Showing posts with label #depression. Show all posts
Showing posts with label #depression. Show all posts

Saturday, 8 July 2017

Hello, I Love You

In the early days of our relationship, when my BF and I used to argue (and we used to argue a LOT), I’d often fall down. Flat out flop unconscious. I’d pass out and he’d have to rouse me. It was in equal parts humiliating and frustrating. I didn’t want to do it – it was out of my control, it was like my body would literally shut down at the first sign of stress. This didn’t happen all the time of course, just occasionally, and he’d naturally be panicked, worried (and confused). Perhaps suspicious even; that I was somehow doing it on purpose; faking it.

I wasn’t. But I entirely understand why he might think I was. It was ‘convenient’ – a distraction from the heat of an argument. Only I’d black out, so the argument was 500miles from my mind when I came round.
The funny thing about all of this is I’m so stubborn and defensive during arguments, that fainting in the midst of it is the absolute last thing I’d want to do. As I’m sure you can appreciate, it’s hard to win an argument when you are unconscious.

Nowadays I’m older and (hopefully) wiser, and I try my utmost to discuss rather than destroy when talking with the man I love. I try not to take things personally or immaturely assume that one cross word is going to be the end of us. I try not to ‘win’ in a game where we should be equals. Thank-fully I also no longer faint when we do get into a disagreement.  

This fainting was a direct and physical reaction to stress. My body couldn’t cope with the extremes and would quite literally shut down. I didn’t know I had Crohn’s Disease back then; I just knew the way my body was reacting was far from normal.
But, as all insecure women are inclined to do, I just lost myself in my own head and logically assumed I was insane. Thank-fully I’m not insane, (diagnosis pending I’m sure) but unfortunately I do have a chronic illness. Knowing that stress is such a massive source of my physical symptoms has allowed me to attempt to manage it. Of course that’s much easier said than done.

But in amongst this assortment of symptoms and barrage of knowledge about an ever changing condition where does the other half of me fit in? The man who has to watch as I collapse in front of him, when I throw up after he’s cooked for me, when I writhe in pain in bed next to him? I feel a great deal of guilt in being ‘sick’ and in love with him. I’m too selfish to leave him of course – can you IMAGINE how often I’d collapse if I saw him with another woman?

He doesn’t want me to leave him of course, which is a great relief to both me and our mortgage provider. 

But due to one of our twosome being in a state of permanent illness, he is the one who has to see the person he loves in pain. He is the one who feels helpless and frustrated for me. He is the one who has to spend nights alone when I retire to bed ill yet again. He is the one.

I love him. And I love all the partners of women and men with chronic illness for their unyielding patience and compassion. It must be hard to maintain your own personality when everyone around you asks “How is she/he?” before “How are you?” It must be stifling when huge chunks of your conversations are about someone else. So it’s important we remind the people we love they are appreciated. It might be hard for us to tell you that when we are consumed by pain or our own misfortune, but we feel it. Patients become selfish because we are thinking about illness 99% of our day – we are sad and exasperated and don’t want to feel the way we do. But we are in there waiting for you to pull us out of the doldrums, and remind us we are still more than an illness.

We owe you the same courtesy; so please know that we appreciate you and everything you do, and often everything you don’t do; every time you don’t roll your eyes when we complain for the 50th time in an hour, when you don’t have a tantrum when we cancel a night out, when you don’t show your frustration when you’ve cooked for us and we can’t eat it.


We see it all. We see you, and we love you. 


Thursday, 2 March 2017

Nerve Agent


I’ve always been shy.

It took me a good few weeks to stop weeping for my Mum aged 5 starting school. I would go beetroot-faced when asked a question in front of the class aged 10, and I’d laugh nervously like a borderline lunatic when a boy so much as looked at me, aged 15.

 

Most of that has dissipated these days, thankfully. Although I do still cling onto my Mum’s foot every time she attempts to leave my house, but like the majority of us, I’m a work in progress.

 

Those childhood nerves and inhibitions may have subsided gradually as I’ve aged and been opened up to more experiences and seen a little more of the world, but they seem to have been replaced with something almost even more intrusive;

 

Anxiety.

 

This wasn’t something I was bothered by to a massive degree ‘pre-Crohn’s’. But it’s something I now often struggle to get a handle on. Unlike my Mothers’ ankle. It certainly wasn’t something I’d have considered to be an ‘issue’ either until I realised it was impacting my own life.

 

There is a big difference from saying you are an ‘anxious person’ to actually trying to make a dent in coping with it.

My anxiety manifests itself in many ways:

 

  • I’ll overthink anything and everything.
  • I’ll work myself up into a frenzy about the ‘what if’s’ of any given situation.
  • I’ll put off doing things through nerves.
  • I’ll stare at the phone until it stops ringing.
  • I’ll talk and babble too much to fill what I’ve decided is an ‘awkward’ silence.

 

Anxiety is a common issue with those of us with chronic illness because we spend a lot of our time thinking about ‘it’. We have a lot of factors to… factor in to our life alongside the normal day to day activities that we all undertake. Whether the issue is with mobility, pain, bathroom worries or mental health issues; we all have our own fears and apprehensions surrounding our illness.

 

Of course getting stuck in our own heads is often dangerous and isolating, so step one in overcoming the worst of this is really in talking about our worries. When we do this we often find they are sorely unfounded and based on nothing more than our overactive imaginations. Not always, but often. When we decide how someone is feeling/thinking about us, we also insult them, and eliminate the chance of them proving us wrong. We push people away through using our own fears as a barrier. Look, I don’t have the answers on how to cope with this, I just want to share with you that you’re not alone in feeling like an insane person from time to time!

