Saturday, 31 December 2016

HAPPY NEW REAR!


It’s time for one of those 'end of year' posts we bloggers love to write (and you dread to read)!

And what a year it's been.

 

HORRIFIC. 

 

I won’t even begin to go into the changes we’ve undergone with Brexit here and Trump over there, because I don’t want to projectile vomit all over the screen.

 

We've played a seemingly endless game of 'Who's Dead Today?' this year with almost everyone in the public-eye quaking in their boots at the mere sniff of a cough that they'll be 'next'. Of course for me the hardest of these 'celebrity' deaths was my beloved David Bowie. I genuinely sobbed when the news hit and felt the same grief I would for a loved one. It seemed so utterly confusing that I would mourn someone I've never met, but the depth of feeling I had for his music (and the shock of his unexpected death through illness) hit me more than I could have expected. I suppose with a sudden and unanticipated death such as his, it hit a lot of his fans in a similarly painful way. So many other deaths followed, that this year switching on the breakfast news each morning seemed like opening the world’s
most depressing advent calendar.

 



The next big setback in my year came when our beloved cat passed away. We knew he was poorly and would in time be heading to that giant Cat Scratcher in the sky, but his death was very sudden and still came as a big and heart-breaking shock. Our beautiful boy was so special and such an intrinsic part of our little family that his loss is still felt around the house. The loss of a pet can be surprisingly heart-breaking: when they are such a huge part of the family it takes a while to adjust to him not being home. 



 

But for me certainly 2016 has not been all bad. And really as we know, it’s all about ME.

 

This year saw me quit my job of over 10 years to take on a new challenge closer to home and allow me more time for writing and working on book 2! Scary but incredibly exhilarating, and definitely the right decision.

 

This leads us on neatly to the next big emotional event in my 2016: The publication of my first book! GO YOUR CROHN WAY came out in May and was a whirlwind of anxiety and joy. It was a surprisingly emotional time for me for many reasons; because it was a reassurance I wasn't a terrible writer, because it was coming from a place where I could hopefully help others in a wider way, and because it was a painful part of my life being transformed into something positive. We had a wonderful book launch (The Crohn Way Soiree) which was one of the best night's of my life. Excluding that time a taxi appeared just as the heel on my stiletto broke. I've had such good feedback from patients and their families alike that's it's made my heart swell. It’s been well received so far, I’ve been on radio, in papers and a local MP has even put forward a motion to have it mentioned in Scottish Parliament! This is about the only level of fame I could tolerate without exploding into a ball of anxiety and feeling the need to wear makeup everyday/brush my mane so I’m pretty happy with that :)



 

I’m currently working on book two and it all seems pretty exciting and that I’ve found where I want to be in life which is incredibly comforting.

 

The year ended for me on a pretty low note as I’ve been advised my treatment is no longer effective and my body is fighting against it (again). So back to the diseased drawing board. I spent most of the lead up to Christmas in hospital and it was extremely disheartening, just the idea of being properly ‘sick’ again. Tests and procedures and hospital food; none of us want it. But I was lucky enough to get home for Christmas. Now just awaiting more of the same, scopes and tests until we know what may work for me where others haven’t. I’m trying my best to think positive about this as I know I’ll get there, just stuck in limbo at the minute.

 

2017 will hopefully be healthier for us all.

 

For me, this year despite many, MANY setbacks, I have achieved something I never thought I would, I’ve made a brave decision or two, I’m in love and loved and HAPPY. Good health will follow, and if not, I’ve got all the love I need to help me through it.

 

Your support, however small or large this year has meant the world to me!

I love you!

Happy New Year everyone! xox

 

Sunday, 11 December 2016

Holy Moly

A few recent conversations with people I love and admire (and who also happen to be religious) got me thinking about faith and living with chronic illness. I should begin by mentioning that I am not religious myself. At all. I was raised Catholic, and I do still hold on to certain elements of my religious upbringing. Such as trying to treat people with kindness, treating those as you'd like to be treated yourself, and valuing and nurturing love. These are all aspects of my character I can attribute to both my wonderful parents and the bleeding into my life of Catholicism. If Jesus will pardon the pun.

But recently I've pondered how different my handling of my disease may have been had I continued down the path of that of a practicing Catholic. Because I don't feel a belief in any 'higher power' or am drawn to any form of organised religion, I wonder what that must feel like in comparison to my current lifestyle of taking each day as it comes. I suppose the element of my religious past I’ve held onto most would be feeling guilty for absolutely everything. This includes eating a delicious and/or expensive meal – I’ll feel guilty about the indulgence and the pain it’ll undoubtedly cause my purse and intestines. That’s fine I guess, a little guilt never hurt anyone and it certainly puts a halt on me doing anything that might actually warrant 25 Hail Mary’s and a Holy Communion afterwards.
I don’t want any of this to sound patronising or disrespectful in any way. I would never question why people I love/abject strangers feel a need or calling towards religion. It’s a choice; just not one I’d choose. In much the same way you wouldn’t question my undying love of Jon Hamm. DO NOT QUESTION MY UNDYING LOVE OF JON HAMM.

