Stuff That Makes Me Smile (AKA things that don’t make me want to bang my head against a solid brick wall)

Why hello there internet!  Fellow young ones, writers, crohnic illness sufferers, casual bloggers and adventure seekers.

If you follow me or have read any of my previous posts you will know that I am a big fan of the good old-fashioned whinge up.   I have a talent for it, passed on from my Mother before me.   I know how to moan, I excel at it.   And when you’re good at something, well, we all like to share our interests.

And my blog, which originated as a place for me to write about writing has evolved over the past year into my discussing, in more and more detail, about the struggle I have with my chronic illness.  I wouldn’t say this in itself is a bad thing, I believe in the power of sharing and I know that support from other people can make you feel less alone and more empowered.  Especially when you’re going through various drugs and surgeries in an attempt to stay even remotely healthy.

However, that topic matter isn’t particularly cheerful, because even when I’m joking about it, it’s still not the happiest of subjects.

So I wanted to take five minutes out of my day, to list things that make me happy.  And I don’t mean the big things like my husband, family, friends or holiday trips.  I’m talking about the little, day to day things that just bring a smile to my otherwise grumpy-cat face.   This was a really fun exercise and I recommend giving it a go, you come up with some weird stuff.


  • Brightly coloured post-it notes.
  • Funky illustrated notebooks, (like the ones that have pictures of random women with pink hair on them on the front cover, or illustrations of dogs and owls just because.)
  • Plain papered notebooks.  They are so satisfying to write in.
  • Dogs in jackets.
  • Photo albums and all scrap book related stuff.
  • Photo frames.
  • Tickets from ages ago that I forgot I had and suddenly it’s 2007 and I’m queuing for my first ever gig.
  • Tuna salad sandwiches.
  • Cheese and tomato sandwiches.
  • Chicken salad sandwiches.
  • I’m just gonna go ahead and say ALL SANDWICHES.  (Except the weird lasagne sandwich that the local co-op tried selling once, I mean, what is that?)
  • People with crazy coloured hair.
  •  People buying me cookies randomly because they know I love cookies.
  • Also, cookies.
  • Sleeping in a new duvet cover.  The best feeling.
  • Getting shampoo with the matching conditioner. ❤
  • Getting shampoo with the matching conditioner AND body wash.  Unfgh, so good.
  • The first cup of tea of the day.
  • Take away cups keeping my hands warm in winter.
  • Listening to a song I haven’t heard in ages and remembering all the words like a damn pro.
  • Bookmarks.
  • Hot water bottles!
  • TV box sets of retro 90s shows.
  • The smell of old books.
  • Learning really obscure new facts that serve no purpose to my life, e.g. if a female ferret doesn’t have sex for a year she will DIE.
  • The smell of wood polish.

AND SO MANY MORE.  There are so many things that make me happy!  So sometimes when you’re feeling low , stop and think about all the weird shit that makes you smile and hopefully that will stop you from lobbing your faulty fuckin’ laptop out the window. 🙂

Best Wishes,






So, on January 22nd I was supposed to have my surgery.  I was given eleven days notice.

Now don’t get me wrong I have known about the impending surgery since October last year but I wasn’t given an official date until eleven days before I was having it done.  The surgery itself is an extended right hemicolectomy with an ilesotomy fitted.  Which is a fancy pants way of saying they’re going to remove just over half of my large colon and fit me with a bag.

So I worked myself up, prepared what I would need to take, let my family and friends know, took the time off work and embraced myself for a few months of boredom, pain and financial frugality.

I was booked in for last minute iron infusions and B12 injections, although I was told that they would probably kick in after the surgery not in time for.  I panicked a little but moved on.

I went to the appointment with the stoma nurse and was marked for where my stoma would go.  Had a very minor emotional breakdown in her office and then moved on.

I was nervous about the surgery, I was scared about all the adjustments I would have to make and very aware about how different my body would look and be like afterwards.


But then my ridiculous immune system decided it had to go and get a cold, so the anaesthetist cancelled my surgery because she feared the potential complications from it.

