Surprise!


It’s been about a month since I took part in the 10km Walk It event for Crohn’s and Colitis UK, where I walked 10km (obviously) around Manchester city centre with a bunch of other people supporting the cause.

Leading up to the event I’d been a bit miffed, to put it politely. My family didn’t really seem at all bothered about my fundraising, they didn’t ever acknowledge my walk; I’d post things on Facebook about it regularly in the hopes that they would see and sponsor me and nothing much seemed to happen. I started fundraising in March and had planned to do the walk with my boyfriend. I’d suggested to my mum that she it might be nice if she came and did the walk with me, I said she could bring her girly friends if she wanted as I know they’d enjoyed doing a Race For Life event a little while ago, but she said she’d feel bit weird walking with my boyfriend and I and at some point she actually said “and what would I wanna do that for?”, as you can imagine I was feeling pretty upset about the situation. A lot of my family members take part in runs and various other charity fundraising events and I’ve always been as supportive as I possibly could – sponsoring them, sharing their Just Giving pages, being at the event to support them, so I was feeling pretty rubbish about them completely ignoring my event, especially as this was such a challenge for me. Since being diagnosed I’ve found walking any amount of distance to be extremely tiring and often painful, my hips and knees suffer terribly when I walk and so this was going to be tough. I know 10km isn’t far, but to people with Crohn’s it can bloody well feel it. So the fact that the majority (there are a few that are very supportive who I can’t fault but mostly the rest have been pants) of the family  just didn’t seem to care had severely dampened my spirits.

As some of you know I do something called paper cutting for a living (click here to see exactly what that is) and I’m part of a wonderful crafty group on Facebook run by a famous paper cut artist and someone I consider a lovely friend, Paper Panda and I will often turn there for help and advice and to just rant about life in general, as many of the members of this group have come to be good friends of mine. Anyway, I told them about how I was feeling crappy because my family were acting crappy and they cheered me up as they always do. But they did something even better than cheer me up – they supported me! One lady asked for the link to my Just Giving page and all of a sudden I’d passed my £100 target! In one night! And the craziest thing about it was most of these people were complete strangers, they were just being kind. A few shared with me that they too have Crohn’s or Colitis, or they know and love someone who does. People were so generous. One lady told her staff about my walk and her staff very kindly donated all of the tips that they had earned that night – I couldn’t believe it!

So it was safe to say that my spirits had been lifted, but I still couldn’t help but feel disappointed at my family, I got that they don’t understand Crohn’s and quite frankly I don’t think many of them care to and that’s fine, but whatever their cause has been, whatever they’ve ran for and raised money for I’ve supported, not because it’s necessarily a cause that I support personally or understand but because I know that they care about it and as someone I love and care about then that has always been enough for me to support them. Eventually the sponsors started coming in from my family but it still felt like it was a bit half hearted, not to sound ungrateful I am grateful for every penny we raised, but it felt like they were doing it out of politeness.

About a week before the walk my parents had said they would come to see us cross the finish line, I couldn’t be happier, this is all that I’d wanted- my family to share the day with me, I was starting to feel excited about the day now.

The day finally arrived and my boyfriend arrived in Manchester bright and early in our purple ‘Crohn’s and Colitis UK’ t-shirts on which made me feel a bit uncomfortable because my girly prudish side was telling me that it just isn’t appropriate to wear something that has the word ‘bowel’ on it in public and then I saw about 200 other people wearing the same t-shirt, all with the same word ‘bowel’ on the back and it strangely didn’t seem to make me feel any better – I was starting to wonder if this was even a good idea. I’d never really met anyone else with this disease, not in real life and to be honest I was a bit scared of someone talking to me and asking me what my story was and selfishly it was because I didn’t want to ask them what their’s was, not because I don’t care, I do care more than anything in the world, that was the whole point of me doing this walk because I care. I was just scared. I’m scared of people telling me how bad their story has been, I’m scared that someone will just show me a colostomy bag and I’ve never actually seen one and if you’ve read my blog from the beginning you’ll know that it is one my biggest fears, though I congratulate and admire every single person who lives with a bag, I couldn’t imagine ever being so brave. I was scared that people would tell me how great they are despite their illness and I’d feel guilty because I’m just not very good at this thing we call life, I’m always a bit lost and now I’m unwell I just haven’t really managed to find footing at all – I was just scared of coming out of my own little bubble I suppose but luckily everyone else seemed to be just as shy, which thinking back is a shame really, hopefully next year we’ll all be a bit braver.

Anyway, my boyfriend and I arrive early, and because I’m an anxiety filled divvy I wanted to sign in right away because well what if lightening strikes down and we’re not signed in? What if a giant comes and steals the sign in sheets and I’ve not had thteae chance to sign them? What if they just don’t know I’m here and the world will just end? But my boyfriend wouldn’t let me and he was driving me mad! I didn’t get it! Why can’t we just go and sign in and then it’s done and we don’t have to worry about? But no, we must go and get some breakfast first says my boyfriend who doesn’t eat breakfast, but I do so I’m swayed by the promise of food and a cup of tea and I settle my anxiety down after one more “but if we just sign in now…” and being shut down by my boyfriend and off we head to a lovely little tea shop next to the Cathedral.

Whilst at the tea shop my phone is stolen from right under my nose, nope not by a masked burglar but from my boyfriend. It was at this point I clicked that he was onto something. I protest and kick up a fuss about how he better not put a stupid status on my Facebook like “I have piles” because surprisingly that isn’t funny to someone with a bowel disease and he ignores me and leaves. He goes outside and makes a phone call as I turn into James Bond and begin searching my phone for clues of what he used it for – not Facebook it would seem. He’d been in my contacts and the silly man left it open on my mums number. All sorts of things are going through my head and eventually I settle with “oh sh*t he’s going to propose”. He walks back into the tea shop with a little shifty look on his face “you better not propose to me on this walk!!” I blurt out, but he plays along, he looks all hurt and upset that I wouldn’t want him to propose here, today (he’s on strict instructions to only propose to me if we are in front of one of my favourite castles – no not historical castles, either Cinderella’s Castle at Disney World or Hogwarts Castle at the Harry Potter studio tour in London). I ask him what he wanted my mother for and for a moment he looks shocked – I’m not just a pretty face after all 😉 but again I’m stumped when he tells me that he was just letting her know where we had parked the car so her and my dad could park in the same place later when they arrived.

Our tea and toast arrived after what felt like an hour, though I’m sure it wasn’t and we left to rejoin the other crohnies at the Walk It event. We take a seat on some grass near the the starting line as my boyfriend still refuses to let me sign in and I look up to see my mum walking towards us with one of those purple bowel t-shirts on that we’re all wearing, I was so happy and then behind her I see her friends! I’m made up! they’re like extra family members so it was really special that they turned up. Then behind them is my nans husband, he’s as good as a grandad to me, he’s been there all my life and I couldn’t ask for a better husband for my nan – when I saw him I lost it, I was crying like a little baby. It was so amazing that he had done this, that all of them had, I couldn’t believe it, there they all were with their purple bowel t-shirts on. After they’d all had a laugh at how oblivious I’d been to it all and had a laugh at me crying I was finally allowed to sign in!! I realised that it was because if I had signed in I would of seen my mums name next to mine and my boyfriends cover would be blown.

We took a few photos and one with the mayor and off we went on our walk. The walk was lovely, the weather was nice, blah blah blah…. let’s skip to the end. We’ve all arranged to meet in a local pub/restaurant to celebrate completing the walk – great I think, sounds like a good plan. So mayorwe go our separate ways, my boyfriend however decides that instead of going straight home we’re going to nip to the Trafford Centre first (a big shopping place, like a mall) so we can have a sneaky Barburrito and a Krispy Kreme, again I thought yeah, great plan, we’re not meeting the others for another couple of hours, why not? So we eat our burrito and I decide that I fancy having a look in Waterstones, and then I want to have a look for some new flip-flops, my boyfriend is growing impatient however and is spending a suspicious amount of time with his head in his phone. Eventually we leave and make our way to my house.

