The photos from the conference in Serbia have been added to the Guideline Committee page on the EAES website. So that’s Nice.
https://eaes.eu/about-eaes/committees/guidelines-committee/
I’m embarrassed to say that I missed the last photoshoot at the conference last year, because although on that occasion I arrived in the country a full 24 hours early to be on time for the meeting ~ I unfortunately mistook the meeting time and managed to turn up late, and I think that answers any and all questions about why I don’t have an actual job. 🫣😂
I did go to my GP a while back, to be referred for an assessment for ADHD and ASD, but she downloaded a pile of paperwork that needed to be filled in by me, so I thought the best plan of action was to look through it, cry with overwhelm, and hide it at the back of the kitchen cupboard, where it remains to this very day.
So while it hides there I will just have to carry on living the rest of my life in a state of bewildered chaos, while pretending to be perfectly composed and capable.
I have Dyslexia and Dyscalculia, so I am already fully on the neuro-spicy side of life anyway, and I get by just fine - just jobless, probably unemployable, and fearful of being “found out”…so maybe I don’t need the assessment to confirm my suspicions after all. We’ll see.
Anyway, the new photos have turned out lovely so at least I’m on the header now. :)
Look at all these incredible people…and me. I’m so honoured they let me be a part of this community, I’m always shocked about it myself, so I can fully appreciate if you are too. 😬🤣
Do you remember when I said Serbia has to be my last early AM flight. I was so smug about it. I knew the early starts weren’t for me…and then life humbled me when Chris mentioned that my flight on Sunday this week is at 6am!!
Whyyyyyyyyy??? Whyyyyyyyy? Hahahah
It’s fine, I’m going to my house, by myself, so if I’m a mardy bitch for the day it’ll affect no one but me. :)
******
What have I been doing, and what was I wearing for it?
A mixed bag really.
I have been pretty exhausted lately, a combo of the heat, travel and activity.
On the days I’m exhausted I don’t do much, but I put a face on because it helps me feel a bit better about myself.
Fake it to make baby.
Dress from TK Maxx, Shoes from Dior.
I was invited to the Summer Luncheon for the team at the Foodbank I volunteer with.
And usually I don’t go, I find social situations very stressful. I know, it’s weird for me to say that because I seemingly go out a lot for someone who finds it difficult.
But mostly I go with my same friends each time, and they are my safe space and my happy place.
And even though I work alongside the Foodbank gang I still feel anxious about doing something different with them, than just my normal shift.
I’m the most unsociable sociable person you could ever meet.
Anyway, for reasons unclear I agreed to attend, and although I sat in my car for about 20 minutes fretting before I could go into the restaurant, I did actually manage it!
Oh well done me for going into a nice place, to eat nice food with nice people, my Nobel prize is in the post I’m sure! 🫣
Top from TK Maxx, Trousers from M&S, Shoes from Jimmy Choo, Bag from Chloe.
They are a lovely group, and it was really fun.
One of the team had created a quiz for us. I do love me a quiz!!
One of my favourite questions came up.
What is the largest desert 🐪 in the world?
If you don’t know the answer, it’s worth googling and remembering, just in case you are off to a quiz night. It comes up quite a bit. 🧊
It was great fun!
Will I be going to the Christmas gathering? No, because by then I will have my special festive anxiety on the go, and I don’t want to miss out on that! 🫣😬🤣
I started writing this blog to show that life with a stoma is not a bleak experience, it can be as big and as glorious as you want it to be.
A stoma bag is not a negative thing in my head (I appreciate that others may very well feel differently about theirs, and I totally understand that). But for me it’s not a barrier for living well, it’s what enables me to!
Top from Ralph Lauren, Jeans and Shoes from M&S
Even on the boring days, the chores days, the dull days. I enjoy it all.
Dress from Gap, Shoes from Gina
Top from Kate Spade, Shorts from Tesco, Shoes from Manolo Blahnik.
I started the day in these shorts, they feel so nice on, or felt that should say, as I broke the zip whilst wearing them and had to go change.
Top from Kate Spade, Shorts from Tesco.
I had the online meeting with a new medical society to me.
It was really funny because as I was sitting there listening to the introductions I heard a voice I recognised, and I realised Stavros (my guideline committee leader was on the zoom too).
I spoke to him after and he said he hadn’t realised I would be there, and I said to him “you know me, of all people I have time to help out with these projects”.
I’m very available, and I like to help. I think feeling useful and appreciated for being useful is one of the most pleasant feelings in life.
I encourage everyone to get involved with volunteer work, and Patient Partnering is a fabulous use of time. I’m a big fan!
Friday night Chris came up with a fabulous plan to go and watch polo at our local club.
It was a fantastic night.
I regret few things in this life, but going to a field in summer without any insect repellent is one.
I look like I have leprosy now, I’m covered in bites.
Top from M&S, Vest from Intimissimi, Shorts from Ralph Lauren, Shoes from Hermes.
I love Friday nights out because it elongates that weekend feeling.
Saturday was spent in town getting some errands done. Which was super fun!
Then finished off with a meal at Chutney Mary.
Pre diagnosis, but fully symptomatic I would not have had the guts to do any of this stuff!