I would like to preface the following by saying that yes I understand that this was the smart thing to do, yes I would rather the surgery be performed under the safest conditions possible and yes I suppose it is better that all the infusions and injections  have time to work…however:


Now I have to go through all the build up and nerves all over again in two weeks time.  I have not yet been given an official date and waiting on another one is so frustrating.

I am so fatigued and tired.  I am incapable of doing even half the stuff I want to do due to my illness and when I finally do have this surgery I am going to be almost completely out of action for 2-3 months.

I am at a standstill.  My life feels like it’s on hold and my own body can’t do something as simple as NOT GET A SODDING COLD FOR ONE WHOLE MONTH.


But I know that this is just one more hurdle before I cross the finish line.  And I WILL cross the finish line. And I will do so looking oh so incredibly smug and waving a banner that says “SUCK IT CROHNS YOU ABSOLUTE DICK.”

Then I will live my life like a champ.  I will write things and work and have a family AND DO ALL THE THINGS I WANT TO DO just with lots of hospital appointments, drugs and surgeries.

You know, like a damn champ.

I understand that this was a very rant-like rambling post but I just needed to vent my frustrations. Plus I am sure there are many more beautiful souls out there experiencing  similar thing so this post is here to also let you know you are not alone.


Peace to you all interweb,

Rachel xxx

Why hello 2018


I’m not going to lie, but 2017 was one of the best and worst years of my life.

I started a new job, went to Budapest with one of my best friends and had a crackin’ Disneyland Hen Do with some of the amazing women in my life.  I wrote things, surrounded myself with incredible people and took a fuckload of photos.  Oh and I got frickin’ married!  To a man who continues to make me laugh and surprise me.

That was all pretty darn incredible.

But my health deteriorated over the year, after three different courses of immunosuppressant’s, two different rounds of steroids and several invasive tests it was then decided that I would need surgery after all.   And contrary to what you might think…I was relieved.   That may sound strange, and don’t get me wrong I am scared, but I’m excited at the idea of more freedom, less pain and hopefully more energy.

This year has been physically draining, mentally challenging and downright messy.   But through it all I had the love and support of the people in my life who matter.

With that in mind, I’m looking forward to this year.   Big things are on the horizon, not just for me but for those around me.   Everyone in my life is growing and changing and that’s exciting.

2018 is the year that I will have surgery.  It’s the year that my husband and I are going to move and maybe, just maybe start a family.   I’m going to keep writing my novels and studying for my degree, and with hard work and a splash of luck hopefully I’ll do well.

It’s going to be difficult and challenging and worth it.

And to all those reading this, for 2018 I wish you all good health and a tasty slice of happiness. I hope you take risks, discover new things and spend it with some truly wonderful people.

So hello 2018, it’s good to see you.

Rachel xxxx


A Good Old Fashioned Write-Off

So it’s that time of year again.

Get your writing hands at the ready and start typing!

Oh boy do I love to hate and hate to love NaNoWriMo 2017.   Every year it forces me to do something.

Last year I wrote just under fifty thousand words of a novel I really enjoyed writing and have spent the past year expanding and failing to edit properly.  So this NaNoWriMo I had a choice to make.   Edit last year’s NaNo and push for perfection with a goal to send off to agents, OR write something brand spanking new.

I chose to dive into a new project.   Not because I don’t want to edit my previous novel (I do, I REALLLYYYY do I just mega-suck at it.)  But also because NaNoWriMo is an opportunity every year to force myself to write.   To get the creative juices flowing and carve something out of nothing.

I have a lot going on at the moment, with liquid diets and surgery in the pipeline, so it’s kind of nice to dive in and immerse myself into something new without the added pressure of trying to perfect it.  After all, isn’t that what writing is all about?  Escapism and magic and about writing a story away from yourself?   Granted, NaNoWriMo is a challenging, frustrating and almost painful month but every year it’s worth it.

Plus, who doesn’t like a good word goal challenge?  My aim is to beat last year’s word count.  A healthy competition between me, myself and I.

Besides, I’ve made a deal to edit last year’s NaNo once this one is done and dusted.   Seems fair, right?

So here it goes my fellow NaNoWriMo-ers!  I’m four days late to starting but tonight I kicked out 1,650 words and I’m feeling good.

