Confessions of a Crohnie – Part 3

  • I have gone to the doctors in my jammies more than once – not even ashamed.
  • My granny pants are so big they come up to my belly button.
  • Every time I try and be healthy or go to the gym, my body goes into shock. WHY ARE YOU FEEDING ME VEGETABLES – GO TO MCDONALDS AND ORDER A CHEESEBURGER. (FYI – I tried a pea pod the other day and I lived to tell the tale).
  • My painkillers are the dissolvable kind as I can’t swallow tablets.
  • Sometimes so much poo comes out of me I wonder how it is possible?!

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  • I get annoyed when people confuse IBD with IBS – it is NOT the same thing.
  • I get frustrated when people assume I am well because I am young and say you look great… nope, help, my insides are red raw. I have about 89 mouth ulcers (exaggeration) and I don’t know the last time I had a solid bowel movement.
  • I am lucky that my work understand my disease. I have worked in retail before where it was a struggle to get them to realise it’s not IBS (see point 1 of this section) Print outs and tears eventually helped me get the point across.
  • I always feel dirty.
  • I go through about 4 rolls of toilet roll a week.

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  • At the moment I just want to eat quiche and drink Dr Pepper – healthy as ever.
  • My farts smell so bad sometimes, I have actually boked in my mouth (sorry TMI!)
  • Every day for me is a learning day. I love reading about new Crohn’s studies/developments.
  • As you probably are aware, I am very open about my body. I could talk about poo all day, every day.
  • I should be renamed Spotty McSpot face at the moment as I am having a major break out thanks to medication.

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  • Even when it’s a warm night, I have to go to a bed with a hot water bottle strapped to my back.
  • My pain threshold is pretty impressive.
  • I would love to wear white jeans but I have the FEAR of an accident happening and knowing my luck it would happen in public.
  • I have learnt not to judge. I can’t stress enough the importance of not evil eyeing someone as they come out of a disabled loo – Not every disability is visible!
  • Sometimes I just have to laugh at the situations I get myself into and hope everyone else is as understanding about the smells, tears and regular updates.

 

The Kagools at the Great Yorkshire Fringe

Ok, I must admit when I first seen the promo flyer for this show I questioned if it was targeted at kids and oh boy how I was wrong. As soon as I seen one ‘Kagool’ thrusting on stage I had no idea what we were in for… (it is for ages 4+ so you can make it a family day).

The Kagools are a silent comedy duo act that consists of two kagool wearing comedians. Sounds simple yet with their body language and VERY expressional faces they communicate with the audience for 55 minutes without uttering a word.

I laughed from start to finish at this show, with the help of my step dad being pulled from the audience. Yes, there is a bit of audience participation – and they don’t just pick from the front row!

The show was filled with dancing, water (lots), Skittles, songs, a few pairs of trainers, unicorns, rubber ducks, a projector and lots of laughs.

I would highly recommend you find the time to see them. Lucky for most of my readers in the Edinburgh area they are coming to the Fringe. You can find the show details here.

Fingers crossed I can see them again as they were THAT good.

Kagools

Dining with a Crohnie

I love food, I really do, but reading this post you are going to think are you sure? You seem like a barrel of laughs to go out for a meal with… I promise it’s all good if the rules in my head are stuck to!

If not I usually grin and bare it so you would probably never know I am on the edge of break down (ha!)

I try and go out for dinner as much as possible. It’s something I have loved to do since I was little. Anything from a bar lunch to something more formal I am always willing to give it a try – as long as there is bread rolls on the table as back up.

So what are my fears, rules and weirdness when it comes to dining out with me? Well…

  1. I always read the menu before I go anywhere. I don’t do being spontaneous when it comes to eating. I will usually have a first, second and pudding option picked out and ready to fire to the waiter. I don’t do waiting as it gives me time to overthink!
  2. Sharing food gives me the fear. I am a bit like Joey from friends, although it’s not because I am greedy I just don’t want your germs. I will share with Russell, close friends and family but that is pushing it.
  3. I like to distract myself while eating. I have to either be talking, watching TV or in a deep thought about something – I tend to glaze over. If not I end up focusing on what I am eating the end up in pain.
  4. My stomach is always making noises. It is not necessarily because I am hungry. It can sound like a whale calling… It can be embarrassing when it grumbles in the office.

Food

  1. Majority of the time I am full after 2 bites. I have had to train myself again to eat more. It is kind of like mind of matter. I am continually telling myself ‘I CAN do this!’
  2. I will ALWAYS find something wrong with a meal. I use this as an excuse to not have to finish it. Russell is always on hand to eat my leftovers though.
  3. I don’t cope well if my food is touching or if someone else (Russell) mushes their food together.
  4. I would happily live on puddings for the rest of my life.
  5. If going out for a meal I like to know every detail as my anxiety goes through the roof – Who is going, what are they eating, do they share food, do they do starters, where will we be sitting, are we staying for pudding, will they comment on my eating habits, do they know I am this weird (hahaha), is the toilet near by, will they judge me if I don’t eat my vegetables….
  6. I will only eat things made my certain people (although I am working on this one). For example, I will only eat my dads omelettes or my mums sandwiches.