I walk into my house with every intention of going and flopping down on the coach and not moving until we have to go to the pub. There are lovely congratulations banners in the hallway as I walk in though, “aww” I thought, my sisters must have done that – cute. I see my dad in the kitchen and head there to give him a telling off for being in on the secret of my mum and co turning up for the walk. I walk round the corner into the kitchen and hear “SURPRISE!!” and all of my family are there – again I cried. In fact I went into shock and had to take a moment because I was shaking so much!

I couldn’t believe my mum, dad and boyfriend and done all of this. I had cakes supplied by my grandad and his wife, champagne from my nan and her husband, there were balloons and food on the go, bunting in the garden and I hadn’t had the foggiest of ideas that any of this was happening. On the one hand I was so happy but then on the other hand I was feeling awfully concerned about how well my parents and boyfriend can keep a secret.

The worst part was, that week I’d been shopping for my mum for party things. I thought we were shopping for my little sisters communion which was a few weeks away at the time. So it was me who chose the lovely bunting that was now hanging in the garden for my surprise party, it was me who chose the crisps and nibbles that were on the table for people to enjoy and all of a sudden things start occurring to me. My mother had recently asked me what she should get me to drink if they were to ever have a party again, I’ve not drank since being diagnosed and have only recently started having a beer or two when out or at parties, so I told her beer. I thought it was a bit of a random questions but didn’t think much about it after that. When we went shopping she seemed all too willing to let me choose things like decorations and cups and plates etc and I’d thought she was just being nice or that she just couldn’t be bothered choosing for herself. I’d thought that she was being really good preparing for a communion party that was almost a month away, but no. They were all lying to me. The worst part of it all was that my mum had said the night before my walk she was having a little get together at our house with her friends that night, so as is always the case in our house with five children it often looks like a bomb has hit it so she asked me to help her get the house in perfect order before they came so I spent the day before my walk cleaning the house and making sure the garden was looking nice – her friends didn’t come round, that was another lie, to make it worse her and all her friends were posting status updates on Facebook as though they were all together at my house. I honestly don’t think I can trust anyone anymore!

Despite the shock of it all and the rollercoaster of anxiety and paranoia mixed with happiness and excitement and relief, I had a really great day and to make it even better we raised over £600 for Crohn’s and Colitis UK!

 

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Dinosaurs, Mitchell’s and Demons… Oh my!


The past couple of weeks have been pretty hectic! last week I had my first endoscopy, and I did a 10km walk in aid of Crohn’s and Colitis UK, you may have seen me pestering for sponsors if you follow me on twitter, I apologise! Though it was worth it as we raised over £600!! then this week I had a hospital appointment to check out a dodgy lump on my leg. Now I’ve wrote it all here it doesn’t seem like I’ve had such a busy couple of weeks does it? I think I’ll pop these events into a couple of blog posts otherwise it’ll just end up being an almighty novel and you’ll be terribly bored.

So let’s start with the endoscopy shall we? It’s surprised me that I’ve managed to go 2 years of having Crohn’s without having an endoscopy yet. I’ve been having some pain in my upper left abdomen area and some bleeding which looks as though it’s coming from high up in my digestive tract (that is as much detail as I’m going to go into as I’m about to eat a bagel), so I went to see my consultant about it, I’d been to see him about it before christmas but he didn’t seem concerned at all, in fact lately he just seems to want to get me in and out of his room as quickly as he possibly can. anyway, the pain had started to get worse, there was more pain when I was eating again, just rolling over in bed was leaving me in agony so I called my specialist nurse who told me to up some of my medication; I currently take 2 x Azathioprine tablets (100mg I think that is?) and she wanted me to take 3. I then had an appointment with my consultant made for the following week. Upping my medication was awful, I had a constant migraine, I felt so sick and it triggered vertigo which I’ve gotten quite a lot since having Crohn’s.

Then I finally had my appointment with my consultant. When I got there he seemed to have no idea why I was there, he had no idea that i was taking a higher dosage of medication, and didn’t have a clue that I’d spoken to the nurse and that she’d requested I be seen urgently. Now call me arsey (no pun intended) but is it wrong of me to expect some form of communication between the members of the “awesome” team who are taking care of my health? So to say I was annoyed within the first minute of me being at my appointment would be an understatement. So, I told the consultant waht was going on and that after speaking to fellow crohnies I believe I could have pancreatitis as a result of my medication, we’ve all had the same symptoms etc and so I really believe that that is what is wrong with me. I told him I’d spoken to the nurse and that she had told me to take an extra tablet, but it was making me more unwell, apparently the reason for this is because my body simply isn’t big enough to handle that amount of medication – see, I told you they were awesome 😉  he went on about how he thinks there’s something wrong in my stomach though i knew that there wasn’t, but he wanted to do an endoscopy anyway.

Naturally I didn’t fancy the idea of having a camera shoved down my throat, because on top of my phobia of all things medical, I also have a phobia of being sick (yes really, I’ve only threw up twice since the age of about 12 and both times were because I was drunk, I do anything to avoid being sick). So I told Dr awesome that the only possible way I would allow him to perform an endoscopy would be if i was in such a state that i wouldn’t have a clue where i was or what my name was, for once he agreed and we discussed options. I was given the option of being completely put to sleep, but then that would mean going to a different hospital and a possibility of having to stay in, the dr said that in that case he would also lose all control of the investigation too. The other option was to be sedated, now if you’ve read my blog since the beginning you will know that when I had a colonoscopy I was not sedated and it was the worst! So being offered sedation felt like christmas had come early. So I went with this option.

I’ll skip a bunch of days to the actual day of the camera being shoved down my neck. So I get onto the ward and the nurse comes and discusses the possibility of death by camera down neck and greets me with my arch-enemy – the cannula! but guess what? I didn’t even cry! Though I did think I was going to pass out while she was rubbing my inner elbow to try to get a vein! I tell her I want the most sedation I can possibly have and off she goes to do whatever it is they do when they abandon you in your nervous state and an older lady comes in and settles herself in the bed opposite me. Her nurse comes along and gives her the same spiel. So I listen in, because that’s just the kind of awful person I am, I love a good ear wigging, but I immediately regretted ear wigging this time. This lady was a mess, but what made her being a mess even worse was because she had been here before. This was her third endoscopy and she was still as terrified as I was for my first, if not more! I’m listening to her and she’s going on about how she’s had almost every procedure you can think of (she’s probably an exaggerater though as she had all of her extremities in tact so I’m pretty sure she hasn’t had an amputation procedure before – yes I’m pedantic and nosey!) and I am sitting there wanting to cry, or run, or scream – just something, but nope I sit there frozen and then her curtain opens and her nurse leaves and this woman looks at me, “are you having the same as me?” she asks, this woman is clearly as nosey as I am. “Yes I think so” I whisper, I’m not sure why I whispered though, fear probably, though now the fear was because this woman was clearly a few fries short of a happy meal.

You’d think I’d just told this woman I was about to get my head chopped off the way she looked at me, it was like she felt so sorry for me. Normally you’d expect a person to play it down, pretend for my sake that it wasn’t a big deal, but no, this woman went all out and told me of the horrors she’d experienced when having an endoscopy. I told her it was ok, I’m being sedated, she seemed marginally relieved “ooh good! thank god for that!” she said, then she followed it with “though mind you, you’re not completely out of it while sedated, you should be alright though.” I was beginning to look forward to going in to the operating room just so I could escape this woman. She kept rambling on, asked me why I was there (super nosey) and I explained I have Crohn’s, I got the usual response “what’s that then?” and tried to explain but she was too excited to tell me about her own reason for being there and all about her dodgy neck (can you tell I’m not a people person by the way?) and eventually another nurse came to get me and I hopped off that bed and all but sprinted out of the ward to the operating room.

Once in there I lay on the new bed, the scary one surrounded by lots of machines and wires and things that A level biology never even slightly taught me about and Dr “awesome” tried to have a catch up as you do, asking me how my business was going blah blah blah, all whilst holding a hefty syringe, I think after a line of “mmm“, “yep“, “nope” and “k” he got the picture and the nurse put the lovely oxygen tube in my nose – I love that oxygen tube, it’s like breathing in heaven. Followed by some kind of contraption to keep my mouth open which I could only imagine being a prop in the next Fifty Shades of Grey movie. Then came the syringe to my cannula and I must have drifted off and we all lived happily ever after…

 

………………………………….

