Oozing skin, vomiting and hundreds of tiny dragonflies for VisitEngland challenge


I’m really sorry at how rubbish I’ve been recently. Everything seems to be getting on top of me. Work has been hectic, holiday planning has taken hold of every waking moment outside the office, and I have been feeling generally, well, crap.IMG_0677

I haven’t posted any photos of my skin over the past few weeks because it would have made you all violently sick. Three weeks ago my skin was so painful I couldn’t walk – my legs were covered in puss-filled boils. At around the same time my skin blew up so did the skin around my stoma, it became bright red again, like it had been burnt. I also got itchy rashes around my eyes, and my eye condition came back.

All in all I have spent the last few weeks feeling like a scale covered snake, well, a hairy scale covered snake – if that’s at all possible. I’ve been unable to shave anything, unable to exercise and unable to look after myself. I’ve felt sick, unattractive and damn right sorry for myself – and mega stressed with my job and my holiday planning.

I went to the doctors in hope of a cure – what I got was infuriating. The doctor, who is apparently a skin specialist, was gleeful at my pain. He could not have been more pleased that I was in agony. He smiled and laughed and seemed joyful that I had such an ‘unusual’ aliment. He seemed to want it to stay put, so that he could study it and poke at it – it was so insensitive, and is something that has happened far too often in my weird and wonderful years of living with the joys of IBD.

Anyway, I eventually resorted (well was forced by my boyfriend) to go to the out of hours doctors. I have no idea why anyone bothers with their real GP after that. The woman was amazing, and really listened to me, prescribed me antibiotics, and was incredibly sympathetic. I wish I could have her all the time, and, in hindsight I should have found out her name and swapped surgeries!

The antibiotics worked but left me feeling rotten. I threw up constantly, and was even on them during Andy’s birthday party. I felt awful. The weekend after I started them me and Andy headed to Milton Keynes so he could do his Spy Day experience I bought him for his birthday last year. We went down the day before, so we headed even further afield to have a go at one of my Visit England challenges – a list of challenges which feels like a massive effort but has so far had many surprising rewards.

Wicken Fen nature reserve was stunning. It was wild and raw, with never ending stretches of long grass as far as the eye could see. I was far too excited to see a dragonfly, and started peering around, shushing Andy as I tried to spot one of the tiny insects. When I finally spotted one I was overwhelmed. I was like a little child. We must have stood for half an hour watching two MASSIVE dragonflies flit about – I guess I wouldn’t have bothered if I’d have know I would have seen dozens by the end of the day.

IMG_0702it was an amazing day. We saw some beautiful insects, and even a deer, it wasn’t the most sunny day so we didn’t see as many dragonflies as we could have , but that didn’t matter it was still a breathtaking experience, and one I would never have done if I didn’t have this bucket list.

The only problem was that we walked miles and I suddenly got very sick. The antibiotics started to churn stomach acid around and I couldn’t go anywhere. I felt dreadful. Luckily I made it back to the car, but when we got to tea I was violently sick – not pleasant for anyone.

Luckily my skin has started to clear up. Which is fantastic as we are heading to America in a week’s time, and I’m so stressed I can hardly breathe. I couldn’t be more excited for the trip, but there is still so much to sort out both for the holiday and at work. I’m also (this is one for the girls) trying to figure out what to do about my bikini line now I have my stoma – should I brave it and get a wax or try the cream?

And I won’t start about the swimsuit nightmare I’ve been having!IMG_0679

Anyway I will blog again tomorrow about my preparations for the big trip! Hope you are all well.

Do you want to join in with the Visit England Challenges and find out more about Wicken Fen visit http://www.visitengland.org

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Big stoma bucket list – one year gone with a flush


A year ago today I was sitting at my computer writing my first ever blog post for this crazy bucket list. A mere few weeks had passed since my first operation, I was still reeling from the shock of having most of my colon ripped from my body and I was a tiny weenie little thing, weighing in at just 6 st 2 lbs. It was boiling hot outside, I was exhausted hunched over my laptop but determined to tell the world about my condition and new life with a stoma. I was sure that no one would read it and I would be talking solely to myself, but I was not going to hide away, I was going to share my story whether the public wanted to know about it or not.