I blindly put my ‘faith’ in doctors. I have to. I don’t believe in a specific Higher Power, I don’t have an alternative. That’s my choice, of course. But for me it’s all I have. I’m often secretly envious of those with a strong faith in God/Aloe Vera/whatever. Not because I feel at a loss without something to believe in, but because I wonder how different life must be for those patients who do. Does having a deity of some sort to reach out to make pain and suffering easier to tolerate? I imagine it is a comfort; at least that’s what I’m led to believe from those around me. Any form of comfort with a chronic illness is a blessing. I take my comfort from my loved ones. I ‘believe’ in them, and in their ability to soothe my anxious mind. They are tangible, and real, and around. They forgive my occasional bad behaviour and understand it comes from pain and anxiety, they don’t expect a penance for it, and I return the understanding just as wholly.

With a chronic illness, and especially in talking so openly and publicly about it as I do, patients are often subjected to a seemingly endless ream of ‘miracle’ cures. I have a tendency to pooh-pooh these ‘cures’ in much the same way I do religion. Maybe without even realising how that may appear to those with a strong faith. I’m well aware that rubbing my every orifice with Aloe Vera may not necessarily go and in hand with attending mass. (Although, I’m still stoically of the belief that neither would ‘cure’ me). There is a difference e between a spam email trying to sell me dodgy diet pills and a caring friend/family member offering me comfort by sharing a belief they hold dear. I need to see that more often perhaps, instead of being so overtly dismissive.

I don’t feel I’m missing out on anything because I don’t believe in God, I just don’t ‘get it’. But then  I don’t have to, just like you are totally allowed to believe in whatever the Hell you want too. If Jesus will pardon the pun. Again...


Monday, 21 November 2016

Be There or Be Flare

I was talking to my wonderful Mum today about family, and poor health, and flapper dresses amongst other things. But rather than dedicate my blog to the beauty of a fringed frock, I should probably focus my attentions on the former.
Family and the opinions of my family and friends have always been very important to me. They have been the ones to whom I would turn when I had a huge decision to make, or when I’ve made the wrong decision and need a shoulder to cry on or a cave to retreat into. Of course the older we get the more decisions we must make on our own, often without input (and the harder these become). The love and support of family and friends is generally what gives us the confidence to make these decisions and have the confidence in our own choices.

Some of these choices are hard. Possibly none more so than when we are in poor health and must make decisions that may literally be life or death. When I was advised I should have life-threatening surgery, the consequences of such an undertaking didn’t factor into my decision. Maybe they should have; but if I were to consider I might’ve left my mother without a daughter, I wouldn’t have been able to go under the knife at all.

You see my health affects the people I love. I wish that weren’t true but it is. The same way that any of us being ill affects people who love us; the decisions I make about my health are essentially mine, but will affect the lives of others regardless.

Were I a ‘healthy’ woman, I wouldn’t have to worry a lot of things. I wouldn’t have to worry that I was causing stress and upset to those who love me. I wouldn’t have to worry that I am unable to provide for my little family and that my partner may be forced to pick up the slack. I wouldn’t have to worry that I’m making others unhappy because I can’t do this, that, or the next thing.
I wouldn’t have to worry about living and I could focus on doing just that. But I do, and I have to face that day in day out – as do you. We all make the best of the hand we’ve been dealt and I no longer wallow in the occasional misery of my situation as I once did. I suppose this is just a meandering post really, but at the heart of it it’s a reminder that the people who love us are SO important to our recovery and general health-maintenance. Support and love is a boon to us and although it may often seem we take you for granted, we appreciate you more than you can know.


Often we just have a lot of worry spinning around in our heads and we forget to say thanks for being there. So I think I speak for every ‘sick’ person when I say THANKS FOR BEING THERE xo


Tuesday, 1 November 2016

#HAWMC - Day 1

It’s the first day of this year’s WEGO Health Writing Challenge (#HAWMC)! I wasn’t too keen on taking part this year as I’m working on a new book alongside my full time ‘proper’ job and have been feeling physically lower than a worms bra strap. But I figured it might be a good way to keep the writing momentum going as well as getting some much needed inspiration from my fellow health writers taking part!
So anyways todays writing prompt is as follows: 

Let’s get to know one another! What drives you to write about your health? What do you want other activists to know about your condition and activism?

Well if you are reading this chances are you already know a little bit about me and my writing (HI MUM), but if not then allow me to inform you of what you have SORELY missed. I live with several chronic conditions, the most prevalent being Crohn’s Disease. I was diagnosed with arthritis age 25 then Crohn’s shortly after – since then I’ve developed chronic migraines, nerve damage,  Gilbert syndrome, anaemia, low blood pressure, anxiety etc etc to infinity.