 

What works for me may not work for you, but talking is really important. Don’t be afraid to admit you are scared and nervous and that its overwhelming you. It so much more common than you think. People who love you and/or doctors can help to give you clarity on your feelings. Stop beating yourself up for something that is simply a factor of an ongoing illness. It’s not shameful to admit you are mentally struggling; quite the opposite in fact.

 

So the next time someone from Accounts doesn’t say ‘hi’ back to you in the morning at work, maybe don’t spend all day wondering what horrific atrocity you’ve committed against them and accept that maybe they just didn’t hear you.

 

That is the case isn’t it Linda? You just didn’t hear me? LINDA…?!?




Friday, 24 February 2017

Diseasey Peasy


I receive quite a lot of messages and emails from young people who have recently been diagnosed with IBD. It makes me happy and sad in equal measure; happy that they reaching out to talk to someone about their worries (albeit a decidedly unqualified person like me), and sad because they are struggling with something incredibly distressing on top of all the usual, more common yet challenging aspects of ‘growing up’. Some of them are just looking for reassurance and advice on how best to live with a chronic illness; some of them don’t want to live at all. 

 

I do of course reply to these messages, as quickly as I can and with as much information as I can, but I often feel at a loss as to what to say to soothe a young man or woman who’s experiences perhaps mirror my own fears from several years earlier. I try to think about what I wanted to hear when I was diagnosed: what might have made the whole thing a little less scary, and I hit a frustrating brick wall.

 

I was lucky myself in the sense that I was (officially) diagnosed when I was in my mid-twenties. I certainly didn’t feel lucky of course; I was heartbroken, confused and devastated. I imagine it feels that way irrespective of your age mind you, we all have different tolerances and being told you are never getting better stings regardless of what stage in your life you are at.

 

So I suppose what I’m clumsily trying to express is that I feel at a loss at times to help those who are experiencing what I have. What I am.

 

Then I try to take a breath and remember that all I wanted to hear when I was first sick was that life would go on. I still do. Don’t get me wrong – I undoubtedly would not have thanked anyone for spouting that at me at the time of my diagnosis; I didn’t want life to go on if I’d have to carry this disease with me for the remainder of it. I didn’t believe it and I couldn’t accept it. But as I’ve grown alongside my illness (I’m now in my mid-thirties), I’ve found my outlook has changed along with my priorities. All I care about now is my own happiness and that of those around me. My illness is still a huge part of my life and always will be, one that can consume me from time to time, but those moments pass. Chronic illness is a slippery path whereby sometimes we wobble a little, sometimes we can’t get on an even keel, but nevertheless we never lie down to it; we don’t have that luxury.

 

But the truth is, our life does go on. We are incredibly lucky in that sense. We will have to make adaptions to those lives to make room for this illness, we don’t like that but it’s easier than trying to bat it away like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its basic existence. Denial is fruitless and prolongs the period of time it takes to come to terms with having an incurable illness.

 

Don’t get me wrong here though, I’m not implying ANY of this is easy; sometimes I even have a little cry myself when I feel low – I often feel I’m back to square one with this and the frustration of that can be overwhelming. But if I’ve learnt anything since I was diagnosed it’s the importance of talking. Talk to your parents, your friends, your nurse, talk to me! Don’t push yourself into it – there’s no shame in that either; the last thing I wanted to do at first was talk about this with anyone, but eventually that changed and it became more of a comfort and camaraderie than a fear.

 

So please remember that you are not alone.

 

Things will get easier and you will learn to live with this. Like every challenge in life it feels monumental at first, but the more steps you take towards dealing with it the easier it becomes. I’m not in any way saying I love having a bowel disease – I hate it – but it has also taught me boundless things about my own body, its shown me a strength I never thought I could find and its brought me closer to the people I love. It’s made me value my own life, and allowed me an opportunity to help me help you to value yours.

 

So if you take anything from my ramblings let it be this: disease is hard and scary and intimidating, but your life is worth the challenge.



Sunday, 22 May 2016

The Crohn Way Soirée

On Friday we held a launch event for my book ‘Go Your Crohn Way’. It was AMAZING. Being an inexperienced ‘author’, I’d never even attended a book launch let alone held one for myself, so it was a very daunting prospect! Thank-fully I have an amazing partner who took the reins on the majority of organising the event; he also acted as the host with the most; welcoming everyone along, introducing the night’s activities and even holding a Q&A session with me! VERY FUN.


We held the launch in The Royal Society of Edinburgh, a beautiful building within jaw-dropping distance of Edinburgh Castle. The RSE was created in 1783 by Royal Charter for “the advancement of learning and useful knowledge” and has a strong medical background. It’s also IMPRESSIVE AF. I certainly don’t profess to be learned enough to ‘teach’ anyone anything (although I can name AT LEAST 10 breeds of cat in under a minute), but I do hope my book offers some useful knowledge on how to live a full (and happy) life with IBD.


The launch allowed for me to talk a little about the basics of Crohn’s Disease and Ulcerative Colitis, and read a little from my book. That was SCARY. My knees were a-knockin’ and I was breaking into a cold sweat but I got to the end of it without passing out and no one left mid-way through so that was a bonus! James (my BF) and I had a Q&A where I fielded brilliant questions from our guests. Many of which almost had me sobbing but I was running on too much adrenalin to even coax out a tear at that point. We had delicious canapés and wine and social networking, and a book-signing! THAT was a thrill in itself – people actually queuing up to have me sign their books like a real life author! I loved every minute; especially meeting some who had come such a long way to attend the event.