So on May 29 2013 I started Adventures of the Bag Lady, drawing up a list of 101 crazy challenges as part of a bucket list (of sorts) to fully embrace my life with a stoma. As I wrote the challenges down, attempting to get my head around the WordPress templates and world of HTML code, I had no idea what I was letting myself in for: that my life was about to be turned completely upside down; that my world would never be the same; that I would visit more places in a year than in the past five years; and that I would decide to have my stoma made permanent less than a year later.

I had no idea but this silly little list of ‘things to do before I’m 30’ was about to change my life forever. Those first few words on my computer screen would allow me to step out of the stall and out into the world as a loud and proud ostomate, help other IBD patients and catapult my stoma to national fame!

Before my operation I had lived in constant fear of life with a stoma. I was sure it would wreck my love life, confidence and condemn me to a life wearing tracksuits and baggy t-shirts. I was sure the shame of people finding out about my ostomy bag would kill me. I was terrified of what people would think; of once again being labelled a freak and of frightening people at the local swimming baths with the bulge under my costume. I didn’t think I would be able to cope; I thought having an ostomy would be the end of my life as I knew it; that I would become insular and want to hide away. In the end the exact opposite happened…but there again you already know that.

One year on, me and Winnie have been on quite a journey. We’ve won two awards: national and regional. Worked for a national newspaper, including as a lobby and Mirror reporter, specialising in IBD for a breaking news story on a Towie star’s diagnosis with Crohn’s. I’ve ‘outed’ my stoma naked on twitter for millions to see. Travelled up and down the country visiting 100 nude men, the Beatles’ birthplaces, marvelled at Banksy masterpieces, eaten vegan cake while exploring Lincoln cathedral and climbed hundreds of steps to the top of York Minster. I’ve stuffed my face with spaghetti and dairy free ice-cream during an epic Italian trip, which saw me and Winnie ride a gondola and gorge on plate after plate of carbs while traipsing around Rome, Florence and Venice. Watched fireworks on Shakespeare’s birthday in Stratford. Raced through the streets of Chester dressed as a tiny Santa, with a giant Lego man in tow. Come face to face with a naked stranger at a very awkward life drawing class, and read literally hundreds of books during every failed attempt of my reading challenges.

 

My challenges so far:

6: Get nominated for an award – actually 3 and won 2

17: Write a blog with worldwide followers

18: Work for a national newspaper

29: Take a ride in a Gondola in Venice – romantic

37: Take a life drawing class – nude strangers, enough said

53: Run the santa dash – with a giant Lego Man in tow

69: Sell something on Ebay – cost me a fortune!

89: Join a book club – which folded 😦

90: drink a whole cup of tea – I now don’t mind fruit tea

93: Wear a onsie in front of others – a monkey at the Crohn’s walk

96: Ride the London Eye – I love my boyfriend

Of course not much of this would have been possible without the support of my parents, friends and mostly my boyfriend Andy, who has been dedicated driver, and shared many of these remarkable experiences with me, despite all the drama and anguish it has caused him!

It’s not all been plain sailing. Much like the rest of my life with IBD (well even without), the last 365 days have been an emotional roller coaster. There have been very public leaks, ruined dresses, toilet dashes, explosions and destroyed hotel bedding. There have also been pains, vomiting, illness and, of course who can forget, another operation. And how could I not mention scars which reopen, hospitalizations, sceptic collections, eye infections, flu, infected bites, and a lot of run-ins with undigested sprouts, mushrooms and sweetcorn.

The difference has been, while I used to just put up with my illness and side effects and cry silently humiliated by accidents, blood and poop in my bedroom, now I share all the gory details and every humiliation with the world. And in return you guys have given me the greatest present I could ever ask for, a hand of friendship and acceptance. I have been called up by new ostomates panicking over unusual symptoms and been reduced to tears by some of the awful and sometimes hilarious stories of your lives with IBD and/or stomas. I have been moved by the bravery of normal people with extraordinary courage and determination, and their willingness to accept me into such a brave community.

Currently in progress:

1: Learn to speak French fluently – I’m currently a beginner (basic!)

