held my own inhaler and spacer unit this morning, something I’ve started doing over the past week. Why does it take big people so long to realise that we will happily do things, if only they’d let us get on with it? I tried to play with my racing cars this morning but they wouldn’t work. Mum had a look at it and then blamed me accusing me of leaving the battery on which I felt was mighty unfair and so I had a look and I managed to get it going. When mum picked me up tonight we went home via the shops and I chose Jelly Tots and went running up to mum. Oh, was that not the reason we were here then? Apparently not – it was to collect a paper for Nan! She gave in. I’m just far too cute, but it’s definitely for my own good! Whilst she was paying I went for a wander. Mum found me in the cake section drooling over the iced buns; she seemed rather relieved that she reached me at that point; personally I found it quite disappointing. No milk tonight because mum forgot to buy any – even though we’d just been to the shop!. We’ve only just been to the shops! It’s typical, I really don’t know what she does with her day, or her memory come to that. Tired, milkless and asleep by 8.00
2019: Well mum hasn’t changed over the years and neither have I really. Still love my milk, although I know it probably makes my Crohn’s worse, along with gluten, but my motto is “You’re here for a good time, not a long time”. Death really doesn’t bother me but dying of boredom and restriction does. That’s not the depressed or morbid side of me talking, I’ve looked death in the eye with sepsis. I wasn’t scared – I was too delirious to know or feel anything – but I did make up my mind afterwards to live. And food is my passion so I’m gonna enjoy it. I’ve long grown out of asthma – 7 years ago but it stopped me enlisting for the army at 16 as had to be 3 years clear, and then Crohn’s came along …
#crohns #autoimmune #depression #positiveliving #food #milk #asthma #growing up
1999: When I got up I was full of beans and I got mum to join in my antics too (even though we were running late). I found the headphones for mum’s walkman and sang into the connector piece (as usual) and today I did it on my very own stage – mum’s flat packed wardrobes which are on the floor waiting to be put up. I wish she’d hurry up and do it, my room’s still full of all her clothes (and I thought I had a lot!) Told mummy that I’d had a good day at Edons but I refused to put my shoes and socks on tonight so mum had to carry me to the new, shiny red car. I love it! Mum’s bought a smelly for it, but I didn’t care for that much, it smelt far better than it tasted. When we got home I found ice-lollies in the freezer which mum made me eat in the kitchen (I can’t think why). The phone went tonight before, during and after tea – Dev, Eesa, Nan, Karen and Tracey! Mum and I cuddled on the settee but she put me to bed at 7.45 as she thought I was tired and miserable. I thought I’d been trying to communicate! I was asleep within 10 minutes – perhaps she was right, but I won’t tell she knows best.
2019: Communication’s not my best thing currently. Low mood and arguments. Got an email to advise I did not get short listed for mental health support worker role I applied for – but at least they bothered to email me. My grumpiness when tired and hungry has continued into adult life but not working definitely makes everything 10 times worse. Self esteem is taking nose dive as is my Crohn’s
#depression #self-esteem #crohns #autoimmune #work #humour #growing up
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
1999: Thud. Thud. Thud. Awoke to footsteps on the floorboards at 6.15 a.m. Some people are so inconsiderate, don’t they realise I had a late night? On further investigation they turned out to be mine, as I found myself on automatic pilot to mummy’s room and bed, whereupon we snuggled back down until 8.00. Just as we were about to get up we heard a downpour. It was the first time mum has ever been glad to see rain as it meant she got an extra 5 minutes in bed whilst I watched the rain from her bedroom window. Mum reckons I’m a bit whiney today and says that it’s not the best of days to be like this as she’s quit smoking. What that’s got to do with anything I don’t know. Anyway if anyone’s being moody and miserable today it’s her, not me. Women! We went over the town and I wanted a bacon roll from the burger van. Mummy only ordered one and told the man that I would only have a bite and that she would have to eat the rest. He said that one day I would call her bluff and eat it all. What a marvellous idea (don’t know why I didn’t think of it before). So 10 minutes later we were back at the burger van ordering mummy’s bacon roll. That will teach her to be so presumptuous. We went to see Aunty ‘Eesa’ and I played with ‘Dandell’ and ‘Dessica’ for a while. We left at 2.30, which I think was way too early, now all I have to look forwards to is a boring afternoon of mummy. So I fell asleep in the car and continued to sleep through the transfer to the settee and finally decided to wake up to mum’s prompts just in time for tea. Well – I had to give in, it was Yorkshire Pud’s. I finished my Yorkshires and hadn’t even started the rest, when I spotted the Jelly Babies. I pushed the rest of my dinner away opting for the sweets. Unfortunately mum had other ideas. My dinner is now in the bin and the Jelly Babies remain, untouched, in the pot. She’s not completely mean though; I did get a mince pie. Another day of well balanced diet – sugar and fat – great if you’re nearly two, not so great if the Health Visitor finds out.
Mum popped into Lidl to get a few bits but ended up filling the trolley so much she had to ring me to go and meet her . I had to jump in the car and go help with the packing and loading and I then came home and cooked dinner using some of my new Christmas cookware. I still love my sweets and mince pies but love to whip up different culinary concoctions with herbs and spices. Have discovered I have to hold back a bit on the latter though as it effects my Chron’s – although I’ve been a lot better since surgery last year. I love to cook and eat when I can and it’s better than having to keep fanning the smoke detector when mum cooks (plus I don’t have to wash up!)