See you on the other side!

Best wishes interweb,

Rachel xx





Snip, Snip, Bitch.

So, it’s happening.

It’s not official yet but, it looks like it’s happening.

I guess I should probably explain what “it” is.   So, for the past two years I have been in what they call “active” crohns disease.   I have over 40cm of my stomach affected by the disease in four different places, the largest place is 20cm of my small bowel.   I have been on four different types of immunosuppressant medication, with little to no success.  Earlier this month my doctor said, and I quote; “I’m running out of toys to throw at you.”   Meaning, he has officially run out of drugs to give me.  He suggested that I go to London for a “second opinion.”

So on Monday that’s exactly what we did.

Now, I’m currently on a drug called Vedolizimab, like most immunosuppressant drugs the idea is that it lowers your immune system enough so that your immune system stops attacking itself and gives your body time to heal.   According to my Doctor most people experience an improvement in their symptoms within the first four weeks, I have been on it for sixteen and no such luck.   The London Doctor told me that some people do experience improvement as late as 24 weeks.  So he wants to keep me on the Vedo for the next 8-10 weeks in the vain hope that it might finally do something.  Though he admitted it is probably unlikely.

In the meantime he is starting me on a liquid diet, to try and boost my energy and give my body a rest.  The diet will last 8 – 12 weeks.   Another reason he’s putting me on the liquid diet is to prepare my body for surgery.

Because that is most likely what’s going to happen.   An appointment is being made for a surgical consult and dietician.  We all know how this story is most likely to end.

The title makes sense now, right?  Snip, snip, bitch.

For so long I put off the idea of surgery.  I wanted to exhaust all medicinal options first.  But now, I’m tired dude.   I have no energy, my ability to do almost anything has been compromised.  I actually want to start work again eventually, you know?  I’d like to eat a meal without my body rejecting it twenty minutes later.  I don’t want every day to start with me spending over an hour in the toilet.  I’d also really enjoy a break from all the stomach pain and queasiness.     I want to feel like me again, I want to get some of my confidence back because,  gosh darn it, crohns has chipped a whole lot of that away.

So yeah, if they want to reach inside me and pull out the part of my small bowel that is giving me the most grief, I say be my guest.  Cut the fucker out, burn it dammit!  Heck, get creative, attach the bastard to some fireworks and light the sky up something special.

I’m not gonna miss that bitch.

Surgery scares me a little, I’m not going to lie.   But it has been explained to me, I’m unlikely to be getting a bag from the surgery and if I do it will most likely be temporary.  Sure, I’ll have a nice scar as a souvenir but I can always tell people it’s from where I rugby tackled a shark or got into a scrap with Paris Hilton’s left high heeled shoe or something equally ridiculous.

What scares me most about having surgery is the whole going to sleep and waking up hours later element.  I mean WHAT HAPPENS WHILE I’M  UNDER DAMMIT?  WHAT IF SOMEONE DRAWS A FAKE MOUSTACHE ON ME?  OR WORSE, A DOCTOR ACCIDENTALLY DROPS THEIR WATCH INSIDE ME?  I’ve seen Greys Anatomy man, I know what happens.

But it’s gotta be done.  I can’t keep going like this, I’m running on empty and I don’t like it.   And as long as I’m in active disease it affects other areas of my health too; anaemia, osteoporosis, fuckin’ fertility.

Oh that’s right, it affects my ability to breed too.

They say that they’re better at preventing Crohns from coming back with drugs than  they are getting rid of what’s already there.  So, that’s positive.

Crohns is a disease without a cure, but they’re always coming up with new meds to help manage it.  I’ve just been unlucky in that respect.

It feels like for the past two years my life has been in stasis and I’m hoping that surgery will change that.  I know that Crohns often returns next to the place that it was previously removed but I’m hoping that the Doctor’s magical cocktail of drugs will keep it at bay for as long as possible.  And hey, who knows, maybe when it returns they’ll have some new wonderdrug to get rid of it.  Or, dare I say it, a cure?

But I can’t ponder on that right now.  What I’ve got to do is focus on what’s in front of me now.  And that is three months of no food and a purely liquid diet.