5: Learn to play guitar – well I have the guitar!

8: get 1,000 Twitter followers – @thestomabaglady has 730!

19: Have a novel/short story published – well the writing has started…

30: Have a night out in Birmingham/Liverpool/Manchester/ Edinburgh

33: Complete 30 of Visit England 101 things to do before you die – very much in progress (and expensive)

68: Raise £1,000 for Crohn’s and Colitis UK – getting there

70: Read a book a week for six months – failed a few times – now 3 months in

But it’s not over yet. A year may have passed but I still have until I’m 30, which is (let’s see) 3.5 years away (eek). I have no idea how I am going to get round to all of these exciting and time-consuming (not to mention expensive) challenges by then, but I am determined not to fail, or it will be very public on YouTube, Facebook and WordPress!

So for now, to all of you out there, I just want to say, nothing should hold you back from your dreams. If you want to jump out of a plane don’t let your IBD/stoma hold you back – but please get medical advice! If you want to become an Olympic swimmer, climb Everest, run a marathon, become the world’s best violin player, don’t think you can’t because of your condition. Anything is possible. I mean if I can get 37,000 strangers (well mostly) to view my ramblings who knows what you could do???

I mean I even met Olympic LEGEND Sir Steve Redgrave!!!! What a year!

 

 

Off work on the road to recovery – lack of motivation and boredom but books galore


Every day I wake up determined to do something other than sit around. I start every morning absolutely positive that I’m going to make the most of my time away from the confides of the newsroom desk, set on learning to speak French fluently, making a lovely meal for my hardworking boyfriend, polishing up on media law developments, creating a website for my alter ego and professional self, or even writing a letter thanking my surgeon for not letting me die during my last hospital stay. Shockingly enough shortly after breakfast all my motivation seems to disappear out of the window and I end up finishing the day no closer to becoming a better rounded person than I was when I had a bowel.

Reading and drinking soya frap in grounds of Chester Cathedral

Reading and drinking soya frap in grounds of Chester Cathedral

Every day of my life, whether I’m at work or not, I have to make a list. Some might say it’s an obsession, I think of it more as a loveable quirk. Most nights I come home with a rapidly growing news list and list of blog topics, video and campaign ideas as long as my arm, and the only way I can fall asleep is by writing a list on my iPad/notebook/dreambook (don’t ask)/or iPhone of everything I need to achieve the next day before my head hits the pillow. If I don’t do this my brain won’t stop chattering all night with a thousand voices screaming at me what needs to be done, how urgently and who I need to ring and probably won’t pick up the phone until way after deadline, until I want to put my pen through my skull and pull out my brain (yuck!!).

The shocking thing is despite having endless days alone in the flat with nothing but painkillers and managing my sore bottom and ostomy bag to fill my empty hours I’m still feeling the need to write myself lists. But despite starting the day with a list of five-ten things to do, from hanging out the washing, to designing my website or doing an hour’s worth of French, by the end of the day I’ve often only crossed one thing off the list. In fact I’ve still got last week’s list up on the notice board with five things (out of 12) still to be done – I’ve transformed into a couch potato and I am both disgusted and shocked!

I’m disappointed in myself. I’m bored, tired and going out of my mind, but for some reason unbeknown to me I just can’t focus on anything at the moment. Every time I try to apply myself to anything I just give up, which is not like me at all. I hate not having a project or goal, but even more than that I hate not having a schedule, something which the working day helps me to maintain. The problem is that when you’re not at work every task is something you can put off until later. The day stretches out endlessly before you, meaning you believe you have hours and hours to do every little thing, but before you know it it’s 5pm and Andy is coming in through the door and I’ve literally done nothing. I actually have to force myself out of the house for a little walk everyday, dragging myself out of the door for my daily exercise (come rain or shine) to get a coffee, read next to the canal or buy more nail varnish, just so I don’t sit staring at crime dramas on the telly and watching reruns of Newsnight on loop all day long.