 

Ha! Not! I woke up!! Right in the middle of the thing!! I could feel this thing being wiggled around inside me and I’m gagging and wretching like I’m trying to give birth to a dinosaur but from my mouth! I must have been panicking and showing some kind of sign of distress because I hear a lady’s voice, no not the angelic type and luckily not the one that tells you to go into the light, it was a nurse telling me they’re taking it out now and I’m gone again and next thing I know I’m on the ward again and I’m somewhat aware that I’m in the foetus position on this hospital bed and I vaguely wonder, as I often do when in a hospital bed, how many people have died on this same bed and I notice that my face is stuck to the sheets – I must have cried, it sounds like something I’d do. Then the nurse comes and brings me a cup of tea and a biscuit and told me exactly what I’d expected – they found nothing at all wrong in my stomach and I was free to go once I felt ready.

So I went home and was looked after by my boyfriend and mum, I say looked after, I only stayed with my mum for a couple of hours before I went to my boyfriends to avoid the hustle and bustle of my house and I slept like a baby all day. The next day I woke up, went about my morning activities feeling pretty sore after the rummaging around the doctor did in my stomach and talking a bit like Phil Mitchell because of my poor throat and I go to put eye liner on – my eye-ball was red! I looked like a demon, I sounded like Phil Mitchell, I felt like I had a herd of elephants rolling around in my stomach and like I needed to sleep for at least a thousand years and it was all for nothing, a waste of time just like I’d told the doctor it would be and the sedation was a pile of poppycock, it didn’t do it’s job, it didn’t keep me asleep and it didn’t erase my short-term memory as promised and now I’m probably going to have nightmares for the rest of my life – okay, maybe not nightmares, it wasn’t that bad, but I definitely won’t be going for another endoscopy in a hurry!!

Moral of the story? When you as the patient start to know more about a specialists specialist subject, it’s time to get a new specialist. I’m now on a hunt for a new IBD team in the north-west of England if anyone can suggest a good’un?

Meeting Zoella


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Okay, so I didn’t actually meet famous video blogger (vlogger to you cool kids) Zoella but I did watch one of her YouTube videos in full for the first time recently. I’ve always been a bit sceptical of these vloggers; how are they so famous? How do people pay them to video themselves doing every day mundane activities like washing the dishes or going for a walk? I despised that my little sisters absolutely adore and idolise Zoella and fancy the pants off her boyfriend Alfie, and I resented buying my 12 year old sister (now 13) a £20 make up bag just because it said Zoella on it, because (I say this with full awareness that I sound like Nikki from 2006 Big Brother)- who is she?!

nikki

em waI would love my sisters to aspire to be like Emma Watson, or Princess Diana, or even Beyonce, someone with obvious talent, or brains, or compassion. Someone who at some point in their life has made a good portion of the world think ‘wow’ because of something they’ve done. Emma Watson has become the face of feminism and could one day be the reason that my sisters or future daughters aren’t subjected to wolf-whistles from pigheaded men when they walk down the street, or are finally respected as highly as they should be in their careers, or are able to at last be seen by everyone across the globe as dianaintelligent and invaluable human beings rather than just objects who give birth and please men. Princess Diana was a woman who to this day astounds the world with the infinite amount of kindness and compassion she showed to others during her life. Then there’s Beyonce – ok, she was kind of just plucked out the depths of my brain when I forced myself to think of epic women but she is epic: she’s got an incredible voice, she exudes girl power, she works damn hard and has this incredible fearless beypersona which as a woman makes me personally feel like I can take on the world simply because Beyonce believes I can.

These women are women who I could probably only ever dream of even being slightly as awesome as. Zoella on the other hand is just like me, there’s nothing special about her. Now please don’t get me wrong, I can’t sit here and say one bad thing about her. She’s beautiful, she seems kind, she seems intelligent and she seems to be a genuinely good person but is she someone who teenage girls should aspire to be?

The video I watched was of her and Alfie shopping. I sat watching with my 13 year old sister after originally turning my nose up and exclaiming “why must you watch this utter crap?!” but after she just laughed at me and failed to see that she must surely be frazzling her brain cells by watching another person shopping, I sat down and found myself gradually getting sucked into this nonsense. Was I enjoying watching these two people shopping and telling me which deodorant they were buying? I’m not sure. Maybe ‘enjoying’ is slightly too strong of a word, but I didn’t hate it. I just didn’t get it.

Part of me admires these vloggers, not just Zoella, but the others that have “made it” too. How lucky they are to be able to live the life they are living and all because they film themselves living it. They get paid for doing their hair and eating pizza and talking about what shoes they think will look great with what bag in front of a camera. They’re living the dream, right? Maybe… Then there’s the other part of me which thinks that they’re representing this dream world. This fantasy life which all kids believe is accessible to them because they have a smart phone and access to YouTube.

One of my sisters, if you ask her what she wants to be when she grows up, will often reply with “vlogger”. Is that a genuine career now? Is it something to aspire to be? I know you’re probably thinking, what a hypocrite she is, asking that question as she’s writing a blog. The irony isn’t lost on me here but the difference is I never grew up wanting to make a living from sharing every aspect of my life with millions of strangers, I write about my life in the hopes of improving my writing skills so that I can one day make a living with a skill that I’ve learned. I went to university to learn more about English language and literature so that I can be better at it and use that skill, and alright I admit I wasn’t the best student but I still earned my degree, but some of these vloggers are simply people who are lucky enough to have a natural charisma and are able to use simple video editing software and are doing exactly what thousands of other people are doing except they’re doing it with a better camera, in a better location and with a bigger budget and so they got the most “thumbs up”.

Are kids not striving for meaningful careers anymore? Are they not dreaming of becoming doctors or police officers or teachers or world class writers and scientists, because why should they try to be those amazing things when they can vlog and make easy money and of course be famous? I even found myself watching this Zoella video thinking “I could do that… maybe I should do that… forget everything else! Where’s my camera?”, but it would just be a fantasy, like the American dream that everyone used to chase except now it’s the   Video Blog dream.

I don’t want you to be reading this thinking I hate Zoella or anyone else like her who makes a living doing what she does, because I don’t. I applaud them all, what they have achieved is incredible and I am somewhat envious of them, I’d be lying if I said I wasn’t. I am amazed that what they do has got them where they are because if you told me 5 years ago, not even that… 2 years ago, that people will be making millions from filming themselves doing every day things like putting on their make up or playing Call of Duty, I’d have thought you were having a laugh, either that or I’d be sat typing this from Zoella’s (or should I say Daniella’s) perspective in my mansion surrounded by all the money I’d made from videoing myself pouring my cereal this morning. Yet instead my Instagram and Snapchat feeds are filled of videos of people I know (and don’t know) filming themselves doing mundane things in the desperate hope of maybe getting even a slice of that life.

I guess I just don’t understand it. I mostly don’t understand how it happened because I don’t get how people can sit and watch people live their lives on a screen rather than go out and live their own lives outside in the real world. I don’t get why people would want to watch someone else play a video game rather than sit and enjoy playing the game for themselves. Why would someone torture themselves by watching a YouTube “celeb” go on shopping sprees in shops they could only dream of shopping in rather than working towards the best career they can and being able to finally shop there for themselves. Are we just becoming a society of people who would rather watch other people enjoy life than go out there and enjoy it for ourselves?

Are we becoming what Wall-E predicted?

I Have a Story to Tell…


…Or Do I?

I’m still feeling pretty crappy after recently upping my medication dosage, but the nurse warned that that would happen. So I’ve spent a lot of time in bed over the past few days but as I mentioned in my previous post, I’m sick of being unmotivated and stuck in a rut so I thought while I’m sat here in bed doing not much at all, I’d give this writing lark a go.