There was such a great and inclusive atmosphere in the room that we couldn't fail to feel comfortable. Bowels have never felt so entertaining.

Today, a couple of days later, and now that we have both come down from our ‘successful-event-high’, I feel overwhelmed. I've cried more than once today. Not because I'm unhappy, absolutely not, but because I feel so incredibly thankful. Mainly for the people in my life who have supported me from day one in pursuing my dream of getting this book out into the world. I'm thankful for my partner James who I adore a little more every day. But most of all I'm thankful for those people trusting in me, buying my book and enjoying it, and TALKING ABOUT IBD. I hope you all enjoy my writing, I hope it sits nicely in your bathroom and most of all I hope it helps to open up conversation about IBD! Which really is the whole point. One of the best days of my life has also given me an incredible opportunity to share my story with the world. I hope it helps you tell yours; even if it’s just to the doctor.





Thursday, 12 May 2016

Book Up A Storm

I've neglected the blog a wee bit lately. Sorry about that. But with good reason! 
I’ve been so busy with book promotion, (how weird is THAT sentence?!), my real life full time job and stuff at home in my personal life that I feel like I've barely stopped to catch my breath let alone pen a blog post.

So here's what's happening. My first (and hopefully not last) book on living with Crohn’s Disease ‘Go Your Crohn Way’ came out 5th May!  

Since my first book was published it's been an incredibly exciting time in my life, a genuine whirlwind and I've cried a LOT of happy tears. 
The outpouring of love I have received since the book was published has been overwhelming and completely unexpected!  Not that I think my friends and family are monsters who wouldn’t support me; but because I have been totally single-minded in focusing on doing the work (of which there is a LOT) to get it out into the world. I hadn’t stopped to think that other people would particularly care, or be in any way affected by something I had written. But at the end of the day I WANT people to be affected by the book: isn’t that the whole point? To raise awareness of an unspoken condition, to help give an understanding of life with chronic illness, and to help those suffering feel they are not alone and capable of living an AMAZING life? YESSSSSSS.                  
I had no idea having a book published would all be such an emotional experience! It’s not just my friends and family who have showered me with praise and encouragement, its people I’ve ‘met’ online, on Twitter and Facebook and through my blog. People I know well and people I don’t. How wonderful is that?
I suppose the subject matter of the book and the fact that it’s so personal has emphasised how people who love me are reacting to it. It feels to me a very cathartic experience; I’ve also found myself in a privileged position of putting something out into the world that may help people feel less afraid, isolated and alone. I wrote this book because it’s something I would have loved when I was diagnosed. I wanted to know that I’d have a life beyond my illness – something I didn’t think possible when i was being pummelled into insignificance with descriptions of my unsightly bowel and medical terms I didn’t understand.
I cannot describe how exciting it is seeing you all with your copies of MY book. When my partner saw his name on the inside cover (it’s dedicated to him, my parents and wet wipes) it was so incredible I wished that I could see his face could stay that way forever.  It’s all such a surreal experience and one I never thought would actually come to fruition. Every day is a treat and I don’t care that the hype will inevitably die down because my book will be in people bathrooms for years to come and I LOVE that fact.
I truly hope you enjoy it. And if all else fails, it’ll make the most luxurious toilet paper. 

Saturday, 12 March 2016

Go Your Crohn Way

I’ve been having a bit of an existential crisis lately. Not to the point that I’m so much as questioning everything in my life, but more why I have I set myself up for failure. I’m launching a book in a few weeks; I’m throwing a launch party and have been posting the link to said book all over social media in a bid to drum up interest. I’ve told EVERYONE – including the bin-man and local window cleaner. I’m both excited and absolutely terrified in equal measures. I say ‘failure’ because one of the great qualities of my personality is my ability to jump straight to the pinnacle of anxiety by assuming the Worst Case Scenario wherever possible.

I don’t always feel this abject terror. It often comes then leaves just as quickly; much like a selfish lover.

But I do feel it today. I feel a panic of “WHAT ARE YOU DOING!?” / “WHO WILL READ THIS?!” / “WHY DO YOU THINK YOU ARE SUCH AN EXPERT?!” – all valid questions I grant you. Because these queries buzz about my head like doubting Thomases’ around … Jesus? IDK I appreciate I’ve gone off-piste here, but what I’m trying to say is that it makes it harder to focus on why I am doing what I am doing.

I have spent over a year of my spare time writing a book about my experiences in living with Crohn’s Disease because I want to show the wider world that there is life beyond chronic illness. When I was diagnosed I was utterly terrified of what the future held for me; or even if there was a future. I didn’t want to live in constant pain and I didn’t want to be ‘different’. The truth was of course, I always had been. I just didn’t know it. I started my blog to help myself – it was a marvellous and magical coincidence that it helped others – so now I write to help people like you.

I don’t profess to be an ‘expert’ on all things IBD – I don’t have an encyclopaedic medical knowledge and I don’t know what some things/symptoms/medications feel like because I haven’t done/experienced everything. Neither have you.