I started blogging about my experiences of life with Crohn’s Disease in 2011 shortly after my first surgery. Since then I’ve been nominated for/been finalist in several blog awards, and have had my first book based loosely on my blog published in May of this year! (it's called Go Your Crohn Way and availability from all good retailers FYI) ;) 

But coming back to the prompt: what I’d ideally like others to take from my writing would be a feeling of comfort, camaraderie and a decent laugh every now and then. I’ve always written in the hope that I can help educate and inform people on how it feels (physically and mentally) to live with incurable illness. I want to remind patients and their families it’s possible to thrive despite a chronic condition and not just ‘survive’. My drive to keep writing comes from hearing and seeing others stories, and just how difficult they find adapting to illness. There is always, ALWAYS someone who needs a little kindness. Incurable illness never ends so I keep writing for myself and for others in the hope some of that kindness rubs off. Pass it on, it feels great! X


Sunday, 25 September 2016

By The Book

I haven’t been blogging as regularly as I might be lately as my writing time is occupied writing another book. I’m really excited about this one and putting much more pressure on myself to make it brilliant and funny and genuine.

The first time round I had nothing to lose in writing a book – I wanted to do it to achieve a dream and to help people come to terms with an IBD diagnosis or just to give long term Crohn’s patients maybe something to smile at. I took my time in approaching any publishers because I genuinely didn’t think anyone would look twice at it, and to be totally honest I was afraid of having to face the knock-backs! But it turns out I didn’t receive any of those and the publisher I went with has been just brilliant to work with.
Getting a book out into the world with no knowledge of the industry, marketing or public speaking is no easy task so I’m proud of myself for all the work I put in to making it happen. Obviously my loved ones played a big part in that too but I’ve already thanked them enough privately to restraining order proportions.

So now I am working on book two and it’s strangely even scarier than the first time. What if no one wants me this time? What if I’m a one hit wonder? What if I hate every word I’ve written? (the 3rd one swims about in my head EVERYTIME I sit down to write).  

But that’s where I am with that: trying to make something readable and enjoyable and HELPFUL and consistently filled with self-doubt. But I guess that just makes me an author. If you’d like to be first to know any book news and aren’t my Mum or lover then you can sign up to my mailing list if you’d like! Click on this helpful link -

http://kathfantastic.weebly.com/go-your-crohn-way.html

I'm also thrilled to have been nominated again this year in the WEGO Health Activist Awards! I'm up for both Hilarious Health Activist and Best in Show: Blog. Thanks to everyone who nominated me! If you want to cast your vote by way of an 'endorsement' you can do so to the right of this post or on my website. Thanks! 

http://kathfantastic.weebly.com/crohnological-order.html

Health wise things aren’t too great at the minute, I’ve been pretty floored with a nasty sinus infection that I can’t seem to shake. My immune system is so low that the minute I start to improve someone just has to sneeze within 20 miles of me and I’m flattened again. My partner isn’t loving having to sleep with Darth Vader, but we all have our crosses to bear. Infliximab is still going well, so far so good, so I’m counting the days to next week when they pump me with more of the good stuff. And also Infliximab.  


But enough about me, how are YOU? 



Wednesday, 21 September 2016

Lazy Crohn's

Please forgive this angry blog in advance but here goes. An issue I cannot grasp is when some people, even after having been told several times of a condition’s INCUREABLITY, (not sure that’s even a real word but if not it should be), still expect you to ‘improve’. Without mentioning any names or places or specific occasions (*DISCLAIMER*) – let me give you a few examples of what I mean by this. Although I’m all too well aware you will likely have your own for reference.

In my case there is often an expectation I will be able to ‘perform better’ (and I’m not talking about within the bedroom here so draw your own conclusions). This is an impossibility as I already carry out every task to the best of my ability. Including piss poor rhyming it would seem. I try with all the patience I can muster, to express just how damaging and frustrating it can be to tell someone with a disability they should ‘try harder’. Mainly because we already are. We are trying harder than you. We have gotten out of bed and are completing the same tasks as you WITH a chronic illness. We are already better than you in so many ways. So why do you make us feel worthless?

When you offhandedly mention that we could try harder, you make us question ourselves. Maybe we are coming off as lazy? Maybe we could make more of an effort? That is a tough situation to put someone in. Not to mention dangerous. How much further should we be pushing ourselves in your opinion? So far we end up in the back of an ambulance? Maybe a morgue? Yes I am being dramatic here I grant you, but when your best isn’t deemed good-enough it’s completely and utterly soul-destroying. ESPECIALLY when this apparent lack of ability is caused by something totally out-with your control.  

When you tell us we should/could try harder, you are basically asking us to ‘improve’ our disability. Perform an impossible feat. This may sound dramatic to those of you without an incurable illness, but the invisibility of a chronic illness like Crohn’s allows for a startling amount of ignorance. Would you ask someone who was paralysed from the waist down to ‘just have a go’ at walking? Didn’t think so. So why then is it deemed acceptable for someone to query why my intestines don’t work as they should?