Apparently the key to good writing is writing often; but what if you have nothing to write about? I’m sat here with my trusty dinosaur pen (he’s a Parasaurolophus), a pretty awesome Breaking Bad note book, my gloriously pink Macbook with Word open and patiently waiting for me to type something… anything, with a “Writing a Novel and Getting it Published for Dummies” book trying to figure out where on Earth do I even start? I thought I’d start with a character, any character, but I can’t even think of a name for her… him? Probably her

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My ultimate aim in life is to write a novel, it always has been; I’ve always been a daydreamer so I always thought eventually I’d be able to make a living from it. I don’t have a clue what to write about though so I’m hoping to have one of those Stephanie Meyer type dreams, or JK Rowling-esque epiphanies. I thought in the mean time I would write my series of children’s ‘learn to read’ type books that I’ve been planning for a little while. I really think my idea is awesome (is that big headed of me? I’m not sure, but I don’t care because it is pretty darn good!), and strangely enough in an almost Stephanie Meyer/JK Rowling way, the idea came to me just as I was about to drift off to sleep so I shot up and grabbed my phone and typed everything I’d thought of into my notes before I forgot. Needless to say, after typing in my sleepy state that night it was all a load of gobbledegook when I read it the next morning but it was enough for me to remember everything I’d imagined. I have the names of all the characters, I know exactly what they want in life, I even know a bit about each of their personalities. I have the beginnings and the ends for each book, I just don’t have the middle. I think I’m struggling because I can’t draw and I feel like I need the pictures that I see in my head to tell the story before I can find the exact words for the story and stick people just don’t seem to fit the job.

Maybe I should invest in an ‘Illustrating for Dummies’ book.

I know I said at the beginning of this post that I thought the key to good writing is writing often, and that probably made you think that that was the reason I was writing this post, you know, to keep the creative flow going, writing often and being a good motivated person. The truth is, and this is hard to admit, even to myself… I think I’m just procrastinating and I don’t now how to stop!

How do people do it? How do people get something they want to do into their head and then get up and go and do it and see it through to the end and not get bored, quit and get another daft idea in their head which they will again get bored of quit? It seems to be the story of my life really, but I am a Gemini, and by nature we are Jacks of all trades and we are pretty flakey. So really, it’s not even my fault, it’s the suns fault or the moons or something, I’m not entirely sure. Maybe I’ll write a book about an astrologer who predicts something awesome like the end of the world or the birth of an almighty sorceress who takes over the world and orders everyone to love each other, watch musicals, eat cakes and have pet dogs… see what I mean about procrastinating? I’m just talking (typing?) absolute rubbish.

I’ve just flicked through that book, the writing for dummies one. It said that to be a good writer you must read; would I be awful if I put my laptop down, closed Word, shut the dummy book and picked up my Kindle and read my new book until my eyes fell shut? God, I’m so bad at self control. I was the same in school/college/university, I never finished my work and I definitely never handed homework in on time, it’s a wonder I ever got any qualifications. Did I ever mention that I have letters after my name? Danielle Shearer BaHons … you’re impressed aren’t you? No? I bloody am! I have no clue how that happened. I wonder how many letters you can actually have after your name? Like is there an actual limit? I’d have all my letters on my grave stone, just to be a real jerk. Also, I am  aware that I have mentioned my degree in pretty much every post since I got it – my bad! I apologise.

I’m doing it again. Talking utter flapdoodle. Yes I said ‘flapdoodle’. In my hour of procrastination I googled synonyms for ‘Gobbledegook’ and that was up there with the best ones that aren’t swear words, so there you have it. I’m done now. If you made it this far I’m truly sorry that you’ve had to experience my minor meltdown.

Goodnight!

Danielle Shearer BaHons 😉

xox

P.S. here are synonyms for ‘gobbledegook’ – You’re welcome!

gobbledygook
ˈɡɒb(ə)ldɪˌɡuːk,-ˌɡʊk/

noun

informal
noun: gobbledygook; noun: gobbledegook
  1. language that is meaningless or is made unintelligible by excessive use of technical terms.
    “reams of financial gobbledygook”
    synonyms: jargon, unintelligible language, obscure language;

    informalcobblers, codswallopcock, stuff and nonsense, double Dutchtoshcack;
    informalhavers;
    informalgarbage,flapdoodle, blathers, wackbushwa, applesauce;
    vulgar slangshitbullshithorseshit,crapbollocksballs;
    vulgar slangcrapola;
    vulgar slangbulldust
    “the authority wrote him a letter full of legal gobbledegook”

 

Dogs, Degrees and Daydreams


I feel like I always start my blog posts with “sorry it’s been a while”, I’m so awful at posting I think it’s been about a year since I last posted, I’d love to say I’ve cured my Crohn’s and explored the world since then but alas I’m still doing a whole lot of not much.

I’m currently sat up wide awake in bed at 19 minutes past midnight feeling like I’m going to throw up (yes I’m still super glamorous, I know!). I’m currently in a flare, I have new pains in my upper left abdomen, a bit strange as my Crohn’s was diagnosed in my lower right area, my Ileum I think they call it. I have pain in that area too and I’m apparently bleeding somewhere along my intestines, which is always fun …. not. After a call to the specialist nurse she has instructed that I eat only soft, bland foods like mashed potato, or liquids like soup – I hate soup! I’ve also had to increase my medication (Azathioprine), which would explain my sickness right now and the clumps of hair falling out of my head.

I’m still mentally struggling with the Crohn’s and my new life, I find it very hard to see the positives. As I’ve mentioned before, I had a five year plan which involved moving to America, travelling to South Africa to volunteer and various other things which seem impossible now so I think I’m just still stuck in that rut.

This past year I started my own business, paper cutting (find me on Faceboopapppk – Love Liesel) which is going ok, slow but it’s ok. I enjoy doing it and I surprisingly earn more money than I ever earned in my last job at a Holiday Inn! Plus I can sit in bed and paper cut when I’m having a bad day. Win win!

I officially graduated. I left uni in 2014 but I never got to go to my graduation ceremony because I was too sickgrad for the first one and away for the second one. The ceremony was held at Liverpool’s beautiful Anglican cathedral and lasted far too long and was far too boring – all that for a photo in a cap and gown!

My little sister was diagnosed with Type 1 diabetes, she was 12 (13 now) and it was a big shock, we were all pretty clueless about diabetes, especially type 1. It’s been a massive learning curve, but she is honestly the bravest kid I know. She has never once complained about injecting herself, she has just got on with it and has for the most part just been totally positive about it all despite it being a complete lifestyle change for her – I couldn’t praise her enough really.

I also got a dog! I have no idea how I convinced my parents to allow me to have a dog in their home but I did and she’s awesome! I rescued her from Merseyside Dog’s Home on 1st May last year and it was one of the best decisions I have ever made. She’s a 2 year old Staffordshire bull terrier cross, in fact, she’ll be 2 at the end of this month. We don’t have a clue about her past except that they believe she was a stray; she had came to Merseyside after being at Manchester Dog’s Home, however after the dreadful fire there all of her details were lost and everything we know about her, like her birthday, is just a rough guess. None of it matters anyway, because she is such a loving and loyal dog. She has never been naughty, she’s never caused us any issues despite her having a rocky past, she’s just been good as gold and fit right into our home.

Funnily enough, when Millie first came home with us she started to become unwell, she’d millieonly been with us for 2 weeks. She wouldn’t eat and was having bloody stools (sorry if you’re eating and reading this!) and I was going crazy with worry. I rang the vet on a sunday morning and had to wait until the following day to take her in for an appointment, that was the longest sunday of my life and I spent the whole day crying. It was that day I realised that Millie had passed her probation period with us and she was most definitely staying – I loved her too much already! I took her to the vets the following day and you’ll never guess what they diagnosed her with! – Colitis! The other form of IBD, Crohn’s disease’s partner in crime. Luckily for Millie, a short course of antibiotics and anti-inflammatories and she was right as rain again. It was like we were made for each other! She’s been such a blessing to me so far and I look forward to every day with her. Before Millie I felt like there was nothing for me, I felt pretty useless, but she gives me a reason to get out of bed every morning and she makes me laugh and smile every single day, they should prescribe dogs to everyone with depression or anxiety because she works wonders for mine!