But I do know how it feels to live with a chronic and debilitating illness. I know how it can and does affect every aspect of your life and I know some ways to make life feel a little bit better. Many of those ‘ways’ involve medication strong enough to flatten an elephant but again I’m not a Doctor here so please seek medical advice before popping pills galore. Primarily talking about your condition helps - especially with people who love you – or/and with people who understand what you are going through.

But haud the bus here, I’m, not giving up all my tips and tricks away gratis! – my publisher would have my (remaining) guts for garters.
So I am probably contractually obliged to say that you can sign up to email alerts for my book Go Your Crohn Way here:


And/or pre-order it from Amazon here:


So while I certainly struggle with the idea of actual real life humans reading my ramblings I hope you know that I write for you and for me; life is tough and I want to make it less tough for you if I can. That’s why with every copy of my book will be a voucher for enough drugs to flatten an elephant.


KIDDING, MUM. 


Monday, 22 February 2016

Blue Ruin

I’ve made a lot of bad decisions in life; like staying in unhappy relationships for too long, allowing myself to be manipulated by people I once thought of as friends, buying the smallest jar of Nutella. But starting a blog about my illness hasn’t been one of those bad decisions. It’s something that has allowed me to transform one of the worst times in my life into one of the most positive. It’s become an outlet for me to express my fears and struggles in adapting to an incurable illness. It’s also offered others in the same or similar position, a chance to feel less alone and maybe not as terrified to face their future. That makes my heart swell and is something I am incredibly proud of.

I do feel selfish sometimes when I write for ‘me’.  I often single-mindedly post here to help me deal with feelings I perhaps struggle to process, things I feel I can’t say to my friends and family, or to allow myself a platform for discussion. But it helps, so I forgive myself a little introspection and perhaps vanity. It’s also important for me to remember that you don’t have to read what I ramble on about – you have made that choice, so there the selfishness ends. 

I haven’t felt inspired to write for a little while now, perhaps because *SELF PROMOTION CLAXON* I’ve been polishing my book in preparation for its publication in a few months’ time. Or because I’ve been feeling distinctly below par with my own disease and that in itself is exhausting. OR, because I have been utterly floored by a lingering bout of The Blues.
(Answer: it’s all of the above I’m afraid).

I don’t often talk massively about my own struggles with depression. Mainly because I’ve never considered the feelings I have to be as intense or serious as to be referred to as ‘depression’.
But then you don’t have to be ‘intense’ and ‘serious’ to feel depressed. I don’t have to put myself in an imaginary box to give myself an imaginary label. I just have to admit my own feelings to myself and those around me.  Openly saying ‘I’m depressed’ doesn’t change me in any way; no more than saying I have a bowel disease does. Although it doesn’t always come that easily.

I suppose even I still have a skewed view on depression until recently. These people should be in dark rooms, despairing of their lot while watching the rain fall as All By Myself plays in the background shouldn’t they?
The truth is, depression, like my invisible illness, is concealable. Easily hidden with a smile and a laugh. An ‘I’m fine!’, or excuse upon excuse as to why you are cancelling on your friends yet again. It can go unnoticed for lengthy periods – if those around you don’t know what you are going through and you are unable to tell them you’re often left rummaging around alone inside your own head. Not the best place to be when it’s your state of mind that’s the problem.

Lately I’ve felt like I’m sinking.
I have felt hollow and pointless.
Weepy and miserable.
Unattractive and unworthy of love.

I haven’t written about this because it seemed so ridiculous. Who was I to advise anyone on how they should or shouldn’t steer their sickly ship when I was so obviously drowning myself? But on the other side of the coin – why did I suddenly forget that I do the same thing with my disease? I talk openly about my physical pain so why shouldn’t I write about my mental skirmishes too?
The difference is massive.
Because when you are depressed you don’t want to talk. You don’t want to do anything. With anyone. You  feel numb. You can be in a room filled with the people you love most in the world and find yourself unable to raise an ounce of enthusiasm. I can’t explain that, and I can’t make excuses for it. How do you tell someone you love that you feel nothing? You know you don’t truly feel that way, but when you are stuck in that fog it’s almost impossible to see beyond it. Besides, you’re pathetic and hideous, unintelligent and pointless – everyone you love will see that soon enough, it’s inevitable!
I don’t feel that way today. I didn’t yesterday either. Isn’t that GREAT?! Today I feel better. I laughed a lot yesterday and I felt warmth and happiness and loved. I was drawn to writing today because I can see that there is no shame in how I feel and that maybe some of you feel the same way. I hate that you do and want to squeeze you tight enough to juice out all your sadness. I also know that even if I had the strength or the plans and time to create an elaborate human juicer it wouldn’t work. It’s all about time. Time, maybe medication and/or therapy if that is the key for you. You’ll find your comfort like we all do with any illness.  
But what I’ve learnt from my recent bout of the blues is that is difficult on both sides of the depressed fence. When you feel deeply unhappy it’s hard to talk about. Sometimes you feel desperately that you want to tell someone but the words just cannot make their way out. Keep trying. Don’t assume they won’t know what to say, or that you’ll make them feel awkward, or that you will ruin a friendship. You won’t.
When you know someone you love is struggling; persevere. Don’t give up on them. Don’t give up when they snap at you, cry at you, and take things out on you. They don’t mean it and deep down you know that; because you know them. Don’t berate loved ones for not contacting you sooner – there are a million and one reasons we couldn’t – most commonly it’s a struggle to get out of bed let alone call a friend and weep openly down the phone. You don’t have to know ‘what to say’ either; there are no right or wrong answers.
 If someone reaches out to you because they are struggling, or maybe they don't but you know they want to, please don't give into awkwardness or the trap of not knowing what to say so saying nothing. Talk to them and let them talk to you. It's essential and can be the difference between life and death.