Let me finish with this: I have a full time job. I work long hours in a stressful environment. My condition(s) mean I struggle with pain mainly in my stomach, legs, arms, and hands, I experience almost weekly migraines, my medication means my head is often fuzzy and I suffer memory loss, extreme fatigue means I struggle to stay awake around 2pm each day and I am constantly and consistently exhausted. Did I mention that I can’t tolerate food and am either on the toilet or throwing up in it? Oh and that along with anemia and low blood pressure means I’m dizzy almost all day long.


I’m not mentioning all of this for sympathy – I know I am lucky as there are people who face much worse every day, but I mention it to reiterate the point. On top of all of that, what exactly would you like me to improve? I’d say I’m doing pretty well just remaining conscious to be honest. 


Monday, 29 August 2016

Rest In PJ's

A very important aspect to bear in mind when living with chronic illness is 'self-care'.
Firstly, I appreciate that may sound hippy-ish, and may inspire someone who doesn't eat kale or drink pumpkin lattes to feel increasingly nauseous, but at the core of it ‘self-care’ really just means looking after number one. 

In the least selfish way possible, it's vital to ensure that when you feel at your worst (and even when you don’t) that you take the time you need to help yourself feel as well as you can. Now of course that doesn't necessarily mean immediately calling your boss and throwing a 4week sick note at him so fast he gets a paper cut. It just means it’s important to remember that there are things you can do to ease the pressure of a day to day life with a chronic illness. For example: REST when you need to rest. It may sound ridiculous but this is often the most difficult for me. It seems to come exceptionally low on my list of priorities. I’ll always have something more pressing to do first. Then I came to the realisation that really that means I’m placing my own health pretty low down the rung on the ladder of life. And really, although a support network around you is imperative, it’s also vital to value yourself and your own body.

I've begun to try and act accordingly now instead of pushing myself to my body's limits and beyond. For example, if I’ve had a busy day and I’m into a new realm of exhaustion, I’ll find 20minutes to take a nap. Previously I would have made a million and one excuses not to: it's almost dinner time, I don't want to be rude and leave my partner alone, my favourite TV show is on, the moon is in Venus, etc, etc. Now I try to act on my body’s demands and feel better for it.


Looking after yourself may not make you feel massively different physically; it may only serve to allow you to feel a little more rested and give your triple AAA’s a well-deserved recharge. But that’s not really the point. I find it has a greater impact on mental health. It allows you to grant yourself permission to ‘be ill’. You don’t have to excuse yourself for something you have no control over, you just have to adapt to it and sometimes let it win a few battles. You still take the gold in the end; you just do it at your own pace. So put down the dish-cloth and pour yourself a delicious glass of bowel prep, you deserve it! 


Friday, 19 August 2016

Stress This House

Not sure if I mentioned it recently, if it all, I mean I have been pretty quiet about the whole thing tbh, but I've written a book on life with Crohn's Disease. With writing a book you, of course, open yourself up to criticism and judgement. That’s wholly understandable; I’m expecting people to take the time to read something I’ve written and maybe even purchase it with some of their, no doubt hard-earned cash, so I am certainly open to hearing opinions on it.

But within writing circles pretension runs rife. I’ve been made to feel that I’m not a ‘real’ writer in several areas; and I’ve gone along with that because I don’t truly feel like one either. Even though I’ve had a book published it still feels as though I’ll be ‘found out’ eventually and I’ll have to admit that yes I’m an idiot who just got lucky, LOLZ sorry!

But my own insecurities aside, and I hate to break it to anyone criticising me, but I’ve written a book on my experience of bowel disease; I’m not trying to be the voice of a generation or pen The Next Great British Novel.

This same feeling of insecurity permeates all aspects of my life when I’m feeling low. I’m not a good enough writer to be taken seriously, I’m not a good enough partner to the man I love and eventually he’ll see it too, I’m not ‘sick enough’ to talk about it with any level of knowledge, etc ETC to infinity.

These feelings all began when I got sick. Because with long-term sickness often comes anxiety and depression. Not for everyone of course, but for more of us than I’d care to wager.

I’ve always been self-deprecating; it’s what helped me avoid being bullied in high school (I had no boobs, a 10y/o boy’s haircut and liked cats more than boys). It’s what got me tips as a waitress and barmaid. It’s what help bagged me a beau. Laughing at myself is probably a safety net – it gets it out of the way before anyone else does. Not that I truly believe they will; but it doesn’t matter what I truly believe, because the minute I think those thoughts they take over. Approximately 4565775675 different scenarios play over in my head then I’m back to square one.

Anxiety and insecurity is a bitch because it doesn’t matter how many people tell you that you are wonderful and worthy and loved; you’re Teflon. It all just glides off you because you don’t feel it. Now let me be clear, (in particular for my Mum because I know she’s reading this hi mum I love you) I do not feel like this all the time. A large chunk of my life I feel self-confident and brave, important, and pleased with my image and my work. I feel deserving of the man I love and the friends and family who love me as I know that I should. But when that is gone and I’m just a ball of anxiety and frustration I can’t see how I ever had the gall to believe in myself.