Anyway, I got to writing this mighty long blog post because I was thinking that I need to start going somewhere. I need to start doing something… yes, I know this seems to be a recurring theme on my blog. I’ve recently been looking at teaching, furthering my degree seems like a good idea; I think I’ll have a look at primary school teaching, I don’t think I could cope with hormonal teenagers! I have a million and one book ideas, so I need to find some motivation to sit down and finally give those ago and I’m also on the hunt for a publisher or some way to publish my monologue which I wrote way back in college but have always been so proud of it, it’s the best piece I’ve ever written. Perhaps I’ll have a look for some creative writing classes too. I was looking for a book club but apparently they’re just not a thing anymore, maybe I’ll make my own – maybe I’ll make a book blog.

Millie has just plonked herself on top of my feet, it must be time to sleep!mm

I’ll write again shortly, and I’ll aim to make sure it’s before 2017!

Goodnight

xox

 

 

A dream is a wish your heart makes…


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I didn’t write about Florida!! Yes I know you probably don’t care, but I said I’d see if I wrote about it and then I said I would write about it if I didn’t already but Orlando is probably my most favourite place in the world and though I’ve been 5 times before, this was my boyfriends first time and our first real, proper holiday together, so it’s pretty exciting stuff!

Actually I don’t think I’ll write much about the holiday, I’m just going to share some of my favourite photos from Disney and Universal. A favourite part of this holiday was Universal Studios Halloween Horror Nights, we went and it was crazy! I have never been so terrified- we went initially because we are big fans of The Walking Dead and saw the themed haunted house on Ellen, so we had to see it for ourselves and we also love The Purge, which I think was new there last year, but that was mental! We managed to see most of it, just gutted we didn’t get to see the Halloween (as in Mike Myers) house, because that’s my all time favourite scary movie, but the lines were like 2 hours long for most houses, so we had to make sacrifices- it was so worth it though!

Also I’ve mentioned before that I am a huge Harry Potter fan, so a big part of this holiday was going to The Wizarding World of Harry Potter- I had already been to the first part with Hogsmeade and Hogwarts castle itself with my family after it first opened and that was incredible, but the new Diagon Alley/London section was just… There are no words! If you’re a fan (or even if you’re not) you NEED to add Universal Studios, Orlando to your bucket list just for the Harry Potter section!

I appreciate that I am so fortunate to have been to Florida so many times and visited Disney and Universal more than most can, and I always worry that people are going to judge me when I talk about my holidays there and that they’ll think I’m a snob or a spoilt brat or whatever, but please understand that my family and I, have worked so hard and saved for so long to go on these big holidays every few years rather than going on small holidays, say, once a year or even days out to British theme parks/concerts etc. I know I don’t have to explain myself but, just if you’re thinking I’m bragging, I’m not bragging about my wealth (I am by no means loaded or anywhere near) I have just been so, so lucky in life, so maybe I’m bragging about that – just a little bit.

Here’s some photos!

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1 Year On…


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This month is my first anniversary of my diagnosis and also my first anniversary of joining WordPress apparently (yay).
What have you done in that year? I hear you ask.
Well…
Nothing.
Not really anyway. There is nothing I can say I am super proud of. I mean big things happened after the whole “you’ve got Crohn’s” thing – the sad death of my little Nanna, and my first proper holiday with my boyfriend to Walt Disney World, Florida – which I’m sure I wrote about, I must of done (I’ll check and if I haven’t then maybe I will write a little something about it because it was awesome!), I got my degree in English (life regret right there) so I can now write my name with ‘BAHons’ at the end, though I probably won’t ever be so pompous as to do so. I was a bridesmaid at my aunties wedding – not that she had a choice in the matter, I just “happened” to buy the same dress as her bridesmaids and turn up in it. Though she was happy about it, the only reason I wasn’t officially chosen to be bridesmaid is because I have 5 younger sisters and she was worried that if she asked me she’d have to make them bridesmaids too. Which of course isn’t the case. I was given a massive bottle of Smirnoff for being bridesmaid, and I still haven’t had the heart to tell my auntie that I have been completely sober for well over a year now – not that I was a raving alcoholic before or anything, but now with this Crohn’s lark, it’s best just to not drink at all.

I hate weddings, well no I don’t, I love weddings actually I just hate all of the politics of weddings – the way people feel like they have to invite people whom they detest simply because they share a little bit of the same blood as each other.

I digress…

2014 was most definitely not “my year”. In 2013 I had thought that 2014 would be the year I finally ran that marathon I’ve always dreamed of (or maybe a half marathon, I’m not crazy!). I don’t know why I’ve always wanted to run a marathon, I don’t even run. I don’t even particularly enjoy running but there’s just something about being able to say “I’ve ran a marathon” that is so impressive.

I would have run for JK Rowling’s charity Lumos, partly because it would have given me a really good excuse to write to her (I’m awful I know – I have no shame) but mainly because I think it’s a great organisation. If you haven’t heard of it, their aim is to put an end to children being institutionalised- giving the child the right to a loving family home environment. Everybody runs for cancer, AIDs, Alzheimer’s, dogs and donkeys, and while they are all causes that I have a great respect for and have even been affected by some, I just feel they always get all the attention when there are other organisations that need recognition and support and help which is why I thought of Lumos.

It’s strange because I know I have Crohn’s disease but I don’t know whether I would run for a Crohn’s charity (please don’t go crazy at me!), if I ever got to run a marathon now, since getting the disease. Though I do wish more people would consider running for Crohn’s and Colitis, maybe I will do too, but the lack of people doing so just goes to show how uneducated people are about this disease. I mean I hadn’t even heard of it until I got it, so I’m sure many others out there have never heard of it or even if they have, won’t know how truly terrible this disease is.

Anyway, back to my dreams for 2014 – pre-Crohn’s, I wanted to go to South Africa and volunteer at one of the animal conservation centres there – preferably with rhinos and elephants as I’m very passionate about the whole Ivory trade business (passionate about ending it that is). Currently being on Imuran and having to have regular blood tests I’m unsure if this is a possibility, and even if it was I don’t think mentally I am in the right place to do that just yet, which is disappointing since just over a year ago I would of jetted off in a heart beat. I’ll get there one day.

I had wanted to become independent in 2014. I had wanted to fly the nest and finally have a home of my own. I’d wanted to have my own business, my own car, a dog. Just a proper grown up life. I don’t even know if that will happen this year. Becoming ill knocked my confidence more than anything. I had truly believed I was invincible, at least until I hit 40. No one ever thinks they will get sick while they’re young, they can assume Alzheimer’s will come with old age, arthritis, heart attacks or even cancer, and all that seems fine almost, or comprehendible at least, maybe because it seems so far away. So to be hit with the realisation that no one is invincible let alone me, even at the age of 21, was like being hit with the reality train.

I feel like the day I got sick, not even the day I was diagnosed, my confidence just went straight out the window. I don’t want to see anyone other than the family I live with and my boyfriend, and I’m not very good company even with them. The idea of me bumping into an old friend or even a family member when I go to the shops is so ridiculously terrifying to me that I’ll even try and disguise myself with sunglasses, hats and chunky scarfs or failing that, just outright blank people so I don’t have to converse with them.
I feel like the only thing interested I have to talk about is my illness, but I don’t want to talk about it and feel so uncomfortable with people asking me about it because I hate that I always answer with a lie, “I’m fine, yeah. Feeling loads better now thanks”. I’m not! Alright I’m not the crippled, anorexic mess I was pre-diagnosis, but I am still a mess and I wish I could just say that to whomever happens to ask, whether it be my nan or my next door neighbour without fearing that they’ll think I’m being dramatic, or feeling sorry for myself (which by the way I think all we with Crohn’s have every right to feel sorry for ourselves!).

I don’t want to go anywhere, I’ve lost a lot of friends and any chance of making new ones because the idea of going out with people has become so daunting. I will go to the cinema with my boyfriend and that’s pretty much it. Anywhere else with anyone else leaves me with the stupidest of anxieties leading up to it – What if I become unwell suddenly and want to go home? I’ll feel too rude to say so. What if I plan to go out but when it comes to it I’m so tired that I just can’t? Then I’m a let down and there is nothing I hate more than a let down. I’m not even the sickest person with Crohn’s, I have it fairly lucky compared to most but I still don’t want to be anywhere far from home, where I’ll find my bed, jogging bottoms, a hot water bottle, my Big Bang Theory/Friends box sets and super strong painkillers, when it all kicks off in my gut.