I wish I could sound more enthusiastic about it.

But…imagine the excitement when I have my first bite of a burger after three months of no food?

Fuckin’ orgasmic.

Anyway, that’s all from me interweb!

Best wishes,











Have you ever a experienced a moment of such happiness that it almost overwhelms you and you feel sad?

I had a moment like that on my honeymoon.  We were in our hotel room overlooking the beach and the magical private garden that we had.    I’m standing there with my husband and thinking just how perfect the moment is when the happiness temporarily consumed me.

Then I briefly panicked because I thought how could my life ever possibly get better than the minute I was currently living in?  And if it’s not getting better, does that not mean it will definitely get worse?

Oh the joys of being an anxious, neurotic one woman freak show.

Anyway, the rest of our honeymoon passed in absolute bliss but then we arrived home where I had an entirely new thing to direct all my scary anxious energy at.


No, seriously, who am I?  Right now I’m still legally Rachel Caroline Deacons.  But soon I’m going to post my new passport form with my new name alongside 75 pound so that the cash-grabbing arseholes at Her Majesty’s Revenue and Customs can CHANGE MY NAME.

And boy did I deliberate about what to change my name to.   For a long time I wanted to keep my surname as it is because for a long time it’s been me.  People have referred to me by surname, it’s aligned me with my mum and connected me to my childhood, the idea of trading it in for another name almost felt like a betrayal of my own identity.

But then the idea of having the same name as my partner and forming a new family with him grew on me, like a fungus, it was not all so black and white anymore.

Really what I desperately wanted to do was hyphenate my name.  Best of both worlds right?  The feminist in me would be appeased yet I would still kind of be following tradition, perfect right?  RIGHT? Wrong.  Because Deacons-Matthews is a RIDICULOUS surname, that no one would ever be bothered to say in full.

It’s a tough choice, amirite?  #firstworlddilemma

So I have come up with this almighty equally ridiculous compromise to keep my surname as a middle name and take Matthews as my only surname.

It’s all kinds of brilliant, crazy, stupid right?

Anywho,  the past two years have been insane for me.  I somehow managed to get myself a lifelong chronic illness AND a husband.  Ironically, both of these things now define me and will change me as a person.  But let’s focus on the positive one out of those two.  I am now a wife and as much as it’s scary as all dang hell, this will define me for the rest of my life.  I will now be known as “Shane’s wife”, just as he will be referred to as “Rachel’s husband.”   I am part of a gruesome twosome and many of my decisions will be based around this partnership.

I know, that essentially I am the same person regardless of what my name is.  But how people view me from now on will be different, and as I move into the next phase of my life maybe how I view myself will change.

So, who am I?   Well I guess I’m still figuring it out, aren’t we all always figuring out who we are?  But I’m pretty sure I’m fabulous regardless.

And so are you all my fellow peeps on the internet!

Have a lovely evening interweb,

Rachel xxx

Nala’s Tale

Okay so I recognise that this blog has not been the chirpiest of places to visit of late.

So here’s the story of how we got our dog Nala.

And I warn you now, it’s frickin’ heartwarming.

(Or at least I think so.)

So, in 2015 we lost our dog Izzy and the flat felt so empty without her that we decided to get another dog.

We discussed it at length, whether it would be too soon, whether it would feel like we were replacing Izzy but I think that we both knew after having lived with a dog, we could not now live without one.

So we kept a look out on the Pets 4 Homes website and after a few weeks we saw an add for Yorkshire Terrier puppies in Southampton.  We contacted the breeder and arranged to go up that weekend.

On Saturday we made the hour and half trip down, I had a blanket on my lap that smelt of home.  We were both nervous, I think.

So we arrived at the address and we were let into their kitchen.  There was a baby gate dividing the kitchen from the living room but we could see into the garden from where we stood.  And there were children playing in front of the TV amongst what I can only describe as an explosion of toys.

The couple offered us tea, which we politely declined, and then we were told that there was only one puppy left.   Shane and I looked at each other apprehensively and that was when we saw her.

She was this small, scruffy thing with big beautiful brown eyes and a tiny tuft of white on her chest.  I picked her up and held her and she licked my face and I knew that there was no way we were leaving without her.