Keep well, K xox

Wednesday, 6 January 2016

The Fault in our Scars

The latter part of last year was an introspective few months for me. With the help of some people who love me, I established I’ve spent a lot of my years on earth to date holding onto bitterness and anger over past events and the hand life has dealt me. I’ve spent a lot of time, no, wasted, a lot of time, blaming people/ things /happenings in life for my own misery. I’ve realised I’ve been neglecting to take full (or sometimes any) responsibility for my own actions. Although always unintentionally, relying on having a fail-safe(s) to blame for my own failings has been a pattern of behaviour uglier than a Donald Trump patchwork.
It may of course sound trite and pitiful, all this psychobabble. Especially when it’s coming from a 32 year old woman and not a stroppy teenager, but that’s ok, it’s just taken me a little longer to iron out some of my internal creases. Some people don’t ever look inwards. You would’ve thought I’d done my fair share of that over the years due to numerous colonoscopies; but this time I’m looking at my behaviours rather than my colon. (Attractive as it undoubtedly is).
I’m not trying to batter myself over the head with what I consider to be my failings either. It’s good, all this. It’s actually liberating. It feels good to finally free yourself from the shackles of bad habits, and that’s all this really is – bad habits I’ve fallen into and accepted as part of myself. We all do it; although to a lesser or a greater extent. Don’t get me wrong; I don’t feel that I’m a complete shambles of a woman. I’m not; I’m pretty smart, not troll-like hideous, fiercely independent and armed with a vast knowledge of both cats and David Bowie’s back catalogue. But like everyone I’m not perfect. (Whatever that might be).
Of course there is a point to this blog and not just an excuse to wax lyrical about myself and use this as some sort of forum for psychoanalysis. (God help me if it were…) I wanted to make the point that having a chronic illness may have caused you, or someone you love to fall off the responsibility wagon.
You may not have realised how much of your life is spent feeling angry and bitter. It just bubbles and seethes and occasionally boils over hurting yourself and the people you love. You’ll blame lack of progression in your career, education, relationships or all of the above on being ill. It’s hard not to when it can be so all-consuming. This may last a week, a few months, years or even a lifetime – if you let it.
I’ve tried not to blame Crohn’s for the things that have made me unhappy. But in the past I have. I’ve accused it of holding me back and stopping me doing the things/people that I love. The truth is it DOES hold me back – in small ways such as having to give up parts of my day over to hospital appointments and procedures. Having to give up parts of my internal organs to the surgical waste disposal. Being too ill to have FUN.  
But in order to have the happiest life outside of your disease you have to learn how to slot these changes into your day to day life and let go of some of the anger and frustration you feel. Accepting what you can control causes a domino effect which will only lead you down the yellow bowel road to a happier life.
When you stop yourself from achieving a goal, or fail at something you’ve attempted, be it small or large; stop a minute and consider all the issues that have lead you to this point. Is there anyone or anything to blame but yourself? Is ‘it’s my diseases’ fault’ what you really believe?
I catch myself now. I stop myself before I wind myself up into a Crohn’s VS Kath frenzy. It's cathartic; and calming. If saves my bowels from burning like the Sun due to unnecessary stress, aids happy relationships and stops unnecessary arguments.
When you take a moment to look inwardly it’s like a mirror is shone on others. You see how deeply apportioning blame over taking responsibility can affect lives. It becomes clear who is using the age old argument of ‘my life is so hard because of X & Y’.  Granted that was one of the more awful Coldplay albums but I’m over it now. I can’t continue to blame Coldplay for all of my problems in life, and neither should you.

It’s U2. It’s all U2’s fault. 


Tuesday, 8 December 2015

Every BODY Hurts, Sometimes

Everything” - was the am-dram response I gave earlier today to the question, “What hurts?” from a friend. It may sound dramatic and borderline bullshit, but at the time it was a frighteningly accurate description.
Allow me to set the scene: I’d eaten some lunch; nothing wild, no endangered species lathered in butter, no sizzling spicy concoctions. Just some chicken and some salad. Oh and a bit of potato too, but even then I only ate the inside, leaving the skin as I know it destroys me. So, a boring, but non-hazardous lunch – YOU WOULD THINK. But you’d be WRONG. And you can tell how serious I am because I AM USING CAPSLOCK.
Today ‘everything hurts’ is an accurate portrayal of how I am feeling. Boring lunch or no boring lunch.
My bones and muscles ache. My stomach is cramping and pained. My head is splitting. My eyes are itchy.
MY HAIR HURTS.
The list goes on. (But not here, and not right now, because I would like to retain at least some readers by the end of this post). The reason I’ve taken to my blog to electronically whine about all of this is because answering that question today and feeling like a drama queen stressed me out. It frustrated me that answering questions on my disease honestly, often has such dire consequences; even in my own head! I know I am not lying or bending the truth yet I can still feel like a fraud saying it out loud.
How is it possible to feel pain, and then feel shame when audibly expressing it? (I suppose ‘shame’ isn’t the right word; maybe frustration?) A feeling that happiness, and ‘normal’ conversation is thwarted by a constant nagging pain. Crohn’s is that annoying boy who used to pull on your bra strap, or that puddle you step in with suede shoes on. Always putting a dampener on daily life.
It’s possibly the raised eyebrows and the perceived doubt from others imposed upon us when we convey our illness. We look fine after all. I can’t even really blame people for this doubt; I sometimes look at myself in the mirror and even though internally I feel like Satan has set up home in my intestines, I still look a million dollars (well… maybe a tenner). That alone can have even the most diseased women doubting their symptoms. We learn to question our every twinge and hold off from seeking help because ‘it could be worse’ or ‘it has been worse’. But that can also be dangerous.