Now please don’t let this list put you off inviting me out. If I don’t eat I am quite happy enjoying your company… maybe even with a glass of gin in my hand!

Chaophraya

A wee cry in the sky

Russell and I flew down to Southampton for a friends wedding in Portsmouth (not Plymouth as we originally thought and planned for – oops!) and all was fine.

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HOWEVER…

The return journey was not so fine.

(After reading the news I am now blaming the pain on drinking two Costa ice drinks – read here!!!)

Anyway, as soon as our flight took off to head back to Glasgow airport, something inside me decided to cause great pain. It was like I was being continually stabbed while  someone was also twisting my intestine. It felt like my insides were swelling up and I would soon resemble Violet from Willy Wonka (although I am not purple) My feet already looked like little Richmond sausages from the heat so I knew I could pull of this bloated look… just not the pain!

Queue the tears…

It was soon clear that I was the baby on board this flight.

The pain was so bad that not even a game of cards could take my mind of it. This resulted in Russell letting me win a few games to make me feel better (awww!).

For the whole flight I spent it wiping tears away and taking deep breaths as I never had any painkillers to hand. I sounded like one of the mums to be on One Born Every Minute – Can you visualise the scene? A lot of huffing and puffing was taking place while I sat with my jeans unbuttoned crying into a deck of cards.wedding 2I managed to compose myself in time for landing but as soon as I stood up to get off the little propeller plane the pain was heightened. I was walking like I had had an accident in my pants (which surprisingly I hadn’t – yes, I am as shocked as you are!)

Two feet safely on concrete I was sure I was close to passing out. Hunched over clenching my left side, two airport staff came to assist. I knew if I spoke it would just be a wail of pain and tears so Russell tried to inform them I had Crohn’s. To begin with I think they thought I had been punched in the stomach. They couldn’t of been any quicker to react and next thing I knew I was being quickly escorted through the airport in a wheelchair out to the bus stop. Cringe or what?

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So where does that leave me? Well I am now fearing for a long haul flight to Florida in November but hopefully Edinburgh Airport are just as nice as Glasgow? I shall keep you posted!

PS. I might now consider adult nappies…

 

 

 

 

Festivaling with a Crohnie

So, after watching Glastonbury over the weekend, I got proper festival envy. I spent Sunday watching George Ezra on TV feeling sorry for myself. T in the Park was my summer holiday for a few years but sadly that is no more!

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I have been lucky to attend my local festival, Party at the Palace and had great fun. They were great with my invisible illness and let me use the ‘posh’ loos instead of the smelly ones. For it being held in my little town, some big names have been at it. The Proclaimers, Nile Rogers (Chic), The Feeling and many more. This year we have The Kaiser Chiefs who I LOVED back in the day. Yay. Fingers crossed they have the same great staff as before, and I can sneak to the posh loos – maybe bump into Gok Wan on the way? Festival 1You can camp at PATP but as I have a flat near by I don’t need to. Although I would say the camp site has always been the best part of T in the Park.

Now when I told people I was camping at T in the Park, many looked at me with confusion and fear. “No way will you manage”, “Have you seen the toilets???”, “You will hate it!”

To be honest – I was fine. Yes the toilets where stinking but that could easily be blocked by stuffing baby wipes up your nose. Hand sanitizer was a god send and I was really one too many ciders drunk (sorry mum!) to care.

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The first year I camped, I upgraded to the VIP toilets and showers. I put fresh make up every day and flowers in my hair. I was looking for that perfect Instagram festival photo but by my second year I just walked around like a minger and had a baby wipe shower in the morning (you can never back to many wipes!) My make up was limited and I never even used dry shampoo. I was a total tink but had the best time! The clothes I packed where a lot less than the first time too – I took a suitcase on my first TITP trip. It was packed with outfit options, pot noodles, ham sandwiches and enough loo roll to tee pee the whole campsite (when in reality I was keeping it for my poor bum). After the trek I learnt very quickly less is more AND you can live on chips, cheese & curry sauce without getting a pain.

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As Crohnie what are my top tips for keeping up with the festival goers?

  1. Pack baby wipes – they are handy for everything! Also, don’t feel guilty about not sharing.
  2. Keep hydrated (boring I know, I would much rather keep drinking vodka) this will help your insides, especially kidneys if on azathioprine.
  3. You will probably look like a drug dealer with all your meds but take them! Store them in a safe place and if you forget a dose (due to cider brain) don’t panic – Just remember to take them at your next normal time.
  4. Know where the first aid tent is… in case of emergency!
  5. Don’t feel bad if you end up missing an artist and have to stay at the campsite. That is where all the real fun is.