Now, this is where things got a little…odd.

“She sat in some poo which we had to cut off, so she’s got a little bald patch.”

It struck me as a strange but in that second I was too busy falling in love with the little ball of fur in my arms.

Shane, who by every definition is the more level-headed of the two of us actually had the sense to ask some questions, I was practically half way out the door with the dog in tow at this point.

“Can we see the parents?”  Shane asked.

To this they pointed to the French doors where, sure enough, there was a Yorkshire Terrier waiting to be let back in.  They told us that the dad was elsewhere in the garden and that they would let them back in to show us but they didn’t want the dogs to be there when we took her.  This seemed more than reasonable to me.

I passed the little pup to Shane and he asked them how often he bred the dogs.  They said twice a year, once in summer and once in winter.  We then asked a couple more questions; what had they been feeding the puppies, had the puppies been wormed and everything yet.  They said yes.  (Spoiler alert, this was a LIE.)

I then went into a long rambling tangent about how much I loved dogs and how excited I was to be taking the puppy home, to which they then said that if we wanted another one that they were due another set of puppies in six weeks.

Again this struck me as strange as they had just told us they only bred their dogs twice a year but Shane and I were eager to take our new pack member home.  So we paid them the four hundred pound, said our goodbyes and hopped in the car to begin the hour and half drive home.

Now, I honestly expected a little bit of a scene from our new puppy.  I expected her to whine at leaving her home, or to cry because we were strangers.  But she seemed so happy, she sat on my lap and was trying to lick me and play with me almost the entire journey home and then she eventually fell asleep on me.  (Not before peeing on me first.)

This was when I noticed the bald patch that the woman had mentioned.   Except it clearly hadn’t been cut, it was thin and there were yellow scabs around the area.   Long story short, our new, adorable puppy had mange.   We took her to the vets the very next day and we were given a special cream to apply to her every day and a special shampoo that we were to wash her in every other day.   This cost us about two hundred pound, when I tried contacting the breeders they denied all knowledge of it and then stopped responding to my messages.

Now it sounds like I’m moaning but the moment that I held Nala I knew she was coming home with us.  The minute she arrived in our flat she fit.  And it sounds stupid but I honestly believe that she wanted to go home with us.

She was the happiest, sweetest puppy and she is now the happiest, sweetest dog and I am so grateful that we decided to make that journey to Southampton.  She is the Queen of this flat and she completes our little family.

That night we brought her home and we tried to put her to sleep in her own bed but she wasn’t having any of it.  So she crawled into bed with us and has done ever since.

In conclusion, my dog Nala is magic.

Best wishes interweb,

Rachel xxx













A Finished Product?

Weddings push families apart as much as they bring them together.

I know this because, I recently got married! And honestly, it was an amazing day.  I was so nervous and scared in the build up to my wedding.  I was worried about my health (please see previous posts) and I was more than a little concerned regarding the behaviour of my family.  Namely, my mother and father.

I’m not going to bore everyone with the details of my parents’ very volatile split.  As it’s a long, complicated story that could easily fill a novel the size of War and Peace.  I’ll leave it at this; they split when I was ten and have only shared a room that was not a courtroom once in that time since.

Between my Dad, my Mum, their respective other halves, the various demands they all had for the big day and the amount of arguments that occurred in the week leading up to the wedding, I was 110% certain that at least one of them was going to kick off.

To my unending happiness, it all went very smoothly.  My mother and father did not speak to each other.  Not even once.  (I’m not kidding, I don’t think they even made eye contact with one another at any point.)  There was one skirmish toward the very end of the evening at the reception. There were also a couple of awkward encounters but, all things considered, when you put 100 plus something people in one large room with a bar and unlimited alcohol there’s a good chance someone’s gonna get nutty with somebody.

All of this aside.  Our wedding was amazing and I was completely taken aback by the sheer amount of raw emotion I felt during our vows as I made this huge commitment to the man that I love in front of our close family and friends.  It was overwhelming to be surrounded by all the people we love in one place and sharing the day with each other and each of them.

It was a perfect day.

