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

April 18th – Cow Pats and Face Packs

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!

April 16th

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

April 5th – Mischievous Days

1999: Up at 7.00, no prizes for guessing where mum was.  Whilst she was asleep I pooed my nappy and decided to take it off, because that’s what she usually does.  Mum awoke to find marks all over my bed, my carpet and her bed.  Oops!  I had to have a bath and get clean and mum had loads of washing to do. We went to Asda and bought two packed lunches and set off for Danbury lakes.  We walked around and then put a rug on the grass to eat, but we both ended up with wet bums, as the grass was so wet that it soaked through the rug.  We fed the ducks but they weren’t interested so the fish ate the bread instead.  We played ball, I threw it backward over my head, and it rolled down the slope and now the ducks are playing with it!  We went for another walk and I climbed some trees.  Mum got a bit cross though because I kept throwing stones, and she got even crosser when one hit a young boy on the head. Oh dear.  Mum was very apologetic and luckily his mummy was very understanding and forgiving.  Not so with my mum though – we had to go home. 

2019: Bit of a crappy day (literally). Back and shoulder hurting from work. Popped round to mums and ran straight in to the loo. Crohn’s has really flared – suggestions from mum to drink plenty of alcohol, avoid fried and spiced food and alcohol. Good luck with that one – we’ve got a house warming party tomorrow night. Picked up my car from mums after taping the wing mirror back on (I knocked it off after three days of having it – not happy – cant afford to get I fixed so just keep strapping it up)

#sleep #potty training #mess #mischief #toddlers #growing up #crohns #IBD #party #cars #alcohol #food

 

 

 

March 31st – From River Mud to Thermal Spa’s. South Woodham to Budapest

1999:  Mum didn’t seem too enthusiastic this morning – she muttered something about not having to be to work until 9.00 today.  Great – more time to play then. After half an hour of kisses (eleven to be precise), pulling off the covers and shouting “up”, jumping on the bed and clambering all over her, she eventually decided to get up!  Went to Edon’s for a little while and then Nan picked me up.  I was very pleased to see her, and when we got home Bomper was there too.  We went for a walk over the river to see all the boats – and the mud!  Then we went to Asda and had lunch there (actually in the restaurant this time!) Pa and I had great fun playing in the garden – we built ramps for my cars and a ramp, which I walked along pretending to be a tight ropewalker. Have been a bit boulchy today (so they say) and ended it by smacking mum in the face.  The next I knew I was whisked home and put to bed, with milk, but no story.  I was tired anyway.  See if I care.

2019: Happy Mothers day from Budapest. Have facetimed mum a couple of times from this amazing city and told her to bin off anything else she has booked and come here! Have spent the day at the thermal baths and spas (after running back for my trunks) and had an amazing day. Mums really into all the organic and natural health stuff so lets see if this has settled my crohns.

#eating #parents #grandparents #cars #playing #budapest #cities #thermalbaths #aunatural #chrohns #IBD #autoimmune #southwoodham

 

 

 

March 29th

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

March 11th Diversifying Chronic Illness

1999:  On the way to Edons we had to stop at the post office to collect a package for mum – her bouquet of flowers for Mothers day – I’m just so thoughtful, and it’s amazing what a young chap can arrange these days. Tonight mum asked if I wanted anything to eat, I said no but she made us noodles anyway.  Why does she bother to ask?  I had three mouthfuls just to keep her happy.  Whilst mum was busy eating, I went into the kitchen and decided to play with the fridge.  It seemed like a good idea to begin with, but then I poked myself under the eye with the shelf rim. I wouldn’t let mum put anything cold on it, even after she’d put a cold cloth on herself (why she should think that would help my eye I don’t know).  We went upstairs, before my milk, to change my bum and put my pyjamas on, but I wasn’t too keen, and let mum know with a swift head butt to the chest.  This seemed to change her mind again and I ended up in bed!  I did get my milk, a teddy, a cuddle and a ‘moonbeams’ story – well sort of, I’ve started diversifying and I tell mum stories too.  My moonbeams is a wind up toy that shines pictures on the ceiling, one of these being a plane. Mum has made up a story to go with it but sometimes I just shoot the plane out of the sky.  Mum says I’m such a caring, placid child but I don’t quite know where she gets that from. 

2019:  Arrived at Aviva for 9am and smashed the ball out of the park. I’ve got the job but don’t start until 21st April so that might delay things with the flat a bit as only one wage coming in for the next two months. I’ll keep trying with the agencies for now. Home tonight and heavily into Afflicted on Netflix. Told mum I think her Fibromyalgia is actually Lymes disease – spookily this was she has also been thinking

#moonbeams #stories #toddlers #growingup #mothersday #flowers #aviva #interview #job