I guess the best thing about being off work is that I’ve fallen back in love with reading again. As a child I used to literally devour books (yes literally!), it’s a family thing! I could read a novel in a matter of hours and even won prizes from my local library for reading and reviewing hundreds of books – and got to meet Hazel Townsend (claim to fame). At the start of this blog I began my ‘read a book a week for six months’ challenge. I was doing really well, racing through books while trying to work every hour under the sun, study for exams and get cracking with some of my other challenges, until month number five when I missed a week and sacked it off. Why did I give up when I was so close? Because I didn’t want to be a cheat, that’s why. The point of these challenges is that they are meant to be challenging. Managing to read a book a week while working is hard, especially when some are political memoirs or solid classics. There is no point in me doing these challenges if I cheat. The point of this blog is to be honest, and as my mum always said “you’re just cheating yourself”.

So I’ve restarted challenge number 70 with gusto. I’m five weeks in and I’m loving it a bit too much. I’ve probably read the equivalent of three books a week recently, and I don’t feel like slowing down any time soon. Obviously I’m going to run this in conjunction with challenge 98 – the autobiographies, which I’m steadily making my way through atm.

Here are some of the books I’ve read over the past five weeks (I honestly can’t remember the others – there were at least three more on my Kindle which I’ve not put here), as you will see I’ve had a lot of time on my hands:

Seventy-Seven by Andy Murray – I love tennis and love Murray (groan I hear a lot of you say). But as a Murray fan I urge you not to read this book. If you thought he was dull before you read it you will be proved right. This book was mind numbingly boring. Murray describes each point of each match, hardly touches on his personal life, and says everything (no matter how big an achievement) is well “ok”. Argh!

The Little Coffee  Shop of Kabul by Deborah Rodriguez – fascinating tale of five extraordinary women in a hostile climate. I couldn’t put this book down, and it helped distract me in the days following my operation. 

Allegiance by Veronica Roth – last in the Divergent series – I was getting a bit tired of these by the time I got to the last one. But they are decent teen books and I would recommend if you want some holiday reading, but get it on your Kindle, the hardback is heavy and hard to hold with joint problems.

The Gingerbread House by Carin Gerhadsen – I love crime and thriller novels, which is funny as I hate thriller films. This was decent and I would read another by her, but not a patch on my favourite crime authors.

Shit my Dad Says by Justin Halpern – I loved this. A lovely twitter follower sent this to me and I laughter so much at the quirky sayings and no-nonsense talk that I almost split my stitches.

High Society by Ben Elton – one of my Dad’s books, but I will be reading more by Elton, gripping and funny look at society.

Gone by Michael Grant – the first in a series. I was hooked to start with, but it soon became a bit like a lame version of divergent and the Hunger Games mixed together – a bit samey for me.

Saturday by Ian McEwan – he never disappoints. Gripping from the start and a must read for all McEwan fans.

Breakfast with Tiffany by Edwin John Wintle – funnier than I expected insight into an uncle living with a rebellious teenage niece in New York

Have I got Views for You by Boris Johnson – being a hack myself I loved this. Even though I’m not a lover of the Tories you’ve got to love a bit of Boris!

So not to fill this blog up with book reviews I’ve decided that once a week I will do a video blog on my Youtube channel reviewing my book/books of the week, then every month I will do a blog on how I got on trying to get through books alongside all my other commitments. You can visit my Youtube channel here.

 

Oh, and if you have any book suggestions please comment below, tweet me @thestomabaglady or Facebook me. I need to spend my days emerged in literature.

 

Hiking in wales and plenty of pub grub – pictures of challenge number 26


Hi everyone, I know its been a while but I’m back in the land of Wifi connection, twitter and Facebook and, most importantly, blogging.

So last week we went and tackled challenge number 29 – well more enjoyed than slogged through it. It was defiantly one of the most enjoyable and relaxing of the challenges and one that I will post about tomorrow and probably bore you all to tears with tales of me wading into puddles which ended up, rather surprisingly, being almost as deep as I am tall, oh and battling undigested almonds while hiking up cliff faces and nursing a hangover.