But yeah, weddings bring people together just not without some friction first.  It’s stressful and complicated, but for me it was undoubtedly worth it.  (I can say that now that it’s done.  Two weeks ago I was physically tearing my hair out.)

And now I’m married.  I’ve taken on this new identity, I have stepped into a new role and I’m still coming to terms with it.  As a feminist I struggle with the idea of shedding my own name completely, yet I also want to acknowledge the marriage itself and what it signifies; a new family that my husband and I get to create together.  So I’m toying with either hyphenating my name or keeping my surname but as a middle name instead.  This is a decision that will be officially made when I fill out my new passport application and place it in the big scary red letterbox.

The word “wife” still tastes strange on my tongue.

And I think I know why.

It all sounds so adult, so “grown up.”  Like I’m this put-together person that has a direction and knows what she is doing with her life.  I’m a MARRIED FRICKIN’ LADY yet I struggle every damn day to find a matching pair of socks.

Now that the wedding has happened, this stress has been lifted from my shoulders and I’m looking to the future and finding new things to worry about.  My infusions and my crohns and my health being top of my list, closely followed by; when shall we move, when shall we start a family, how easy will it be to start a family, am I ever going to be successful as a writer, what path am I going down career-wise and when will the list of never-ending improvements and goals ever be completed?

When will I be the finished product?

And I have come to this startling, terrifying conclusion.

There is no such thing as the finished product.  Adults are, simply, very tall children.  Each of us fumbling about in the dark, pretending that we know what we’re doing, scared shitless that we’re getting it all wrong but ploughing ahead anyway because, hey, what’s the worst that can happen?

As people we are constantly growing, constantly moving and constantly dreaming new dreams.   We will never be “finished” because as soon as we complete one goal or task another one will almost certainly take it’s place.  We can’t ever just be still, because that would be boring.

So I’m adjusting.  I’m adjusting to being a wife and what that means to me.  Chances are that by the time I have got used to that some new change will come barrelling into my life and I’ll just have to get used to that too.

I will never be finished because there’s simply so much that I want to do and be.  As a slightly neurotic and perpetually anxious person with a long term chronic condition, I can’t express just how much that well and truly scares me.  But you know what?  It’s thrilling and exciting and magical too.

As people we are never finished, and that’s okay.

In fact, it’s better than okay – it’s frickin’ awesome.

And on that note I leave you.

G’night and best wishes interweb.

Rachel xx





The Recovery Project

26th August 2017

I’m not going to lie, I’m a steaming hot mess right now.

It’s been a tough few months.   I haven’t been writing much, and I’ve been feeling guilty about that.  I have been calling in sick to work a lot, and I’ve been feeling guilty about that.  I have not been leaving the flat much and well… you get the idea.

What I have learnt is that the path to remission is not easy.   It is, however, easy to be hard on yourself.

I have crohns disease, it’s difficult, painful and gross and inconvenient in every possible way.

The thing is around Christmas time I was pretty confident that I was on the right track for my meds.  I was on a drug called Adalimumab (Humira) and thought I would be on my way to remission.

Fast forward past the horrid allergic reaction, skip the months of emotional distress and my latest MRI reveals that no the Crohns is not improving, it has in fact spread.

Not fun.  So not fun.

So now I’m on monthly infusions of a drug called Vedolizimab, daily tablets of Azathioprine and Rabeprazole, and a two month treatment of steroids known as prednisolone.


(There I am, looking fabulous and ravising attached to my Vedo infusion. I actually use the same room each time but when I joked about decorating it with Fall Out Boy posters the Ward Sister looked at me as though I asked to sacrifice a lamb.  Ah well. )

And I have decided to take a break.  It’s been a difficult decision for me, and again I feel guilty.  Guilty for being that person who doesn’t push through and just get on with life, guilty for knowing that even with this time off I may not get better, and guilty for leaning so heavily on the people around me.

But it’s time to face facts, through the two years of having this illness I have tried to juggle my never-ending list of symptoms with going to work and organising all my various doctors appointments, tests and different drug trials, alongside trying to actually live my life (ie. plan my wedding, see my friends, not become a weird hermit-like creature that eats their own hair.) .