Look I know this is a ramble and it maybe means nothing to a lot of you, but I’m mainly writing this to the young women who flood my inbox with emails everyday telling me they are scared and feel isolated in living with chronic illness. I want them to know they are not alone, and although it isn’t exactly a pleasant thought that another human being feels as bad as you do, it can also be a small comfort. Knowing you’re not ‘crazy’ and that these feelings will eventually dissipate gives us hope.


Maybe tomorrow I won’t want to weep when I see my reflection, and I will feel strong enough to write another chapter of another book because maybe someone might want to read it. If I can convince myself of that then you can too. Or whatever it is you ‘do’; do it! If writing is your bag then go for it! Just don’t write too well, I’m not good enough to handle the competition ;) 


Wednesday, 17 August 2016

Cordon Loo

You know when you walk into a public toilet? One that other human beings use as well as yourself? And you are met with an aroma that stings the nostrils. An unpleasant odour. The toilet almost smells like…let me see if I can get this right…a TOILET?

With IBD we encounter this more than most. We tend to spend a great deal of time in the toilet. Because of this, we are, and I have thoroughly researched [made up] this fact), 99.9% more attune to smells, cleanliness and hygiene. We are also more accepting of other people’s bodily functions because we are consistently judged on our own.

In my handbag, where most women perhaps carry a phone, purse, tampons and a lipstick, I carry all of the above, but also wet wipes (ONE DAY I WILL BE THE WORLDWIDE FACE OF WET WIPES), a small spray to eliminate potential odours, a lorry-load of medication for every eventuality, spare pants, spare tissues (in case of a lack of loo roll), a sick bag and E45 cream in case excessive-wiping is required.

Bet you’re screwing your face up at the thought of all this. Maybe you’re even imagining me ‘having an accident’ and thinking less of me. That’s ok. It’s your first reaction and you can’t help that. But its learned behaviour. We’ve been taught from birth that going to the toilet and performing the most basic function in order to help us remain alive, is a dirty thing which should be kept hidden; and certainly not openly talked about! Heaven forbid!!

We applaud our children when they learn how to use the toilet for themselves. Mothers excitedly tell other mothers about this exciting milestone after weeks or months of back and forth frustration. But when it comes to discussing matters of the rear that’s where it ends. As soon as we are grown we are designed to be ashamed. Go quietly into the toilet. Sit in stony silence until the other person next to you leaves. Don’t FOR GODS SAKE open your bowels when someone else is within ear-shot.

I encounter this daily. I don’t feel self-conscious anymore, for the most part anyway. I calmly do my business and carry on with my day. It means I can successfully function at work, get on a bus without fear, and stand upright. It doesn’t really matter if a stranger is ‘offended’ by me using the toilet, because I understand it’s their programming. With a little bit of their own self-consciousness thrown in. They WISH they could be as laid back and relaxed to drop their drawers in public as I am.

Some people of course, and many of them YOUNG PEOPLE with or without IBD, cannot use the bathroom in the conventional way and require life-saving procedures which leave them with colostomies on their bodies. You perhaps can’t see this so you judge someone for taking what you consider to be too long in the toilet. You assume.

All I’m trying to say here is try to remember that visiting the bathroom is a normal bodily function that everyone performs. You are not special. You do not expel gold-dust scented of the rarest flower.

Going to the toilet is not ‘disgusting’; it’s essential. You being a tit about it is wholly optional. 


Wednesday, 10 August 2016

Pain Killer

A little thing a lot of people without chronic illness may not understand is that it can be really, really difficult to tell people you are in pain. It may sound like a simple act; a brief discussion with an employer, an off the cuff comment to a loved one, but for me it’s often an impossible task.

Today I am writing this in a LOT of pain.

It’s one of those days that come every so often where everything hurts. My hair hurts. My eyes are constantly on the verge of welling up and my hands are fists primed to punch something/someone/your Dad out of sheer frustration. I wouldn’t though, I’m a lover not a fighter, and my arthritic hands can’t make fists right now so it would be a weak slap at the very least.  Plus I like the gifts your Dad buys me too much to rock the boat.
You see it’s easy to write all of this down, to tell a computer screen that I’m in pain, mainly because I can’t see your face as you read this. I can’t see your eyes roll or glaze over as you desperately try to force your brain to tell them otherwise. I can’t see you bored of me, or see the sympathetic head tilt.

I can’t see you disbelieve me. I can’t see you pity me.

Of course I’m not saying you all do these things, of course you don’t. Most of the faces I see are that of concern. And yes I’m supremely open to the suggestion that it may be my EXTREME anxiety and paranoia causing me to see these things in your visage, but it’s just that I’m pretty much a seasoned pro at spotting these reactions now.

The problem with talking about pain when you’re ‘in’ it, is that it allows room for little else other than feeling it. It can be genuinely difficult to even form a coherent description of it when you are experiencing it. I suppose that’s why doctors have developed these charts; the ‘how many out of 10’ and the ilk, for speed and accuracy in treating us. But those charts don’t apply when you are talking to people outside of the doctor’s surgery.