Anyway for now I thought I would give you a taste of what we got up to on this stunning trip of hiking, romance and more mud than a pigsty, with a selection of the photos taken during the trip to Penrice Castle Cottages:

 

Here’s to a healthy and happy 2014 – my New Year’s resolutions


Today on the first day of 2014 I’m suffering. But I can’t really complain as it’s mostly self-inflicted and the result of having far too much fun (if totally harmless) waving goodbye to one of the most chaotic and unpredictable year’s of my whole life. It’s safe to say that so far this year has been miserable, mostly due to the howling winds and non stop rain pounding against our flat’s windows, and the banging headache and dry throat from my hangover which is coming in peaks and troughs throughout the whole day and clinging to me like a small child.

Exhausted but happy before midnight

Exhausted but happy before midnight

Today is meant to be about turning a new leaf, getting fitter, healthier and leaving behind bad habits we’ve been unable to cast aside for the past year. I’m full of good intentions about improving myself this year, about becoming a more well-rounded, better educated, more generous, more adventurous person. I’m determined to stop eating sweets (I’m addicted), to keep in touch better with friends and to get back into running. So far that’s not happened, and I’ve spent the day gorging on anything I can get my hands on, in fact I’ve made it my mission to clear the house of sweets in time for tomorrow. After all everyone knows New Year’s Day doesn’t count towards New Year’s resolutions….I think that’s an unspoken law.

2014 is going to be my year. I know I must have more surgery to get rid of my bowel forever, and I know I will have to be admitted to hospital and live off dry tuna sandwiches and be nil by mouth (blah blah blah) all over again. But this time it’s going to be different, I can feel it. This time I’m ready and know what to expect. By the end of this year I’m determined to have Winnie (ostomy) as a permanent fixture in my life; I’m determined to be rid of my horrible fistula; and determined never to see blood in the toilet bowl ever again. I know it’s a lot of expectation but I feel after around 14 years I will really have made a massive leap forward by the end of this year – I know it because it has to happen, otherwise I don’t know if I can carry on.

Amazing friends

Amazing friends

Last night was an evening filled with love, laughter and good friends. I celebrated the end of one of the most emotional years ever with my best friend, her boyfriend, my adoring boyfriend Andy and a lot of other friends. I spent the evening surrounded by some of the most amazing people I know, playing games, chatting and generally catching up. At midnight we popped champagne on the balcony and hugged each other. Apart from too much alcohol the evening was perfect, and as per usual being only upstairs we managed to stumble home and to bed without even having to face the freezing cold – which has to be a bonus.

Anyway, enough rambling, here are my resolutions for 2014, let’s see how many I can stick to:

1) I will have my surgery – even if I have to fight tooth and nail I will have the rest of my colon removed. I refuse to be abandoned by my GI team and surgeon (which has happened) and be ignored despite the fact I am still very ill. I will have the surgery to feel fully better by the end of the year, and recover fully and be able to live my life fully without any interruptions from a horrible fistula or Ulcerative Colitis.

2) I will give up sweets and fizzy pop for the whole of January:
This is my equivalent to dry January. Believe me giving up Haribo and diet Coke is far harder than wine. I’ve done it before for months on end so it is possible, but I have to prove to myself I can do this without having to because I’m recovering from surgery or in hospital. I think I will be the grumpiest cow alive for the whole of this month, but my teeth and health will be jumping for joy after it – if I succeed.

3) go to the gym three times a week and swimming once a week:
This is it people. If my surgery goes ahead in March as I have requested I have three months to prepare, so that means getting über fit and healthy to give my body the best fighting chance. Last time I was fit but I was horrendously ill. This time I’m ill but in a more manageable way (if that makes sense), so I can really help myself. I’m determined to be able to swim 50 lengths in our gym pool (full-sized pool) non stop (no stopping whatsoever) by the time I have my surgery. I used to be an amazing swimmer, like a little fish, zipping through the water doing 120 in a much smaller pool in 40 minutes, now I’m still fast but nowhere near as determined or dedicated – that’s going to change.