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PS Crohnies – Another bonus about using the toilets at festivals are that they are already  bad, that no matter what you added to the pan it never really makes a difference (TMI? sorry!) SO be brave, be bold and go dance the soles of your wellies off…

You can get Party at the Palace tickets here

 

 

Drinking with a Crohnie – Linlithgow Marches

HIP HIP?! HOORAY!

I get asked a lot if I am ok to drink alcohol, and the answer is yes! (woo) I tend to drink spirits – gin being my favourite – but every Crohnie is different. I struggle with cider and beer which is a shame, as there is nothing better than on a hot day (rare occurrence in Scotland) than to crack open a fruit cider and burn my ginger skin.

Anyway, Tuesday was Linlithgow Marches. A historic event where the boundaries of my little town are checked and declared safe with lots of pipe bands, floats and celebrated with a few alcoholic beverages. You can read more here about the ins and outs – A lot of planning goes into running the day smoothly so thanks to everyone involved!

My family celebrate the Marches by doing a pub crawl along the high street, which Linlithgow has plenty of. We start at the West port and head along to the Low port hitting every pub along the way.

It is an early start on the Marches with pubs opening at 7am – we held off until 10am… This year we were sensible though and lined our stomach with morning rolls cooked by Russell (unlike previous years… oops!)Marches 1 .jpgThe first procession along the high street starts at 5am but I was still sound asleep (I did walk it last year) so I was glad to see the 11am one. This years floats included Beauty and the Beast, Baby Boss and Ghostbusters to name a few.

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As the pubs are busier than usual toilet queues are very likely. This is the one time having Crohn’s can come in very handy as I have a ‘Can’t Wait’ card. I do use this to my advantage – naughty, I know! A BIG shout out though to Ellie’s Cellar who let me quickly pop in. I did return the favour by purchasing a mini Edinburgh Gin to top up the hip flask. It is great to see so many people out celebrating together and having a laugh. I always end up bumping into people I haven’t seen in ages. It is a great excuse to catch up!

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Being the kids Russell and I think we are, we headed along to the shows that are set up in the Tesco car park. After a few spins on the waltzers I decided I was hungry so went to get pizza. Which unfortunately ended up all down my white dress. I am hoping Vanish will be able to remove the cheese stains.

We met back up with the family and next thing I knew I was up on stage in the local hall singing along with a band to the Proclaimers. Sorry for anyone who had to hear!!!Marches 5

After a little dancing Russell and I decided to call it a night and get some chips and cheese for the walk home.

Definitely one of my favourite days of the year and you will be glad to know I woke up hangover free unlike someone else I know (Russell).

Long live the Marches! 

 

Eating my way through May

Bridge 49 Cafe Bar & Bistro: Breakfast with a view. Situated on the Union Canal at Linlithgow you can watch barges float past while you tuck into a full breakfast. Great for lunch and dinner too. Recently won a regional award for best restaurant in Edinburgh and the Lothian’s.

Smoke Stack: Perfect place for brunch in central Edinburgh. Waiter sorted our problems quickly (cold waffles) and made a good latte, although they don’t have syrups.

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Miller and Carter: I was pleasantly surprised how good the steak was being that it is a chain but would 100% go back. You do get a funny wedge of lettuce to start with… but a side portion of mac and cheese is a must! Also, follow them on social media – they are very good at communicating!

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Bar Soba: A quirky venue on Hanover St, serving  Pan Asian street food. It was recommended to me by my work colleague and I was so glad I went. Food is spicy so I would have water for the table if you are scared of spice like me (ha!) I got the chicken satay and I am already trying to get a date to go again – it was THAT GOOD. Fab cocktail menu too.bar soba

Sygn Bar: My go to place for food! It is always the top of my suggestions when anyone asks for recommendations. I love the mix and match style of this menu – It would definitely suits a picky eater like me. I would recommend the porkie fries, chicken and chorizo pizza and the haggis bon bons with a frozen candy cosmo on the side.

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Boozy Cow (Stirling): Dining with no cutlery! (you can ask for it if needed) Basically handed a roll of kitchen roll and a tray of food to dive in to. It is a great place and the Edinburgh one is situated across from my work (it supplies my weekly Nutella milkshake fix) My personal favourite is the Philli cheese steak. For sides I  get Onion rings the size of my face served with thousand island dip and skinny fries. You do have the option of sweet potato ones too but I ate so many I can no longer face them. Boozy milkshakes are a must here – Chocolate salty caramel balls is the best one (I have tried them all!)

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Do you have any recommendations for where I should dine this month? TIA!