This morning as I struggled to get some sort of relief from the pain in my legs, my stomach, my head and my ENTIRE USELESS CARCASS, I tried to find ways to communicate this without over dramatizing. I didn’t want to sound ridiculous, like I was trying to skive at work, or bore my friends. But instead I played it down, like I always do, because it’s easier. Easier for me, and easier for them? I don’t know. I just can’t bear the judgement sometimes. It’s so utterly hypocritical of course, as I’m always the one who preaches how important it is to be transparent, open and honest in talking about your illness. But today I cried like I’d been subjected to a double-feature of Terms of Endearment and Les Miserables in the bathroom instead.

I’m not looking for sympathy here by the way, absolutely not, but I’m so continually and persistently anxious that I am already pre-empting your reaction to this. I care what you think of me and I wish I didn’t. The bottom line is (by now I shouldn’t have to tell you, but PUN INTENDED), when we are in pain, it’s all we can do just to tolerate that, let alone try to express how we are feeling. So just try to be patient with us. Make us laugh. Don’t let us see that we are frustrating you if we are. I know that may seem selfish but we honestly won’t have the energy to get into any form of debate with you, from brokering a trade deal between countries to forgetting to take the bin out, it’s all impossible.  Give us a bit of time to feel ‘normal, and don’t make us feel that we should apologise for it. Even though I’m 99.9% sure we will later anyway.


Just be kind to us, it really is that simple. 


Tuesday, 2 August 2016

Stress Who

It’s commonly known that stress is a huge factor in exacerbating chronic illnesses such as Crohn’s Disease. It also almost nigh on impossible to avoid. Everyone deals with their own stresses in day to day life, be it struggling with finances, feeling harassed at work, relationship troubles or just not being able to catch that last Pok√©mon. We all have our own issues and we all deal with them in different ways, so there is sadly no quick fix.
One of my main stressors, (and I hadn’t realised it was such a thing until recently) is being around negative people. This is a stress for me, mainly in my day to day ‘real’ job where the environment can be borderline toxic with reams upon reams of people competing to outdo one another in the misery Olympics. Of course being perma-sick like me can also cloud your judgement on these people, as you feel you have a unique outlook on their particular ‘problems’ – mainly that they need to realise how lucky they are not to live with an illness every day. But that’s just a biased and marginally unhealthy attitude and one I sometimes struggle to keep under wraps.
I’ve tried various methods in dealing with these people from straight up ignoring them to trying to play amateur therapist and everything in between. For the most part, nothing works, because the hard truth is; some people love to complain. They LOVE it. They relish finding misery in the minutiae of daily life then amplifying it for all to hear. But because I know being around these people makes me genuinely unwell, and I have no option but to be around them, I try to do certain things to make sure I’m protected. I can’t heal the world and make it a better place, but I can try to shield myself from some of the bile spewed into my airspace. So here are a few things I try to remember when I feel myself being drawn in:
1.  Don’t Become the Person you despise
By that I mean, don’t spend your evenings complaining to your significant other/friends/cat about said person(s) you find so unbearably negative. Although it can certainly be cathartic to vent your frustrations, all you are doing is perpetuating the misery and continuing a vicious cycle of gloom. Plus, you don’t want to be the one talked about in the same vein do you?
2.  Focus on what you can control
So here I’m referring to your mental state. Don’t allow someone else’s perpetually bad attitude to alter your own. Don’t be disheartened either when you find your amiable attitude doesn’t rub off on others, you haven’t failed, you’re not Mary Poppins, just focus on what you think and feel about certain situations and don’t get tangled up in bad feeling.
3.  Change the record
Sounds an easy task to just change the subject, but it's can be a challenge when someone is in the midst of a rant about this that and the next thing. Tempting someone away from the dark side of every situation can be hard but rather than indulging them it's often more effective to subtly change topic. It's easier than confronting them endlessly on their bad attitude, and they have nowhere to go with a rant when the recipient shows zero interest.
4. Act don't react
If this negative person happens to be a friend of yours, it can be tempting to try and solve their problem in the first instance. It’s of course always the right thing to display a degree of compassion for someone you care for/anyone who seems to be in a harmful spiral, but remember to avoid falling into their habits yourself. If you see a common type of behaviour of theirs approaching then perhaps try and pre-emptively ease it, before they slip into the same depressive slump.
5. Put Your Health First

There may come a time, regardless of your persistent efforts to help, when you should consider what you are getting out of a certain friendship and how much of it is draining vital life force from every fibre of your being. If a relationship revolves around one party’s negativity you’ll find yourself a verbal punch-bag, that’s when it might be time to cut ties where possible, or at the very least put some distance between you both. Health and particularly mental health is IMPORTANT and being made miserable and stressed regularly is a strain we just do not need. 

Sunday, 17 July 2016

Saved By The Bowel

I was walking my dog today, he had a bit of a poorly tummy (bit of a running theme in our house) and he unfortunately threw up on the way home. This was on the path on the way into my street and just happened without warning. He was sick, I petted him and after he was done he trotted away quite happily and carried on with his day. However the look he got from a woman across the street stayed with me for the rest of mine.