4) get cracking with my challenges:
I’ve let my challenges slide a bit. I totally failed on my 6 month reading (read a book a week) challenge. I managed five months of doing it properly, but then started missing the deadline. I’m going to start this again. Starting this week I will read a book a week and let you know what I’m reading and what I think. I read dozens of amazing works of fiction and autobiographies last time, this time I can’t wait to get cracking again.
Tomorrow I’m going to restart my French which had been ‘in progress’ for the past five months…meaning I can say ‘the boy eats an egg’ etc. By the end of 2014 I will be able to complete a GCSE workbook, with the AIM of taking the exam in 2015… Tall ask I know, but that’s why these are challenges.
I will learn how to play my new guitar. So far I know two cords, E and E minor, by the end of this year I will be able to play a whole song.
Of course there are many more challenges and I hope to do many this year, including some of those incorporated into a massive trip to America, some stunning trips around the UK, and hopefully doing the Liverpool to Chester bike ride.

5) be committed to being a Ostomy and IBD advocate:
This year I want to spread the word about Crohns / Colitis and being an ostomate on an even larger scale. I want to resume my video blogs, write more articles, tell more people and set up a support network. I want to help others and raise awareness. And I want to create a website for this blog, where people can share hints, tips and ask questions.

6) be more organised and stay in touch with friends and family:
I have one incredibly organised friend, Laura. Without her I often think I wouldn’t leave the house. But I really don’t put in enough effort with my mates. Some I haven’t seen in months despite them living just down the road, and I’m fed up of making excuses. It’s time to become more organised and start making an effort. I need to start visiting some of my best mates from Uni who I promised to keep in touch with, organising nights out for my mates, and even planning a girls short break. These people have stuck by me through thick and thin and it’s time I made the effort, I’m well enough to really give it my all now.

7) spend more time, me and Andy, doing amazing adventures of a weekend:
We are getting better at making the most of the weekends. But sometimes they seem to be over in a flash without us even having done anything. This year at least one day every weekend will be special. Either by doing one of my challenges, visiting somewhere new, going somewhere special, visiting friends or going on a long walk in the country. I never want to go to work again and say ‘yeh we just watched tv and went to the supermarket’ again.

It’s time to get cracking with my life – Inspired by footballer Darren Fletcher and other amazing IBD sufferers


I’m no fan of football, in fact I despise it, but I felt a surge of pride watching Darren Fletcher return to the pitch in his first match for a long time over the weekend. You see he may be a loaded footballer but me and Darren have something in common – we both suffer from Ulcerative Colitis.

I don’t think anyone who suffers from IBD could fail to be inspired by what Darren did this weekend. Even I, the one who hates football, cheered on as he took to the pitch for the first time. I’m the sort if person who usually bickers and tries to read a newspaper while my partner watches Man United but this time I actually watched and felt proud. It gave me shivers.

Ok yes all he did was play football, but what he did was show others having colitis shouldn’t stop you living your dreams. He showed that anything is possible. He showed that you can get diagnosed with what used to be regarded as a taboo, embarrassing illness, and still go on to play for one of the most famous clubs in the world. He showed all those teenaged boys and grown-up men who are going through the horrific pain of Crohn’s and Colitis that you can still become the person you want to be. I mean if he can get on a pitch and play in front of millions and millions of viewers we can try to live our lives .

That first touch of the ball inspired hope in so many people – the commentators definitely didn’t realise that and I’m not sure that he did either.

Yes Darren Fletcher probably had it a little simpler than the rest of us. I don’t mean his illness is any less than ours (before you start trolling me) but he must have had a great medical team around him, after all he is a world famous footballer, who would expect anything less. Oh and he earns a lot more than the average joe. But that won’t have made it any less scary, painful or nightmarish – and he had to get ill in the spotlight wondering all the while whether his career and life would be over. That’s something that I think everyone with Crohn’a disease and Colitis can relate to…I can.

I was a little bothered to hear the commentators comparing his illness to an injury. I can’t accept that. Yes being a sportsman and being off with an injury must be heartbreaking, but you can’t compare a sprain or a broken bone to a bowel filled with ulcers; to severe weight loss; constant diarrhea; crippling stomach spasms; fatigue; insomnia; vomiting, to name a few symptoms. What he overcame to get on that pitch was something many people wouldn’t try to come back from, something which would make even the strongest people give up.

