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

Thursday, 17 August 2017

Good Grief



I’ve written a little in the past about the similarities I find between coming to terms with a chronic illness diagnosis and the stages of grief. It’s been on my mind again recently for different reasons: the idea that just as grief rears its weepy head every so often so does the same feeling of loss that comes with having an incurable illness.

Lately I’ve been missing my beloved Grandmother quite a bit and recalling how I felt when she passed away.

 

*I didn’t at any point say this blog was going to be a rollercoaster of non-stop fun so get off now I’ve you’re not tall enough to come on this ride*

 

My sweet Granny Peggy died when I was in my early twenties. I was in the first flush of romance with my first ‘proper’ boyfriend and heading on a holiday. She died in hospital, I was there, thankfully, along with the rest of our close family. She was ‘ready to go’; she told me as much many times, and now that I’m older I understand why a little more; then I just couldn’t bear to hear the words. I didn’t want her to go and selfishly wouldn’t so much as contemplate the thought, choosing instead to do everything aside from putting my fingers in my ears shouting “LA LA LA” to avoid the conversation. She wasn’t being selfish; she was just tired.

 

My Gran was my salve. We lived in the flat downstairs from her for many years, the whole of my childhood in fact, and she was a safe bosom to run to whenever I felt overwhelmed, sad or just needed someone other than a parent to listen to my childish nonsense. What I always remember most about my Gran was her sense of humour, she laughed a lot and loved to hear us laugh. She loved to throw me back and give me ‘French kisses’ (her version of this was just pecking my neck until I giggled and wriggled away like a happy eel), we danced around her kitchen a lot and she let me draw on almost all of her treasured possessions. I wrote her poems and stories and she lauded them all with praise worthy of a Pulitzer.

 

So reminisce aside what does all of this have to do with Crohn’s Disease? Well the grieving I do every so often for my Grandmother feels painfully similar to the grieving I do for my life pre-Crohn’s. Right now I’m flaring and feel decidedly awful most of the time; when this happens it sends me into a flurry of anxiety. I worry about how long this will last, how it will be remedied, what adjustments I must make to my life and what it must feel to live with or be around a person such as myself struggling with keeping it all together and not finding much room for anyone or anything else. Sound familiar? Grief is all-consuming and unpredictable just like chronic illness. It strikes when you least expect it and lingers for much longer than you’d like.

 

But sometimes, you forget. Sometimes you feel good and that’s OK. It’s OK to revel in feeling happy despite loss. It’s OK to remember happy times and not feel guilt for what you could or should have done during the bad. So when you are struggling with illness (or grief) and feel lost try to remember the good; and that that good will come back around in time. Focus on what you have and not what you have lost, because sometimes that’s all we can do to get through. xo