I was so scared of shitting myself in public that I hid away. Venturing out to limited locations where I knew the route to the toilets like my life depended on it.
I feel very free now. Like I can go anywhere I choose.
It was 15 years since my surgery the other day and I forgot it was the anniversary because I was too busy enjoying myself!
That’s what success looks like to me. 🤍
The food here is out of this world, it’s my favourite Indian restaurant in the UK.
I get to live a very happy life, seeing people I love, eating amazing food, wearing some fabulous clothes.
Again, to me, that’s what success looks like. And it’s the exact opposite of what I expected when I was told I needed a permanent stoma.
Shirt from Mango, Shorts from Tesco, Shoes from Dior.
Ben and Erin invited us for dinner on Sunday night.
They did a great job. Erin cooked a fabulous meal, a meal of her heritage and ancestry 🇰🇼
It was delicious, and really interesting to Chris and I as we have never been to the Middle East, and don’t really know much about the food.
It’s always helpful when you try new foods that the people with you have the knowledge you lack.
Like when we go for Turkish food or Nigerian food, we need a lot of guidance because they are not cuisines we are familiar with, thankfully we have friends that are.
Our food faves are
Indian
Greek
Italian
Thai
…English 🫣😬🤣
And Ben made an Egyptian honey cake which was also delicious, and only the second cake he’s ever made.
So a roaring success all around.
Do I get excited to try new foods…shamefully, no not really, because I panic I won’t like it and it’d be a waste of a meal time.
But I do feel compelled to try because I might be missing out on something good.
Top from TK Maxx, Skirt from Athena Procopiou, Shoes from Fendi, Bag from Goyard.
So on the subject of trying new foods, M&S came up with a new sandwich, apparently they are a delicacy in the Far East, but I’m not too sure.
It had Kim and I hooked on the marketing, it was everywhere. and we were struggling to get hold of one to try.
But then Kim managed it, and I very excitedly went to hers to try it.
Our excitement was palpable…
I can confirm that that is a fucking awful sandwich!!
An abomination.
In my head I thought the bread would be a firm cake type mixture or scone-ish ~ it’s not!
It says sweetened bread, so we thought, okay - brioche ~ it’s not!!
It’s like a cheap white sliced loaf, with cream cheese and strawberries in it.
Everything about it is wrong.
And I am a fan of a banana sandwich. So it’s not like I’m against fruit sarnies!
The smell of the cream cheese made me gag a bit, and the taste definitely did.
Plus you only get half a round of sandwiches in the pack. Which seems a strange complaint in the circumstances, but I want value for money, even if I hate the offering.
I will defend M&S to the tax man though.
Dear sir or madam at the Tax office, that is most definitely a sandwich, and not a cake. It’s nowhere near a cake, it’s nothing like a cake. It’s 100% sandwich!! And not a good one.
A Jam sandwich is sweet, but it doesn’t make it a cake.
If you are a fan of cream cheese, slightly sweeter sliced white dappy bread and lumps in your sandwiches, then it might be a wonderful treat for you…if you are normal, then avoid at all costs. 🤣
All was not lost because we headed out to Mowgli in Chelmsford for a curry for lunch.
And that more than made up for our disappointment of our food testing.
I overheard heard a family the other day discussing what to have for dinner.
And the son asked if they could have Indian, and the dad replied “it’s a bit hot for a curry son!”
😳🫣🤣
It did tickle my fancy, India being known for their artic climate and all. 😂
I came home and sat the rest of the day in our air con, and if you don’t have air conditioning in the UK right now, you are my heroes, because I am melting into a puddle of a woman.
Me on a busy day 🤣
Dress from H&M, Shoes from Hermes
I’m trying to stay indoors as much as possible, I am not built for England heat, it hits different to holiday heat.
But I did see a few things lately that I thought might help;
Stoma bags are plastic and be very sweaty making where it touches your skin. So I wondered if these would help.
I don’t use talc, I saw some articles a few years back about it being possibly carcinogenic, no idea if it is, but have avoided it ever since.
Worth a try under my bag, where it touches my body.
And I saw these advertised on Facebook.
The man came up with them for his nan who was suffering from dementia, and would forget to drink and get very dehydrated.
I am going to order some to see if they help me when flying, as I get incredibly dehydrated then.
But other stoma users, those with ilesostomy, might find them useful on an every day basis.
While I’m on here recommending things (for which I get no payment, it’s just if I see something that looks interesting I pass it on. I’m no gatekeeper).
I’ve just finished reading this fabulous book by this equally fabulous young man;
It’s a very interesting read, demystifying, de stigmatising and empowering.
It's incredibly bold to speak about mental illness, it's so misunderstood, and seen so negatively.
Speaking about mental health issues helps make it less scary and less isolating
This is a very important book. It’s very helpful to understand more about mental illness, for all of us!
I saw some of the stuff Mike posted on his Instagram lives, while he was very poorly, as my son’s worked with him. He’s such a lovely man, so it’s so wonderful to see him well and more than just surviving, he’s now thriving! And helping others along the way.
I wish him well and would recommend his book. the more we know, the less scary things are.
https://amzn.eu/d/hAo3erS
Keep well, stay cool xx