I am now on the most expensive drug the NHS has to offer and if this doesn’t work I’ll be looking at one other experimental drug and then, maybe, surgery.

I really, really don’t want surgery.

I’ve tried working through it, now it’s time for a different tact.

I am taking a few months off work to simply let all these drugs pump through my system.  Come December the hope is that my next lot of scans will show some improvement.

So I’m dubbing this “The Recovery Project.” (As it sounds a lot more proactive than taking time off sick and seeing what happens.)

Two years sounds like a long time to get used to living with an illness.  But Crohns is unpredictable and symptoms are far more varied than a simple stomach ache.  Before having Crohns, I was healthy.  I never had health issues until suddenly I did, twenty-two years of health and then almost over night I had to get used to a whole knew way of living.  I’m still learning what I can and can’t do.  And the medication I’m on scares the crap out of me, they come with symptoms and side effects all of their own.

So this is me, trying to put my health first.  Both physical and mental.  This is me raising up my hands and saying I need a break, and trying my damned hardest not to feel guilty or weak for doing so.  I’m going to spend the next few months resting while my medication does the real work.

And I’m going to write, so maybe that’s one less thing to feel guilty about.

To all you fellow IBD warriors out there, you’re not alone.   You might feel weak for not being able to live how you think you should…but there are other ways to be strong.  Strength is sometimes simply being able to put life on hold and admit that you need help.

Here’s to the Recovery Project!

My best wishes to all of you…

Rachel xx











Online Diary NO.4 -My Invisible Monster

Sometimes you need to give yourself a break.  And sometimes that is incredibly hard to do.

This post is going to be brutally honest about my illness.   Or, as I’m now calling it, my invisible monster.

I have crohns disease.  If you have journeyed to my blog before you will see I have touched upon it’s effects.

I’m not touching on it now, I’m waging full out war.

Before Christmas I had a flare, it was bad.  I won’t bore you with the details, paramedics were called and they decided to switch me to a dandy little medication called Humira.

Four injections and within three days I could eat again, within a month my horrific stomach pains had all but melted away and my joint pain was no more.  I thought it was a miracle and yet something was… off.

I was anxious, teary and emotional, at first I put it down to the stress of being made redundant and wedding planning.

Then while on holiday with a friend in Budapest, I noticed it.  I was in the shower, getting ready for a night out in the city when I ran a hand through my hair and watched as strands of it pulled away.

I shrugged it off.  It was cold in Budapest and I thought maybe it had something to do with the weather.  I proceeded to ignore it.

A few days later we arrived home, tired from our trip, I bade goodbye to my friend and went home to my flat where my fiancé greeted me.  That night I got into the shower and watched in horror as not just strands of my hair fell out onto the shower room floor but actual clumps.    The water around my feet wasn’t going down the drain and eventually I realised it was because my hair had clogged it.

I hopped out the shower as quick as I could, running to my other half.

“I’m not imagining  this am I?”  I asked, pointing to the shower floor.  “This isn’t normal?”

Shane said nothing – he didn’t have to.

I let out a bark of laughter.  “My hair is falling out.  I’m actually losing my fucking hair.” 

Suddenly all I wanted to do was clean the shower, never before had I been so keen to bleach the fuck out of it. “I’ve got to get rid of it.” But Shane hugged me, held me tight and whispered.  “Rach, go sit down, I’ll do it.”

I sat on our bed and I waited as he cleaned the shower.   That night I cried and then I hated myself for it.  I had never thought of myself as particularly vain but the prospect of going bald, of adding yet just one more symptom to the long list of unattractive things I had to deal with felt almost too much.

Over the next few days brushing my hair became a nightmare, and all across the flat you would find my hair in the oddest of places.  It clung to our bed sheets and pillows and big balls of it would come out of the washing machine.

Then, I came out in full body rashes, raised and red and hot and itchy, all over my stomach, back, arm and legs.

Crohns was horrible, the Humira was almost as bad.

And so the invisible monster had trumped me again, I was frog-marched down to the consultants where I was promptly told that I was allergic to the drug and that I was being put back onto Azathioprine.  Infliximab was too risky what with my reaction to the humira being so quick.