And that’s why seeing him in such good health was so important. If he can do it so can the rest of us. I can’t say how he got well, or if (when) the disease will strike again, but if he can carry on so can we.

Since I started this blog I have come across so many incredibly brave people. It always amazes me where people with chronic and terminal illnesses get their strength from – it seems to come out of nowhere; something that stirs inside people when they are at their lowest moment. I see people climbing mountains while loosing their sight through diabetes to help others and their families not go through the same things; running hundreds of miles through desserts; dedicating their time to caring for others despite battling with a brain tumour – that’s just a few people I have come across.

People are truly inspiring. The IBD community are truly inspiring. Even living day to day with IBD is a challenge but the people I come across can’t settle for that, they want to jump out of planes, walk across fire and travel the world – they want to be the best they can be.

So it’s time for me to really get cracking with these challenges. Yes I’ve done a few, and some of them have been tough, but I’ve totally failed to crack on with the big adventures like walking along the Great Wall of China, or even begin learning French and learning to cook properly – I have no idea how I’m going to get a book published.

But if you guys can do these amazing thing it’s my turn to start taking things more seriously, so starting tomorrow I’m learning French properly. I’ll let you know how I get on…oh, and I, going to restart the reading challenge I only managed five months of reading a book a month – I’m not one to cheat.

Climbing 275 steps – one giant leap on my road to recovery


I’m in a fair bit of pain as I write this. I can’t quite described what’s going on, or

A giant leap for Winnie

A giant leap for Winnie

comprehend what the problem is, all I know is that it is something to do with my fistula and that it is nothing like I have ever felt before. I’m not quite sure why it’s happening, or what’s happening, but I’m not feeling great. I’ll talk more about it tomorrow, but I thought I would mention it now as I’m drugged up to my eyeballs, so please forgive me if this post reads a bit like a druggie’s random train of thoughts…that would be the tramadol talking!

Ok, so it’s no Mount Everest but on Saturday I climbed 275 very steep and winding steps to the top of York Minster tower. Why? Because it is part of the 101 Visit England places to visit before you die…and because I have never done it. Over the years I have had the pleasure and honour of playing in the Minster a handful of times with a brass band I was a member of (have I failed to mention I am a band geek 🙂 yes I play the euphonium..an instrument which is about ten times to big for me and makes me look like a small child playing a giant’s trumpet), during an annual charity carol concert. Playing in the Minster was always an overwhelming and truly awe-inspiring moment; the music swells up into the rafters, filling every nook and cranny of the enormous building, rising up into the heaven’s, creating an ambience that seems to vibrate around your very soul. Something about hearing a brass band perform in a church is so humbling, and the sound, the pure, stripped-back sound of a single note echoing through the pews would send shivers through the soul’s of even the most cold-hearted person in the world. It’s times like these that I feel the most alive.

At the start, before I ran out of puff!

At the start, before I ran out of puff!

Anyway, despite having performed in the Minster I have never walked up the Tower. So after weeks of umming and ahhing about making the trip to York me and Andy finally jumped in the car and braved the trip on Saturday. It wasn’t the nicest day, drizzly and overcast to say the least, but that wasn’t going to stop us. I have to admit that this is one of the things I love about this blog and my 101 challenges, that I can’t just say ‘oh I can’t be bothered’ anymore, or ‘I feel to ill’..if we’d sacked the trip off on Saturday just because of a little bit of rain I would have felt that I’d not only let myself down but I would have let down you guys, and the rest of the IBD and ostomy community…ok, that might be a bit over the top but that’s how I feel, and it drives me to keep going even when I just feel like poo!

And that is the reason why me and Andy paid £15 each to get into the Minster and climb the tower. I know £15 EACH!! If it hadn’t been for the fact that I had to do it for my challenges I would have down right refused to go in, I would have turned around and walked out just for the shear principle that I will not pay that much to go into a place of worship. I mean I have travelled to some incredible places and seen some incredible churches including Notre Dame and the Sistine Chapel and I honestly don’t think I have ever paid that much to go into a church before…I know that it costs a lot to upkeep a church of that size, but seriously that is a disgusting amount of money to just walk around a building and climb a tower, which, I hasten to add was covered in graffiti the whole way up (how people have time to etch their names into stone while being herded up those steps really boggles my mind, they must take chisels and hammers!)