Then when I got diagnosed, it wasn’t even a confidence thing really, I don’t know maybe it still is, but I just felt so disgusting. I have a bowel disease. Me, the girl who will swear on her own life that girls do not fart and they certainly have no use for bowels! I’m not prudish, by all means if you want to share your bowel habits with me go ahead, I won’t even flinch, it does not phase me one bit. Just don’t ask me about mine. I feel terrible saying it, because so many people are in my position or worse and I don’t find them disgusting. Just me being broken, not having a body that works the way it should makes me feel disgusted and disappointed and so angry at myself. I know it’s irrational, there was no way I caused it and no way that I know of that could of prevented it, but it’s my body, it shouldn’t be letting me down like this.

In my ‘five year plan’ I had wanted to ultimately end up living in America, I think I’ve spoke about that before, and it’s been a really tough thing to come to terms with, that I will probably never be able to move there unless I became super rich as I would never get any kind of ‘budget’ health insurance and the cost of treatment would be crippling (I now realise how lucky we are in the UK). Now I’m kind of like – now what? Now what am I working towards? Now what is my dream? Where do I wanna be? Or rather where can I be?

I’ve told you before that I’ve been reading The Secret and cannot recommend it enough. When I went to Florida I became so obsessed with making sure I didn’t become sick on holiday that The Secret went out of the window because I was constantly thinking “don’t be sick, don’t be sick, don’t be sick” so I attracted the negative word – ‘sick’. I wasn’t terribly sick, it didn’t affect my holiday too much other than I was very, very tired and experienced a few new symptoms, but I just haven’t been able to get back to that amazing mindset I had before the holiday, when I felt normal again as though I wasn’t sick and possibly, probably mentally messed up. Now I’m back to square one.

But, that’s going to change (hopefully). I’m about to start an 8 week course which apparently is going to change my life. It’s a course which is meant to motivate people, and encourage them to start making the most of their life. I’m not sure how it’s going to go, it doesn’t start until next week, but hopefully it’s going to give me the kick I’ve needed. Maybe afterwards I can start planning my life properly, and make something of myself (God what a cliche hint to say) instead of being that loser who sits at home watching Friends all day. I don’t want to be the person I am at this moment in time, I’m not proud of it, but this year is going to change that.

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It’s been a while…


Sorry I haven’t posted in a while, in all honesty I’ve not had much to write about. As you all know I had my colonoscopy on 14th February – really romantic, I told you all about how horrible that ordeal was but I’ve not told you my official results and all of that boring stuff, but I’ll get to that in a minute. A month after my colonoscopy I had still not heard anything from my GP, my GI or any consultant/nurse/person that has been a part of my journey. I had expected to have an appointment with my GI within 2 weeks following my colonoscopy so after the 2 week mark had passed I picked up the phone and contacted her secretary who was a waste of time, she told me that she doesn’t know if the results of my biopsies were available yet so she would have to chase that up and get back to me she didn’t get back to me (I eventually received a letter 2 weeks after that for an appointment the following week). I was already annoyed prior to speaking to her as I had been passed around and transferred to at least 5 other people over the phone within the hospital and had been put on hold numerous times. I was impatient, unwell, scared and very angry. Had they just forgotten about me? Could they not be bothered? Am I not deemed sick enough for them to care to at least keep me up to date with how behind they were in getting the results of my colonoscopy back? I was beginning to doubt and despise the NHS and was starting to wonder how much it would actually cost for me to go private so I didn’t have to put up with all of this waiting around. I live in a small town surely the waiting list to be seen by a GI can’t be that long.

During the time between my colonoscopy and my appointment I went from taking 6mg of Entocort steroids to 3mg, that was the worst thing ever! After 3 days of only taking 3mg I grew very ill, I felt like I had returned to day one, the pain, the illness, all of it had crept back up on me. I spent one night feeling like I had the flu except I didn’t have the runny nose, sore throat or sneezes – my whole core was freezing cold but my skin had reached a dangerous 102-104 degrees fahrenheit and my body was weak, so weak that whilst lying in my bed wrapped up in anything that was close enough to keep me warm I couldn’t even find the energy or the strength to shout my mum or dad to come and help me figure out what was going on, so with thanks to 21st century technology I called my mum’s phone and she came up and with a firm palm to my forehead she determined that I was to be stripped off naked, I had to argue to keep my underwear on to save my modesty, she opened my window and pressed a cold cloth to my head whilst forcing water down my neck – in my family we don’t really do A&E unless we really have to and I’m glad, because although my temperature was so high, the last place that would have helped me that night would be a hospital, they would have stabbed me with all sorts of needles and dripped all sorts of fluids into me when all I really needed was my co-codomal and my mothers strict ways when it comes to fevers.

That night was pretty horrible, the fever lasted about 2 hours and for that entire time I just cried to my dad about how I don’t want to be sick for the rest of my life, and how it wasn’t fair that I was sick – what did I do to deserve this? My dad repeatedly told me that I’m not to give up, we’re going to find a way to beat this. I’m crying just writing this because I now know that that was the turning point in my life, I hadn’t realised how much I had given up on myself and how much I had just succumbed to being sick and that was that. A few weeks before I had read about a guy who completely cleansed his body and his mind by practising yoga and meditation everyday, and by turning vegan for a while and gradually allowing animal products back into his diet – he cut out all of his medication despite his doctors telling him not to and he went into remission after only a few months of his cleanse and he now continues to eat healthy and practise yoga and meditation to relieve him of stress and is doing very well health wise. I did yoga myself for about a week and it was great, I felt good in myself and I could go days without taking any painkillers but I slowly got back into the mindset of “what’s the point?” and stopped.

The following morning I called my GP and told her what had happened and she instructed me to go back to taking 6mg of Entocort and since then I have felt relatively normal and wish I could go on taking these pills forever… I should be so lucky.

So yesterday I finally got an appointment with my GI, and I have to say she is probably the worst person in my life right now. I simply do not like her and I’ll tell you why. Yesterday when I walked into her office she asked me how I was feeling I told her I was feeling alright, because I was. I was feeling like I didn’t have Crohn’s anymore, apart from being tired still (which I assume is the anaemia and not the crohn’s so much) I’ve not had pain or discomfort in any manner, I’ve been great. But would she accept that? No. Now it might sound petty, but that annoyed me a lot, you know for the first time in months I’ve felt good, I’ve felt hopeful and I’ve felt normal and she made me feel like that was wrong. Then, I told her about the yoga and I said I’ve felt a lot better since doing it, and the days I do actually do a bit of yoga I feel no pain; she literally laughed in my face and pretty much told me to not be ridiculous. Doing yoga made me feel better and more alive and calmer than I have in months and she totally just belittled me and made me feel like an idiot for believing… No – KNOWING, that yoga was helping me. I’m not an idiot and I wish my GI wasn’t either, these people are supposed to be experts so surely she would know that the biggest aggravator of pain with crohn’s is stress, so surely anything like yoga that relieves stress is going to work wonders on a crohn’s sufferer, right? Well according to her that’s a load of rubbish.

She told me that the results of my biopsies say that my crohn’s is not just in my small bowel like we had originally thought, it is also in my large bowel, though luckily it’s not so bad (yet). That was it that’s all she told me on that matter, she didn’t tell me what that would mean, she didn’t ask me how I felt about this new information, she just brushed past the subject as though she had told me that it was going to rain this weekend. I know I should have asked, but so much is going on in your mind when you’re being given a whole load of new bad news that you just kind forget how to use your brain.