If we are struggling we should vocalise it. Not to doubt ourselves, or accept doubt from others, but to trust our gut. Even if it’s the gut causing all the drama in the first place. 

Wednesday, 2 December 2015

Day 2: #7DaysOfIBD


Day 2: 
Woke up in a lorryload of pain today. My BF who is currently on holiday, offered to nurse me/do unmentionable things to me if I sacked work and stayed in bed. Unfortunately I am a sucker for punishment and don’t want us to lose our home and cats so grudgingly went to work instead. 
It’s going to be a hard day; excruciating pain at my desk makes it hard to concentrate on the job at hand and slapping on a smile is easier said than done. It can be practically impossible to grin through pain. You can't focus on little else. And don’t even start me on the fatigue! No amount of sleep is ever enough. So when your colleagues arrive and complain of how 'tired' they are, it can often be a major tolerance tester.
As with most days I’ll have my daily dose of ‘suggestions’ on how to best treat my disease. Before 9.30 yesterday I was suggested Manuka Honey and Aloe Vera. On both occasions I smiled and said “well if it works for you that’s great” then silently considered all the ways in which I would gut them and bury them under my patio if I could get away with it/had the stomach for it.
Being offered suggestions on what we should and shouldn’t do is a common aside in living with IBD. What we eat is watched and judged (“should you be eating that?”), how often we visit the bathroom is monitored (“you were away a while…”), how we look (“well you look ok…”), and how often we are unwell is pressed (“but you were sick last week…”). Those are just a few of the enquiries we encounter on an almost daily basis.
Some of these comments can come from loved ones though, and in almost all of these cases; said with care and concern. On the whole I try to remember that the majority of people proffering advice on my illness are doing it with good intentions and a good heart. I'll try to remember that later today when I'm water-boarding them with Manuka Honey.


Sunday, 15 November 2015

Life, Oh Life

Last month was Suicide Prevention Month. I neglected to post this back then because I was feeling raw, sad and angry myself, about the fact that (much more recently than I’d like), more than one of the people I love most in the world have considered suicide. I feared that because of this I would write something I’d regret later, consumed with panic and sadness.
But those people are still alive as I post this today. And that makes me incomparably happy.
I'm saddened to admit that in my 32 years on this earth I've had more than one friend tell me they wanted to die. Not in that melodramatic “kill me now!/arrrgh I wanted to die!” language that we all use when dramatizing the most inane of situations; but that they genuinely didn't want to live. I've known people who have gone further and attempted suicide, and even worse; those who were successful in those attempts. Every time my heart has broken a little bit more – not because it hurts to think of the grief losing someone would cause me (although that in itself is horrendous); but because I feel an utter failure as a friend. I've struggled to grasp how I haven’t seen someone sink so low, and felt powerless to stop it from escalating. My heart has broken for someone I love feeling so lost and hopeless that they can see no way out. 
I know many people who consider suicide a selfish act. I probably have too, at one point or another in my youth, so I'm by no means saintly here. As a child I heard someone call it ‘attention seeking’ – I couldn't grasp that; how would they know they've gotten the attention they had craved after they are gone? Will whatever deity they believe in fill them in on how many people are grieving? Do they win some holy raffle if the act of ending their life has led to the outcome they wanted? What then? A slow hand clap at the pearly gates?
Everyone who wants to take their own life does so for their own reasons. I can’t begin to generalise and I would never make any sweeping judgements on their motives. But I certainly do worry that the belief that suicide is a selfish act is incredibly damaging, and shows a startling misunderstanding (and ignorance) of mental health issues. It only serves to insult the departed and I believe does more harm than it could possibly do good.
Don’t make someone’s anguish about you.
Personally I currently believe no problem is insurmountable. I know that may sound naïve (and it does). Because I don’t always feel that way, and I know how utterly overwhelming depression, pain, grief, sadness and hopelessness can feel. Right now, today, on a good health day, with a washing done, a shift under my belt and two cats to cuddle, I feel anything is achievable and that anything can be overcome.
But then I don’t feel depressed and hopeless right now. 
That’s the mystery of life: no one feels one way all of the time. Things happen and they change people; sometimes for the better and sometimes, well not so much. My illness changed me and has left in a position where I’ll be forced to fight for my life until the day it ends. That has left me with a different outlook; sometimes negative but hopefully more positive. I want to live, and I want to be well. I appreciate I am not in control of the latter but I most certainly am, the former.
I myself am well aware I am but a tiny and insignificant speck on this massive floating ball we call a home. In the grand scheme of humanity I am a tiny ant. But not to some people. To some other tiny ants I am everything, and I somehow make their lives a little happier just by existing. How incredible is that?! We all hold the power to make another person happy just by being alive! There are ‘ants’ in my life that I love so dearly I could sob with excitement just to see their face after a long time apart, grin from ear to ear just being near them, laugh until I can’t breathe in their company and miss even when they have barely left my side. If we continue with my any analogy then these are the people I would never want to see crushed under someone’s muddy boot. 
I don’t want to offer up any solutions to the horror that is suicide, because I am nowhere near qualified for that – and mainly because there are no one-fits-all answers. When you see someone you love struggling, reach out to help where you can. You have no idea how massive what you may feel a minor effort can be. If you don’t see them struggling; don’t torture yourself that you should have. We can’t always save those who don’t want to be saved. That’s not in any way OK by me, but its life. It can't consume yours. 
The world is a horrifying, challenging, overwhelming and cold place at times, and kindness is a coat we don’t tend to wear often enough. Let’s help one another into it; one arm at a time.

