June 19th – Insomnia and Snores to move Mountains

1999: Got put back in my own bed 3 times tonight, but I won in the end.  She’s just far too drowsy for a showdown in the middle of the night.  It’s lovely and hot today.  I played in the garden while mum made sandwiches and off we went to Marsh Farm.  We arrived so early that I got to drive round the car park twice sat on mums lap.  We spent 3 hours at the farm and had our photo taken on a cool postcard Machine. Once home, I played in the garden – shouting at Emma through our peep holes in the fence. We went to see Nanny and Pa and  Pa has bought a cricket set for our holiday and a new bedtime story book for me (if I can get it off mum that is).  We played in the garden and I shouted really loudly at a barking dog – “shut up dog”.  Nanny says now she really knows how I get spoken to at home (although I must say mum has never called me ‘dog’). Mum assured her that it is only during times of severe trauma, but I would like to point out that this is her trauma and not mine – I’m absolutely fine

2019: Never was a good sleeper. Still struggle now. Mind whizzing at 100 mile an hour, or stomach cramps from wind and crohns! But once I’m asleep – it can be like waking a rock and apparently my snores are loud enough to shake a mountain. Talking of which, meeting at work today to discuss my fundraising event in support of my mount Snowdon run in July for @crohnsandcolitis.uk.  Aviva are being very supportive and we are going to fund raise for 3 days at beginning of July including a cake sale. Mum offered to make some gluten and lactose free muffins but Mark pointed out I needed to sell these not give them away!

#toddlers #mums #parents #childhood #adulthood #crohns #colitis #IBD #Snowdon #fundraising #muffins #cakes #insomnia #MarshFarm #driving #mentalhealth #fundraising #Aviva #lactosefree #glutenfree #humour

 

June 12th – The Big MAP Shave

1999: I woke mum at three shouting “mummy, mummy, mummy”.  She came to, to find me falling out of her bed (she didn’t even know I’d got in).  She managed to catch hold of my legs and pull me back just in time.  Mum made cooked breakfast this morning, but I only ate the bacon.  It’s rainy but warm this morning.  I didn’t want to go swimming – I wanted to go to the park.  Mummy took me to Whacky warehouse which was good fun.  I put 20p in a machine to get some Jooster sweets but I opened the door too early and they fell all over the floor so we had to try again.  40p for 11 Joosters and mummy ended up eating the lot because I didn’t even like them!  Mum bought me a new pair of trainers and a big boy’s booster seat (which she now feels was a mistake because I discovered a new game – undoing the seat belt whilst in transit!) and an Action Man bag to take my many changes of clothes to Edons.   I had a bacon roll from the burger van (well two bites) and a can of lemonade which I was apparently meant to share with mum! Oh well, she got double bacon roll – even if she didn’t actually want it. 

2019: Mum text me today as just realised, the date I’m running up and down Snowden for @crohnsandcolitisuk, is the same day she had her head shaved to raise money for the MAP Vaccine. This is a potential cure for Crohns and is in its second phase of human trials. Corina and Lukes Big Map Shave raised £1112.03.  MAP (Mycobacterium avium subspecies paratuberculosis) is proven to cause Johne’s Disease, an inflammatory bowel disease affecting livestock and is very similar to Crohn’s disease. It is thought that thid is passed to humans in pasteurised milk and the only thing that kills it is sterilisation, but I just done like it!  MAP has been found in 92% of Crohns sufferers with a test developed by Prof. Hermon-Taylor , Kings College London. His team have developed a vaccine to try and eradicate this.  A potential cure for over 4 million sufferers worldwide, including  1.2 million in the USA and 250,000 in the UK. For more information on Crohns and this fascinating research and the vaccine go to http://www.crohnsmapvaccine.com/

#toddlers #mums #parents #burgervans #playareas #crohns #mapvaccine #crohnscure #IBD #Colitis #childhood #adulthood #kingscollege #chronicillness #cattle #milk #Johnesdisease

May 29th _ Potty Training and Bowel Prep

1999: Mum eventually got up after I’d done a poo in my pot.  The things us kids have to do to get our parents out of bed.   We had to go to the gallery and view my photos at Chelmsford  and when we were parked I wanted to do a wee so I had to go in the gutter of the car park.  That was fine until mums sunglasses fell off her head straight into the line of fire!  We saw the photos and it was so difficult to choose one as they were all lovely (not that I’m bias but I do take a good photo), so mum ended up paying an extra thirty quid to buy all the samples as well as one larger one.  She took me to the toilet 3 times when we were out.  But ‘I don’t want to go!’  Well I didn’t.  Not until we got on the electronic foot measurer in Clarks that is.  Oops!  I’m now a size 71/2G but they don’t have any sandals in my size, so I’ll just have to wait.  (What’s wrong with my wellies anyway?  I love em and they look great with my shorts!)  Aunty Eesa looked after me tonight as mum was going to work with Uncle Teddy.  We waved them off with a few tears, but Aunty Eesa told mum I’d be fine once she’d gone.  How does she know my tricks?

2019:  The day I resent the most is here – bowel prep day. Planned to take the gunk and try to sleep most of today to stave off hunger. Then I realised I didn’t have the medicine  but I did have a ticket for the post office as they had not been able o fit something in the post box a few weeks ago. Off I trotted – they’d thrown it out as had apparently gone past their 18 day. Rand the hospital who advised me to drive over and collect more medication. Off I set again only to be told I needed o start it at 7am and they will now have to re-schedule my colonoscopy.  Bums!

#toddlers #mums #photos #bowelprep #crohns #IBD #parents #childhood #adulthood #toilettraining

May 28th – Fund Raising For @crohnsandcolitisuk

1999:  As soon as the alarm went off I ran into mum’s room, turned off the alarm pulled back the covers and said ‘up’ and ‘dink’.  I jumped into mum’s big bubbly bath, got dressed and we set off for Edons.  During lunch Edon went to answer the phone and when she turned round to look at me I had my head back, eyes shut and my mouth wide open – soundo.  Tonight we mowed the grass – me walking next to mum with my plastic mower.  I helped for a little while and then let her get on with it.  Well, in-between the ‘mummy, stop please’.  She had to keep turning of the mower for me to tell her some tale or give her cuddle.  It was good fun!  We cut the front grass too, which was great because I got to ride my bike up and down our drive.  Mum gave me tandoori chicken Masala for tea – which I promptly spat on the lawn.  It’s a bit spicy that mum!  The garlic and coriander naan bread more than made up for it and then mum peeled me an apple and made me a cup of tea.  Mums realised how often she must say ‘what’ because I keep saying ‘mummy’ then saying ‘what’ before she gets the chance to say it!    

2019:  My running top has arrived.  Buzzing to do my mountain Time trail up the second tallest mountain in the UK (Snowden). Hoping to do this in under 4 hours, at the end of July, raising money for @chrohnsandcolitisuk. Please donate whatever you can, lets fight this and be a strong community.   http://www.justgiving.com/Mountaintimetrial

#crohns #timetrial #MountSnowden #sponsor #fundraising #gardening #indian toddlers #mums #parents #childhood #adulthood #IBD

 

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!