She looked utterly disgusted. She shook her head and looked at me as if I’d just stripped naked and danced the cha-cha in church. I HAD just done that but she didn’t wasn’t there and that’s beside the point. The point is, she looked as though he had been wrong to be ill in public. In her eye-line.  As if I should have somehow stopped him.

Now I know he’s a dog and you’re probably thinking what does this have to do with IBD, but it was a moment that made me feel the same way I’ve felt many times in living with chronic illness. Embarrassed, ashamed, and ANGRY. You see these ‘moments’ happen a LOT in living with health problems. Here are a few from my (never ending list) of embarrassing moments since I got sick for reference:

-          Stripped down to my bra and pants for an MRI and walked into the room only to be reminded it was for my head only so I didn’t need to take anything off.

-          Threw up on a bus full of people into my BF's hoodie then stuck my face into it in some vain attempt to hide, in the process covering my face in my own vomit.

-          Passed out as soon as a needle hit my arm then threw up all over myself.

-          When my arthritic knee gave way when I was crossing a main road and I had to direct traffic around me. 

-          The time the tube containing my latest stool sample rolled out of my bag in a hospital waiting room under the chair of an old woman.

I could go on for another 56645451354854 examples but I don’t want you to get dumped/ fall asleep/ burn your toast /whatever, on my account. My point is that having a chronic illness often causes ‘embarrassing’ moments. Moments you’ll undoubtedly laugh at later, but in the moment you’ll want the ground to swallow you up.

The main issue I have though is that other people tend to make these moments embarrassing; they judge. They look at you with pity, or confusion or even disgust. They think your illness should be dealt with behind the safety of a hospital-ward curtain, where your sickness doesn’t have to offend their eyes. They have a rule book of ‘done things’ and you throwing up in the street/ on a bus/ on them isn’t one of them.  

But what do they think we are thinking? Well we mainly feel ashamed because they are staring at us like we’ve just arrived from the Planet Zod, we feel vulnerable because they are looking at us with disgust, and while we are trying to focus on simply putting one foot in front of the other we suddenly find ourselves in the position of trying to consider YOUR feelings. Those of an abject stranger. Then we get ANGRY because IT HAS NOTHING TO DO WITH YOU.

The point I’m trying to make is that people with a chronic illness can’t always hide away for fear of offending you. We shouldn’t ever have to. Bodily functions and ‘accidents’ happen to everyone, some more than others perhaps, but that’s our problem not yours. How much of a tit do you have to be to take offence to someone else’s misfortune? A triple-G-cup-sized tit that’s how much.


So when someone is vulnerable and you don’t know the full story, if you can help, then you should do that instead of look on in horror like you’ve just seen your own reflection in a puddle. Also maybe be more mature than that last sentence, and try to bear in mind that when things happen we maybe can’t help it. Having an invisible illness can be hard for so many reasons, please try not to make it harder for us just because it’s visible to you. 


Saturday, 25 June 2016

Grimace and Bear It

A little thing you may or may not know about me: I’ve got a very defensive personality. I snap easily when I feel I’m being threatened. The arms cross, the brow furrows and the attitude of a moody teenager positively reeks from me. I hate it. I try to stop it, because I know it’s counter-productive and halts any attempt at adult discussion, but it’s sometimes almost impossible to rein in. It doesn’t always happen. But more often than I’d like it does, and I beat myself up about it A LOT.
I’m also insecure about my body – I’m scarred and bruised from surgery and seemingly endless procedures, and medication means my weight fluctuates so regularly that I can go from balloon to pancake and back again in a matter of minutes. When I’m bloated I feel embarrassed and ugly. I feel ashamed of my appearance. (So you see how the defensive personality might cause a problem here; if someone so much as glances at my stomach I am on them faster than Nutella on toast).
I’m well aware this defensiveness and my occasional hatred of my own female form is nowhere near a good attitude to have, but at least it’s real, and honest. I’d love to be a shining example of woman-hood who could wholeheartedly embrace her curves and teach others to do the same: and I like to think I do on the second point certainly; I’m my friends’ biggest cheer-leaders when they doubt their own (unmistakable to me) beauty. Only I can’t embrace my ‘curves’ because (my cracking rack aside) mines aren’t natural. They are caused by a crippling illness. The difference between these two pictures for example is 10 minutes. The first was pre-meal, the second minutes after dinner.