Tuesday, 3 November 2015

Body Balks


‘Body-shaming’ is big news these-days. It’s a long-standing issue of course, dating back to the days when we used leaves as underwear no doubt. Although if you come from my local area that was only last month. Men and women alike have always been portrayed in certain ways in papers, magazines, on TV and on film. We are supposed to look flawless 24/7. If not we are doing something/everything wrong. We are supposed to preen/starve/paint ourselves to fit the image we see all over the media.
It’s not REAL. It’s not possible.
The world is filled with vanity, where beauty and perfection are portrayed to be everything. Thankfully nowadays more and more women (and men) are speaking out on the incorrect ways they are depicted in the media. Pleasant news, as if we were to attempt to keep up with them it would be a full time (and decidedly un-fulfilling) job. One made harder still when you have a disease like Crohn's.

IBD or any chronic illness, and can change your entire body (and attitude towards it) in a mere matter of hours. When I'm in the midst of a flare-up the disease affects my hair (making it dry, thin and fall out in clumps), skin (dry and sore), makes me bloat to beach ball proportions, gives me hot flushes, makes my face chalk white and makes my body ache all over. You can imagine why it’s pretty difficult to feel confident and attractive when all of that and more, is going down.

Women in particular, have beauty shoved down their pretty little throats everywhere they turn. Sex and supposed 'perfection' sell everything; a gorgeous model in a slinky dress will be used to sell anything from a new Audi to a tube of Anusol.  And we are designed to lap it up. Well of course we are; these women are far more beautiful than us, so logically if we own that product, we too can be just as beautiful. It makes perfect sense! If you choose to ignore the airbrushing, and make-up artists ad hairdressers and personal trainers who all help make this perceived perfection possible. Despite knowledge of all of this, we still continue to put so much pressure on ourselves to look, dress, and act a certain way in order to feel accepted. Usually by people we don't even like.

None of it matters. In 50 years I very much doubt how good I looked in that Instagram filter will matter to me too much. (Mainly because I’ll be dead long before then; I am Scottish after all). But also because my health, and my self-esteem are what matter. I want to be known for being confident enough to express myself, helping those who are less fortunate than me and complimenting a beautiful woman rather than berating and secretly envying her.

In living with this disease I know I will never be conventionally 'perfect'; and that’s FINE, because such a thing doesn’t exist. But I am unique; for example I have a jazzy scar down the front of my stomach; leftover as a memento from where an amazing woman (I'm sure with the help of some excellent male nurses...) saved my life and removed a really, really ugly bit of me.

That can only be a beautiful thing.


Saturday, 31 October 2015

Write On, Write Aff

Here in Scotland a common phrase one may use when they are perhaps hungover, ill, or just generally looking an absolute mess, would be; “Whit a total write aff” 
[translation: ‘What a complete write off’: not currently fit for purpose]

In living with chronic illness you will find yourself feeling and looking like a ‘write aff’ more often than most. I've had a good few 'write-off' days recently. Those days where you find, thanks to illness, all your plans are out the window whether you like it or not. You are floored. Work is a mammoth undertaking; in fact much more than turning over in bed is nigh on impossible. Plans made are cancelled, friends and family are let-down and housework builds up around you faster than cat hair on a silk blouse. (Speaking from experience there obvs).

On my recent series of write-off days, I missed a day of work and spent around 3 full days in bed. Today though…I got out of bed! And even showered! I'll wait for the applause to die down then I'll continue. 
Celebrating small victories is a common aside in living with chronic illness. It may not seem much to praise ourselves for, but it’s important, as we spend so much of our time internally beating ourselves up for what we are missing out on or unable to do for ourselves and others. It’s incredibly frustrating being ill. So, SO many wasted hours. The guilt at missed work, the annoyance at letting those you love down, and the pain and misery experienced when riding the wave of debilitating symptoms.


What I've come to realise though, is that self-care is very important. No, I'm certainly not saying that knowing how vital it is to look after number 1 makes the guilt of missed work or cancelled plans any easier, because it doesn't. Mores the pity. However it’s the sensible thing to do. Always the most boring I know. 
The more in tune you become with your own body the more you know when something is wrong, and the more you know when it’s time to take a step back and let yourself rest. If you manage a little work, or complete a menial task then well done. Just don’t break yourself in two trying if you don’t have  to. 

Learning to take the time you need to recuperate will always be more important than doing the dishes or hoovering the carpet. Besides I've been "unable" to lift the hoover since my last operation, and I intend to ride that particular wave for at least another 12 months. As far as my other half is concerned, hoovering is a ‘write-aff’ ;)  


Saturday, 24 October 2015

Cistern of Mercy

Whilst having a cupboard clear out, amongst old gig tickets from cringe-worthy bands I pretended to like to impress boys, countless, countless love letters, and 20odd years’ worth of birthday cards, I found my old diaries. I’ve kept a diary since I was around 14 years old. It’s been a confidante through my teens, a comfort through my twenties and a cause of major hilarity and heartbreak years later.