I told her I’ve been suffering badly with my joints, with somedays the pain being almost unbearable, I’ve had swollen toes, red hot knees etc and all she said was “well yeah” like it was wrong of me to mention because well don’t all crohn’s patients have bad joints and bones? So it’s normal and I should just not complain about it. Nothing was done about that, nothing was suggested, I wasn’t told who was best to talk to about those things, so I guess I’ll just have to get in touch with my GP and pester her about it, which I feel is unfair, she’s really great and I wouldn’t know what I’d do without her but IBD isn’t her field so she shouldn’t have to put up with my constant need for advice. She also seemed a bit put out when I asked her if she could add more painkillers to my prescription as though it pained her to write the words “co-codomal 30/500mg x100” on the prescription – and to make it worse she only went and give me a lesser dosage even though she knows full well that I might as well just take nothing if I’m going to take them as they have no effect on me.

She then told me I would be taking a drug called Azathioprine more commonly known as Imuran, she gave me a leaflet which briefly explained the reasons people are given imuran and that it might make you nauseous, but that was about it. She then said “well you can have a look on google and find out about it there” I’d thought this was weird, but I later came to the conclusion that she probably didn’t want to deal with the fuss I’d have made had she been completely honest with me about imuran in the first place. I was scrolling through Facebook once I’d gotten home from the hospital yesterday and stumbled across a post on a Crohn’s Facebook page where someone had asked if Imuran was a chemotherapy drug, to which the answer was yes. Great, chemo. Now I know it’s only a small dosage, I’ve had many close family members who have had cancer, my nan has cancer right now, I’ve had surviving family members and family who have lost their battle with cancer, so I wouldn’t say I was an expert but I would definitely say I’m pretty clued up on cancer and treatments etc.

So what does chemo mean? I could lose my hair and I know I probably won’t go bald but like many other women out there, my hair is my pride and joy, when my hair looks good I feel good, as vain as it sounds I just don’t think I can cope with losing any amount of hair. Chemo makes you unwell, it lowers your immune system so you’re vulnerable to even the mildest common cold. Is that really what we need? Is this really the best drug they can give us, because this drug is doing exactly what chemotherapy for cancer patients does and there is no definite chance of it even working very well.

We’re being asked to take this drug which doubles our chances of developing a cancer called Lymphoma, the information leaflet inside the box lists very common side effects as being:

  • infections
  • nausea and vomiting
  • anorexia
  • reduction of white blood cells

and the common side effects which affect around 1 in 10 patients are:

  • liver disease
  • reduction in blood platelets
  • anaemia
  • inflammation of the pancreas
  • cancers such as – lymphomas, cancer of the cervix, vulva and skin.

Now it says hair loss or alopecia is a side effect in only 1 in 100 people, but from my research and reading of blogs, following Facebook and twitter pages, hair loss seems a lot more common than just 1/100, because pretty much every person I’ve heard of taking this medicine experiences at least some hair loss. I’ve been told that it causes your immune system to become pretty much useless, I’m to avoid anyone with a cold or flu and definitely anyone with viruses such as measles, chickenpox etc as the contraction of any of these diseases could lead to me or indeed anyone else on Imuran to being very unwell and in some cases hospitalised.

My main issue is that I’ve booked a holiday to Florida in September, the first thing I’ve had to look forward to for ages, will I be able to enjoy it like I expect to? Will I get sick from the plane journey? It’s a common occurrence for me to get a cold whenever I travel on a plane because of the air circulation and normally that’s fine with me as it clears up in a day or two of the holiday and in any case it’s just a few sniffles so I can go on and enjoy myself. Will I not be able to sunbathe (not that I tan- I’m a milk bottle, but that’s not the point) without risking skin cancer because I missed a spot when applying sun cream? Will I have to spend every second of my time in the sun covered? There is only one thing in the world that can make me happy when all else is failing and that’s the feeling of the sun on my skin. It truly makes all of my worries go away and makes me just feel healthy and well, both in my body and my mind- will I not have that this summer? Or on my holiday?

If this is going to be the case then I don’t think this is going to be a long term option for me – Crohn’s has already ruined a lot of things in my life, it’s ruined some of my dreams and aspirations and it’s completely changed my faith both religiously and faith in the world and society i.e. the government who I genuinely believe have a cure for all of our illnesses even cancer but probably choose not to make them accessible in order for them to maintain population control (but that’s for another blog), my faith in the NHS because right now they’re not being great, my faith in my country since they just seem to keep on screwing us all over, my town in particular – I live in a small town in the North West of England and it is one of the poorest areas of the UK, statistically. My borough has one of the highest cancer rates in the UK, I think it’s about third on the list, and I have a good idea of why- it’s not just because some of the people in this town are unable to afford a healthy balanced meal and do unfortunately have to rely on cheap alternatives such as processed, frozen and unhealthy foods rather than getting good balanced, organic, healthy meals, but also because this town is so packed with pollution. We’re surrounded by factories, chemical and power plants and we have recently become home to an incinerator which will be burning rubbish from the entire north of the country and all the way from Scotland too, allowing more harmful chemicals and waste to damage the air that we breathe- but what does that matter to those in number 10? There’s no hope for this poverty stricken town anyway so let’s just let them get sick and die because nobody can be bothered of thinking of a greener way to dispose of waste.

And my faith in people in general has just gone out of the window as I’ve realised just how crappy and truly selfish some people can be and I wouldn’t have realised that if this hadn’t of happened to me. So I’m annoyed at that.

Back to my GI and Imuran, she told me I’d have to have weekly blood tests for a while, and for those of you who have read my blogs before you will know that I have a massive, pathetic, embarrassing, irrational phobia of needles. It makes me feel ashamed every time I get a needle and cry, but I know in my mind it’s all silly and there’s nothing to be scared of, so I go and I cry but I do what has to be done and allow the nurse to stab me with that darn needle! So when she told me I pulled a face and was kind of like “arghh no!” with tears threatening to pour out, I agreed and attempted to make a joke out of how much of a wimp I am, to which my GI responded “well you’re a human and I’m a human- we’re exactly the same, so if I can get a blood test and be fine then you can too… you’re just going to have to get used to it.”

I’m not an idiot, I know now that my life is going to be full of needles and bloods tests and all of that icky stuff that I hate, but that doesn’t mean I can’t feel afraid just because somebody else is able to do those things and not feel phased. We may both be humans and our bones may be structured the same, our faces may have the same lay out, our eyes, ears and mouths might all serve the same purpose but that does not mean that we are the same and I hate her for saying that. I hate her for how terrible she made me feel that day, and for how terrible I still feel today after having to learn all about this drug that I’m being told to ingest without being told anything about it by the person who most definitely should have.

I also had gone into that appointment with the intention of pouring my heart out to this woman and ask for her help and guidance, because though I’ve been diagnosed for a few months now, I have only seen a doctor or any medical professional a couple of times, so I’ve not really been given any advice, I’ve had to find it myself through this and Facebook and twitter and books. I believe I could be depressed or at least extremely sad, I think I am still grieving for the life I once had and the one that I could of had and I don’t know how to deal with that, and so I wanted to ask her to refer me to me to a councillor, but then I felt like she doesn’t deserve to get to know me personally in that way and now I know I have to find somebody new but I don’t even know where to start.

 

Wow that was an angry post… can you tell I’m mad?

Thanks for reading as always, feel free to comment/advise/like this or share your own blog with me.

xo

True colours …


So I know it’s hard to understand and feel empathy for someone who has an “invisible illness” like Crohn’s, and I get that completely- I’ve been ignorant myself towards illnesses as such, felt myself get frustrated at a diabetic colleague because “why can’t they just eat less sugar and stop complaining”, turned my nose up at a depressed person because “what have they got to be depressed about? There are kids in Africa starving and dying with AiDs and what not”, but then as I’ve grown up I’ve become more knowledgable and less naive about illnesses that can’t be seen, that aren’t physically obvious; not just since I’ve had Crohn’s, I became very aware of invisible illnesses a while ago both through personal experience and by just having a general interest in biology and psychology. So it can be very hurtful when people don’t even try to understand and frustrating when they can’t understand, for any reason- age, being uneducated about such things, naivety.