Bloating is painful and very uncomfortable. It’s constricting and makes me incredibly self-conscious. Even around the man I love. I don’t like to see myself looking this way mainly because it never seems to be a true reflection of me; even though it quite literally IS a reflection of me. 
In much the same way my scar did when it was fresh and new, it makes me feel ‘diseased’. I know it’s the not fit for purpose parts of my insides that are causing my physical appearance to be altered and it reminds me of what I’m dealing with. I can’t hide under smocks all my life, I have to grimace and bear it.  
This week I’ve struggled with work as my joint pain has escalated. My arthritis is causing my hands and knees to swell and ache. The pain can be overwhelming and incredibly frustrating. I suffer from nerve damage too, (another fun side effect from chronic illness) and that too has been reminding me there is pain to be found everywhere if I look hard enough. Thanks carcass! Joint and nerve pain make me feel old and I’m not. Combined with Crohn’s bloating I feel like a beached whale that can’t so much open a jar at the minute. Although whales don’t have pose-able thumbs and no call for opening jars I suppose, so one nil to me there I guess.
I’d love to be more accepting of what my disease does to my body but I can’t. I won’t. My body is MINE. So why does it feel parts of it are being controlled by some outside force trying to halt the inevitable process of Jon Hamm falling in love with me?
Of course ALL women bloat. You do. You DO; don’t lie Janet no one believes you. You just put gorgeous filters on your Instagram pictures or stand coquettishly behind vases of flowers/your fatter friend so we don’t notice. That’s fine, whatever works for you; just remember when we don’t admit our bodies are flawed (whatever that means) we alienate our own kind. We tell our daughters and sisters and mothers that their bodies are something to be hidden. So WHAT if you stomach swells after a meal? Would you leave your husband if /WHEN his does the same? No, exactly. 
Letting my body dictate how I view myself is stopping me enjoying the short time I have to do everything I can with it to make myself and other people happy. Sometimes we all just need to power through the self-consciousness. There are several things I’d like to see written on my gravestone when the time comes and ‘DIED ALONE DUE TO BLOAT SELF-PITY, SURVIVED/EATEN BY HER 45814845 CATS’ is not one of them.*

*some potential alternatives:
‘DIED TRYING TO OPEN A JUMBO NUTELLA JAR’

‘DIED AFTER BEING ATTACKED MY A GANG OF KILLER WHALES EXACTING REVENGE FOR A BADLY RECEIVED 2016 BLOG POST’       

Monday, 30 May 2016

Someone Saved my Life Tonight

How many of you have flippantly said “I could’ve DIED!”? 
Or “I wanted to DIE!”? 
Or even “I’d rather kill myself!”? 

A LOT of you I’d wager.

Ok, now how many of you want to die? 
How many of you have considered killing yourself? 

Substantially less, yes? 

Most of you are probably thinking ‘WOW this got dark really quickly and I want out’ and have already moved on to reading a think-piece on Kylie Jenner’s new lip-gloss. That’s fine. It IS heavy. It’s literally life and/or death.

A few months ago I was low. Deeply in a state of depression which I couldn’t shake. It seemed to last forever: it didn’t. It maybe lasted a month or so. It culminated in me walking home from work, crossing over a bridge and having a fleeting thought about jumping off. I didn’t. I went home and thought about why I thought jumping off a bridge would be in any way a fix or a ‘normal’ thought to have. I was sad, SO SAD, and angry. My partner talked to me. He asked what was wrong, he PUSHED. I was, I am, fine. 

I eventually came out the other side and now I feel balanced and ‘OK’. I even feel happy. That’s fantastic and I am relishing it. But I know I will feel that low again. And again. That’s what depression does – it comes in spells; some last longer than others, some come and go as quickly as a selfish lover, some sadly don’t ever end; they just plateau.

In my short(ish) life, I’ve known someone who killed themself. It’s confusing and distressing and SO sad. They are young! They have their whole lives ahead of them! Repeat to fade. I’ve known people who have tried and failed; either through it not being a ‘genuine’ attempt (attention seeking?) or through poor planning, or just through not being able to follow it through.
There are countless reasons why someone would choose to end their own life. You don’t have to think it’s a ‘worthy’ one; your opinion doesn’t matter to someone who wants to die. You may call them ‘selfish’; but that’s because you don’t want to be left on earth without them. You don’t want to miss them and cry for them. You don’t want to be left without answers, or without having been the one to ‘save’ them.

I say this because I’ve felt it all. I’ve felt anger and frustration and deep unyielding sadness at someone I love not feeling ‘well’ enough to stick around. Feeling that death is a viable option. My fleeting ‘let’s jump off a bridge’ idea is wholly laughable to me now. Only because now I am mentally ‘better’ I can’t imagine wanting to end my existence through choice. I want to live and laugh and love and buy wall decals that say ‘LIVE LAUGH LOVE’. I want to kiss the man I adore until we are old and his beard goes grey. I want to smother my dog and cats with love until they beg for mercy. (Full disclosure: I do that already).


I guess I’m trying to say we shouldn’t judge someone based on our own fears and insecurities. We should learn to take mental-health seriously and listen when someone tries to open up to us. Don’t get angry and shout when someone tells you they are unhappy; they might not have a ‘reason’ they might just feel sad. It’s YOU that wants a reason for unhappiness so you can fix it. But depression doesn’t work that way. It just ‘is’. 

So you can say “I’d rather die!” if you want, I do when I come across an article about Kylie Jenner’s lip-gloss; just remember that when someone says it to you in earnest, take them seriously. I can do better at that. We can all do better. You might just save someone’s life.