“However, if you do end up in hospital, as a last resort which would you rather be put on, infliximab or vedolizumab?”

I looked at the doctor, trying to determine whether or not he was joking.  Trying to decide whether or not now was an appropriate time to scream.

“Which one am I less likely to have a reaction to?”  I asked, calmly.

“You’re likely to have better luck with the vedolizumab.” He said.

Was this even a question?  “Then that one.” I said.

He typed something on his computer, presumably recording my choice.  Yet another colonoscopy was scheduled and we left.

My hair is still falling out two months later, though I think it might be slowing down.  I’m beginning to lose weight again, not rapidly but just enough that I’ve noticed.  I’m still itchy, though I’ve been reassured that when the Humira completely leaves my system that will most likely stop.

In the meantime I’m taking my Azathioprine (and trying to keep an eye on any potential side effects that may eventually give me.)  And I’m taking my iron supplements, and my b12 tablets and my biotin and I’m still going for my weekly blood tests to make sure that my liver levels are good because, apparently, Azathioprine can damage you there.

I’m writing this post because I have just cleaned my shower again and I have just brushed my hair and I’ve watched as clumps of it has landed in the sink and I feel…done.

I’m tired of being constantly tired.  I’m tired of feeling ill and when I’m not feeling ill wondering when I will be- because undoubtedly it will happen.

I’m tired of the stomach pain, the joint pain, the nausea, the constant trips to the loo, the skin rashes, the mouth ulcers, the weight loss, the constant never ending anxiety.

I’m tired of taking drugs that harm me as much as they heal me.

I’m twenty-three and I’m losing my hair.  On valentines day just past I was in hospital, with a camera in my colon watching in a drug fuelled haze as the doctor took biopsies from inside my stomach – breathing in the happy gas which, truth be told, didn’t make me all that frickin happy.

I’m tired of always talking about my illness.

But more than anything I am terrified.   Almost two years of this illness and the road to recovery is slow and painful.  I’m scared of being deadweight on the people I love.   I panic that my soon to be husband has bitten off more than he can chew.   I am no longer the happy-go-lucky, healthy girl that he fell in love with, but this weak, blithering thing that is always monitoring herself, and constantly on the phone with the doctors.

I’m scared for the future, and what the invisible monster will bring.

When you’re young and envisioning your future, you don’t picture this.  You don’t imagine hospital gowns and injections and the man you love sitting in the waiting room with the boxing magazines you bought him.

You don’t imagine a scenario where your mum calls you every day to check on your symptoms.

I am surrounded by people who love and support me, yet in my lowest moments I feel completely alone, utterly frustrated and angry.

I don’t feel in control.  And that is terrifying.  The invisible monster is waging a battle inside my body and the little bastard is winning.

Sometimes we need a break.  I need a break from the battle, a little respite so that I can win the war.  I have spent the entire day in bed, watching Mr Selfridge and feeling pretty darn sorry for myself.  I’m not going to lie, I’ve been wallowing.  I’ve been wallowing for a while now.

Because there are times where the world is this shining, glimmering place, and I am all too aware of just how darn lucky I am.

And then there are times where it feels as though some almighty being is deliberately pulling at my strings just to see how long it will take me to snap.

I want to say I’m done feeling sorry for myself.  That I’m done being pathetic.  But like everyone I have my ups and downs and I make no promises to not have days where I commit myself to curling up in a duvet and turning the bedroom into a batcave.

I have a lot to look forward too and being scared is natural.  All I can do is fight the good fight.

Because although there is no cure for crohns (not yet anyway – fingers crossed) I do still believe that all monsters can be defeated.  Even invisible ones.

So today I’m going to lay in bed a little longer and wait for my partner to come home.  I’m going to curl up in bed next to the man who has seen me at my worst and yet still cleaned up my hair from the drain.

And tomorrow, I’m going to get up and brandish my sword because this war is not yet over.

To all my fellow fighters out there, don’t feel guilty about not always being strong.  We all need to let ourselves be weak sometimes.  Smiling is not always the best armour and making jokes may not be the best defence.  Let yourself feel what you feel and don’t be afraid to admit that you’re not okay.

Because one day, maybe not today or tomorrow, you will be.