At the end of a year I tend to hide my diary away. This tradition probably stems from the happiness at the closure of a perhaps below par 12months, and the nervous excitement of starting a new one. But today as I came across my own past written in scrawled biro (with notable devotion given to CAPS LOCK), I lingered on 2010, and the year in which I learnt I first had Arthritis, followed swiftly by Crohn’s Disease.

As I fingered through ‘myself’, err my words that is; I found myself crying and cringing in almost equal measure.  The first few months of the year were spent in compete denial there was anything wrong with me, despite all the evidence pointing otherwise. As I noted hospital visits, pain and toilet peculiarities, it was all done with a matter-of-fact attitude that after a while whatever it was would be fine.

‘Fine’ features a lot in 2010.

Reading all of this back now makes me feel almost embarrassed for my 26 year old self. She had NO IDEA what was to come, and no idea how to cope with any of it.

What struck me most in the pre-Crohn’s diagnosis days was how tired I was all the time. I don’t particularly remember that part when I look back now, (although that’s understandable as there was a lot more gruesome stuff to come), but I think it’s important to focus on it, as now I realise what a clear sign exhaustion is that something is awry. I feel quite the fool reading of my utter naivety now that I’m decidedly more versed in the workings of my own body, but back then I was a dunce in the deduction of illness. 
Now I have an encyclopaedic knowledge of my own back passage of course, and not many 25 year olds' can be expected to have that, unless they are in extraordinarily specific and somewhat questionable professions…so I won’t beat myself up too much.

Anyway, one quote from my diary, which particularly upset me, and struck a chord even today, was in relation to my…relationship. I spoke to my leather-bound confidante on my permanent exhaustion and nausea, and how it left me cold in getting amorous with my beloved:

‘I couldn’t possibly try to explain to him why I don’t want to be with him and I think that’s what’s going to end up being the death of us, just not being able to explain the way I feel about things’

This made me cry a little because it reminded me how deeply the disease was affecting every aspect of my life, even before it had even been officially named. Already I was unable to communicate my feelings to the man I loved because I was incapable of communicating them to myself. I was completely and utterly alone. Trapped in my own failing body.

I feel sad for my former self because I want to scream at her to go back to the hospital! See the doctor! Don’t listen to that colleague! But as we haven’t quite mastered time travel yet, I just have to make do with saying the same to any of you who need to hear it.

It wasn’t ‘the death of us’ by the way, nearly the death of me, but I thankfully dodged that particular bullet too. I suppose the reason I’m relaying this afternoon of musings from my memoirs; to remind you that it’s important to trust your gut. (Even if it’s your gut, that’s letting you down). If you think something is wrong then push to get it clarified. Talk to the people you love – if you don’t understand what’s happening to you and can’t find the words then just tell them that.


If all else fails, write it down. Just don’t wait 5years to read it again. 


Tuesday, 13 October 2015

Crack To Life

I don't have a single clue what I'm doing.
That's OK.
I don't have to.
I’m 32, and I don’t have a single clue what I’m doing!

Don’t worry [MUM], that doesn't mean I don't have ambitions, and goals in my future that I want to achieve, because I really do. I just don't have it all worked out just yet.
Not quite. Does anyone? I’m not sure.
If Facebook posts and stop-and-chats with old school friends are anything to go by, most people seem to have life all figured out. It’s all going swimmingly. I just don’t buy it.
For some people I’m sure life IS sweet. They are in the job they want, have a happy relationship, and maybe some perfect kids/cats. That’s great and I’m very happy for you.  
The truth is, for young women (and I’m sure men: I just don’t have that same experience to share), there is a tremendous amount of pressure on us to have ‘it’ all worked out pretty early. Despite being endlessly told not to grow up too fast, not rush into anything and enjoy our youth because it's the 'best time of our lives'; everything else tells us the exact opposite.
Decide what you want to do with the rest of your life before you leave school.
You're 16 you should know what career you want by now, come on!
Get a further education.
Get that job.
Get married, have those 2.4 children.
Get a mortgage.
Get a pension.
Write your will.
Die.

WOAHHHHH there. Can we just take a minute to ENJOY life? And see where it takes us? When I approached turning 30 I did so with not so much trepidation, more like abject terror. I focused solely on what I hadn't achieved. The rules of relationships and expectations put on me by every book, film, magazine article around me. I hadn't found my dream job, my perfect home, I wasn't married and I didn't have children. What had I achieved then?
That’s right: Nothing.
So instead of wallowing on my apparent failures I decided to forget about it and have a big party where we all dressed up as 80’s icons instead. (That was definitely one of my better and more glitter-inducing ideas).

I got sick though. Not that night. Although I did mix my drinks and eat faaaaar too many potato wedges. I became ill in my mid-twenties. It suddenly didn’t matter what job I had, or what colour of paint I’d buy for the lounge; it mattered that I stay alive long enough to wallow in the joy of choosing paint colours.
Illness, no matter how seemingly insignificant to those on the outside, can be genuinely life-changing. It can be all but impossible to simply fall back into old routines or old ways of thinking, because for you everything has changed. That can be very hard for those around you to understand, let alone accept.

That’s OK too! Don’t push them to, and more importantly don’t push yourself. You are doing the best you can so just keep at it. Much like our defunct bowels things will work themselves out eventually. Just be patient. A patient, patient if you will.

After all, your [insert current decade of age here] are the best time of your life.