I’ve felt that frustration a lot in the past few months and I’m sure many other IBDers have too. For some reason it seems to be the people I’m closest to who say the most hurtful things, and I know they don’t mean to upset me or hurt my feelings at all, it’s not their fault that they don’t understand- they don’t have the disease so how could they? My dad will often pass a comment along the lines of “well if you didn’t eat so much crap before…” My mum tells me how anorexic I look and my boyfriend has said several times that I’m “just making a mountain out of a molehill” and that bothers me, but there’s no point in arguing about the things that are said because what difference would it make? None. Because unless the people closest to me have felt what this feels like and how just generally crappy this is, they are never going to get it, and if I had the choice between having a family that has never experienced IBD and so is never able to understand when I’m at my worst or having a family who has experienced this illness for themselves and can then understand completely, I know exactly what I would choose. There is no way on earth I would ever want any one I love or care about to ever have this illness, not just because of the pain, but because of all the other stuff as well- like feeling disgusting and ugly as your body constantly gains and loses weight, not being able to eat your favourite foods without being keeled over in agony for hours afterwards (I miss peas but they hurt me so much!), or not wanting to plan things quite simply because you don’t know how you will feel that day. I wouldn’t wish this on my worst enemy.

The reason I write this post tonight is because my sister really showed me her true colours tonight. My parents are out so I’m babysitting my 5 younger sisters, the oldest being 12 and the youngest being 6. Every time I babysit them one of my sisters makes a big fuss and to-do about how she is not a kid and she doesn’t need babysitting and I can’t tell her what to do. So when it came to bed time the inevitable happened: “no, I don’t want to go to bed yet… I don’t have to… You’re not my mum!” This then turned into the same old row, however this time there was a twist. My sister likes to point out that I’m never at home, I’m 21 years old of course I’m not, I’m normally at my boyfriends getting some peace and quiet away from my mad house! So tonight she did just this, this is how it went:

Sister: “well you’re never home anyway”

Me: “are you for real, I’ve not been out for ages!” (I’ve not been at my boyfriends much as he’s away training for his new super impressive and clever job)

Sister: “well that’s not my fault”

Me: “it’s not my fault either- I’ve not been well”

Sister: “I know!! How could I forget? It’s all I hear about!”

Me: “I can’t believe you’ve just said that” *storms off to my own room crying and slams the door, knocking everything off my shelf*

Now I don’t know if I’m being dramatic or indeed actually am making a mountain out of a molehill this time, but this actually made me cry my eyes out. Her saying this, as though she was angry at me for being unwell really, really hurt me. It felt like she feels as though I’m being a burden because… well I don’t really know why. Maybe it’s because I’ve understandably (I think) had a bit more attention from our parents lately- spending time with them at hospital/doctors appointments, having them offer help when they wouldn’t have normally before, and maybe because after my colonoscopy my parents bought me a charm for my Pandora bracelet for “being brave”. I know at 12 there is no way she will be able to understand why our parents and other family members are giving me a lot more attention than normal, and she’s not going to understand why I’m pretty miserable and “lazy” most of the time because she’s only 12 and has no idea what this illness is and like I said, I would never want her to be able to fully understand, because the only way she really could would be if she experienced it herself and I would honestly rather lose my right arm than have one of my sisters have Crohn’s disease. I’m just confused, is this how everyone feels around me? Am I now a burden on them too? Should I stop talking about it and try and just get on? I don’t know…

…….

Oh and another crohnie issue I’ve had this week is-

I was running out of steroids and painkillers so I went to my GP and got a repeat prescription. I was under the impression that because I have a chronic illness and will need medication for the rest of my life I would be exempt from prescription charges. It turns out that people with Crohn’s don’t actually receive any help, unlike people who have other lifelong illnesses such as diabetes or thyroid problems. I am so mad about this! As I’ve been out of work since October due to being sick I literally have about £5 in my bank and at £7 an item I just cannot afford to get my medicine, yet without it the Crohn’s will just get worse. Luckily my mum happily paid for me to have a 3 month prepaid prescription plan which is a bit cheaper, but surely there must be some help for us crohnies out there? The only way you can get prescriptions for free in England is if you’re unemployed and claiming all sorts of government help. But I don’t want to be unemployed, I want to make my own living… Once again it’s the decent hardworking people of this country that end up worse off (no offence, please understand that I am only against unemployed people if the only reason they are unemployed is because of their own sheer laziness) .

xo

Still Crohn’s …


So I had the colonoscopy and despite my worries about my prep not being good enough considering I didn’t finish the Moviprep I was given and I overdosed on Senokot, my report said that my bowel prep was good – I felt like I was back in school and I had just been given a good report; I was weirdly quite proud of myself.

First of all I would just like to tell you all to ignore anyone who says a colonoscopy is painless and if you have sedation it is likely that you won’t even remember being there because that is the biggest load of codswallop I’ve ever heard!

My medical records all state that I am an extremely anxious patient who has a severe phobia of needles (though I would like to point out that for the first time ever, I didn’t cry when I had my cannula put in- another proud moment!), so I was given a lot of sedation and two types of strong painkillers- one of which my mum kindly informed me is a pain killer women are given when they are in labour, this didn’t help my nerves!

I strongly believe that neither the sedation nor the pain killers worked at all! Okay, maybe the sedation did slightly as I did feel a lot calmer after it, but I was still fully aware and alert throughout the procedure and I definitely still remember it all, but the pain killers seemed useless however if that’s what a colonoscopy feels like with them I think I’d rather chop my own foot off than go through a colonoscopy without them!!

It was horrible! The pain was excruciating for the most part – the consultant told me I may feel some discomfort as he maneuvers the colonoscope around the bends in my large intestine, discomfort was a major understatement and it sounds stupid but if you’ve had a colonoscopy before you’ll understand- the pain felt like when you have really, really bad trapped wind but multiplied by at least a thousand, and I’m not even exaggerating!

Luckily I had two nurses in the room with me who I could not praise enough, they were really lovely and patient with me and they answered all questions I had regardless of how stupid they were. My own consultant Dr Ram, who has been there since the first day I was in hospital came in to overlook the procedure and see how I was doing- this was very decent of him since he doesn’t have to do that, he could have just waited for the results to be sent to him. He was very supportive and even leant me a hand to hold when I was in a lot of pain, so I had him on my right side and one of the lovely nurses on my left, each holding a hand and putting cool compresses on my forehead as I kept burning up.

They happily described whatever I asked them to as I grew increasingly interested in what I could see on the screen and for the first time in my life I wanted to know every little bit of information I could about my bowel.

In my last post I explained that I still had some hope that they might have made a mistake and there’s every possibility that it’s not Crohn’s, well unfortunately the colonoscopy did it’s job and confirmed that it definitely is Crohn’s. Biopsies were taken both from healthy parts of my bowel and the unhealthy parts, the sensation of that was so bizarre, it felt like there was a big bubble popping inside my stomach. The camera moving made me feel like I was in the film Alien and the baby alien was about to burst from beneath my ribcage as I could see and feel it moving around under my skin.

The colonoscopist discovered ulcers at the end of my large bowel near the beginning of my small bowel and he couldn’t even enter my small bowel because it had shrunk or something. Nobody told me at the time but I know that’ll most probably mean I’ll have to have surgery. I’m not ok with that, not even a little bit. There is no chance I will ever feel brave about surgery regardless of how much it will benefit me.

So now I find myself feeling extremely angry whenever I feel pain on the lower right side of my stomach, I didn’t even know it was possible to hate an organ as much as I hate my bowels right now- is that stupid? I don’t know, I don’t care- I just know my insides are ruining my life and I’m extremely angry about it.

Anyway, now I’m playing the waiting game again, waiting for my other consultant to contact me with an appointment time/date so I can get my “congratulations, it’s Crohn’s” certificate or badge or whatever. So yeah, I’m really looking forward to that…. I’ll also find out what medication I will be taking next and what steps will be taken in order for me to control this, so in other words this is where the (not so) fun starts!

To conclude-

Colonoscopies are probably the worst thing in the world- though I didn’t feel as undignified and embarrassed as I thought I would, this was probably one of the most painful things I’ve ever experienced. It is now early hours of Monday morning, I had the colonoscopy on Friday morning, and my stomach is still very sore and uncomfortable. So it was an all round horrible experience.

I will not be having another colonoscopy in a hurry, I can promise you that right now!

xo