Anyway the walk up was horrific. Yes, I know that it has been months since my

At the top - upset about the netting, ruined the view

At the top – upset about the netting, ruined the view

ileostomy op but I am still not as fit as I was before my surgery, and the whole situation was made worse by the fact that there were around 50 other people staggering up the steps, so there was no time to pause and catch your breath. Seeing as I have a slight fear of confined spaces – I know it’s neurotic but I’m one of those people who burst out of a lift when it opens like its been on fire – it wasn’t an ideal scenario. I spent the whole climb up clinging to the railing and listening to the family in front rabbiting on and on at each other – I got the impression that someone was in big trouble! Winnie (my ostomy) was not having the best of days, but managed to stay calm enough not to have a leak as I tried to heave my tired legs up the hundreds of steps, very much aware that if I had a dizzy spell the rest of the people behind me would fall down like dominos back into the Minster. It wasn’t my favourite experience, but when I reached the top, exhausted and with legs shaking like jelly, the views where beautiful, (if not ruined by the barbed wire netting all over the place no doubt to stop jumpers) and I felt a massive sense of achievement that I’d climbed all those steps – ok, so it’s not that big an achievement but when you take into account that months ago I couldn’t walk to the toilet and back without someone holding on to me, it really is a giant leap in the right direction.

The sense of achievement and relief was short-lived when I realised I had to walk all the way back down, which is always harder than going up, and was made worse by the fact my muscles seemed to have locked and were frozen in the walking upstairs position. But at the end of it I might have felt a little tired and dizzy and my legs might have felt like jelly, but I looked a down sight better than a lot of the people who came red-faced and sweating down the steps, puffing and panting like they’d run a marathon – and I guess they didn’t have the excuse that they’d had major surgery just a few months ago.

MMM CHOCOLATE

MMM CHOCOLATE

After completing the challenge me and Andy treated ourselves to a cup of hot chocolate at a nearby chocolate cafe. I’ve been to York a fair few times but until this weekend I had no idea that York was most famous for its chocolate heritage. It seems that York is the birthplace of KitKat and other delicious treats that I unfortunately haven’t had the pleasure of eating in years BOO! I was so excited as this was the first time I had been able to have a hot chocolate in public since I was diagnosed with being lactose intolerant around four-years-ago. This cafe did dark chocolate and the option to have soya or rice milk instead of the normal dairy milk. It was an unexpected treat, and very rich and yummy…but as per usual Andy’s drink looked far tastier than mine and I have to admit that spoiled it a bit for me as the green-eyed monster raised her ugly head, and I spent the majority of the time in the cafe wishing I could have a sneaky taste of his very scrumptous looking white hot chocolate! – sometimes I despise being lactose intolerant.

We finished off the day walking through the Shambles, which despite the drizzle was a very enjoyable experience, ending up in a vegan cafe for a cake, as I wanted to have a little treat, which was an underwhelming and pricey experience. The pudding was mediocre and I didn’t like the very hippy atmosphere of the place (nothing against it, just not my cup of tea), Andy really didn’t like his coconut paradise cake…not really sure who decided paradise was the right word to describe it, more like bouncy sludge?

I really am tiny!

I really am tiny!

Anyway soon after that we were forced to give up and go home as my remaining colon started kicking off and my fistula started to cause me problems. Luckily that was at the end of a very full day, so the timing wasn’t too bad, although I obviously would rather it didn’t kick off at all.

My verdict? York is a beautiful place with stunning heritage, shops and scenery. Don’t visit the Minster unless you really have to see it, it is definitely a once in a life time experience. The views from the tower are beautiful, but they are nothing compared to other tall buildings across the world such as The Eiffel Tower or the Empire State Building. But, although it was a lot of money, I don’t regret it. I feel like I have really achieved something in my road to recovery and in embracing my life with a stoma, and shown that you really can do anything and that having an ostomy shouldn’t stop you doing whatever the hell you want.

At the Minster

At the Minster

Oh, if you go reward yourself with a hot chocolate. You won’t regret it!