Wednesday, 19 July 2017

My Kind of People


Chronic illness is used as such a ‘catch all’ phrase these days. It covers a myriad of illnesses, diseases and disabilities. But then couldn’t all of those words be used in the same vein? Don’t all chronic illnesses ‘disable’ us in one way or another? Make us feel ‘diseased’? 
Chronic, as it relates to illness, is defined as ‘persisting for a long time or constantly recurring’. Its meaning is clearly definable but the number and variety of conditions it covers is certainly not finite.
Health, and especially frequently poor health, naturally hits highs and lows. Sometimes those lows last for what can seem like the longest time and you struggle to see an end to them. This can be hard enough to deal with on your own, but factor in having to communicate your health issues to the outside world and you’re faced with a whole new set of complications to deal with.  Explaining the intricacies of a condition to an outsider can often be intimidating and challenging to say the least; particularly if you are new to it yourself and still learning. When we do discuss our condition with others and don’t get the response or reaction we perhaps expect, it can be quite the setback. Often living with a chronic illness can feel humiliating. It can be embarrassing, distressing and complex. Often we don’t want to talk about our condition, which is wholly our right, of course, yet sometimes our symptoms make that privilege all but impossible. If it is a visible condition it allows for comment, and that’s something we sadly can’t control.
So pulling on at that thread of uninvited comment, a certain infuriating phrase that sticks in my head, and has been said to me upwards of 168798782784240 times, (at last count anyway) is:
 “There always seems to be something wrong with you…”
This is generally said as an off the cuff, (perhaps feeble attempt at humour?) with a snide undertone. It’s often spoken with a question mark at the end of it; as though we are somehow expected to answer to it. It’s not really deserving of a question mark in my humble opinion as it’s more of a statement of fact. I’m not sure what the relevance of such a question is either, other than to remind us that we are ill, ALL THE TIME. Sadly something we are all too aware of already.  The only answer that could be given to such a bizarre poser (and I find it most effective bellowed through a megaphone) is “YES, THERE IS ALWAYS SOMETHING WRONG WITH ME: IT’S INCURABLE”. But that response only served to get me thrown out of the library and banned from the local church the last 5 times I used it.
It is phrases such as these that are upsetting to someone with a disability and/or illness for many, MANY, reasons. Let me count the ways. (7. There are 7 ways).
1.  It implies we are being untruthful about our health problems. If you have to query in a suspicious tone that expects us to answer for an incurable condition then you nail your ‘I DON’T BELIEVE YOU’ colours firmly to the mast. This funnily enough doesn’t make for a comfortable conversation to follow.
2.  It makes us feel like a nuisance. No person who even remotely cares for another person should make them feel this way. Implying we are using our condition for attention or exploiting it for our own gain is just mean at the root of it.
3.  It singles us out. We don’t want to be sick, and we certainly don’t want to be treated any differently to a ‘normal’ person. Suggesting we are seeking some end goal other than the best
possible health makes us retreat into our shells and that can be increasingly risky for those of us with already wavering mental health.
4.  It makes us feel we are appearing like a hypochondriac. Anyone with a chronic illness dislikes hypochondriacs intensely. We have to eat, sleep and think about illness every day; we don’t need to hear you give us chapter and verse on that one time in 1983 when you had the measles. Just because you perhaps aren’t used to hearing people talk honestly about an incurable condition doesn’t make it any less true when we do.
5.  It silences us from talking about our illness. This is NOT good. We need to talk about our conditions because it allows us to educate, share, unload and learn. The more we remain silent on what we are experiencing the more withdrawn we become and the more ashamed we feel.
6.  It makes us feel embarrassed and ashamed. As above: not good. Something we should never allow ourselves to feel. Chronic conditions can get such bad press; we need to be at the forefront of changing that, not being beaten down by uninformed opinions.
7.  It reminds us that THERE IS ALWAYS SOMETHING WRONG WITH US. Yes, we KNOW.
On the flip side of this ghastly and mildly insensitive coin however, when met with thoughtlessness of this degree, I often try to mentally counter these statements with any positives I can find in them. Easier said than done, especially when you are still clutching a knife to their throat, but if you take a mental (and maybe physical) step back, and look hard enough you are bound to find something.  Let’s throw the negativity over the balcony, crushing it painfully below, causing irrevocable damage, and try that now.
1. Yes there IS always something wrong with me yet I’m still here, being alive alongside you, making me better than you in so, so many ways, and that’s excluding my impressive rack. 
2.  No, nope, sorry I think that’s all I can come up with. Maybe I’m just not a very
forgiving person.
The issue with phrases like the aforementioned “There always seems to be something wrong with you…” is that, whether intended that way or not, they are simply unkind and just so unnecessary. As I’m not (at time of writing) practiced in mind control, I can’t stop people thinking things like that of course, but I can certainly voice my discomfort when they allow the words to leave their lips. Meaning if you’re going to openly say something along those lines to someone with a chronic illness then you should really be prepared for the potentially messy fallout.
What may seem an entirely innocent comment on our condition to you may come across as a not-so-subtle jibe directed at us for reasons we’ll have to retreat into paranoia to discover. You see, it’s not ‘just a joke’ when you make another human being feel essentially lesser.
Kindness is so easy. It’s often found simply in inaction. It’s effortless! You can be kind by just not saying that thing you know would be taken badly should the person it’s aimed at hear you. Just don’t say it! It’s that simple! You can be kind by taking a moment, just one precious moment, to consider the outcome
of your words. If you have an inkling that what you are about to say to another
human being may be mean or insulting then just don’t say it. NO, you won’t
receive an award for it, but you also won’t receive a black eye, so swings and
roundabouts. Think bad thoughts by all means; we ALL do that. It’s one of the silent joys in life. But in much the same way you wouldn’t follow up saying “I’ll kill him” with then committing
ACTUAL MURDER, you can think we are lazy (for example), without actually
accusing us of being so. 
Maybe just consider this: Are you the type of person who deliberately sets out to upset and offend another human being whose only crime is not acting or looking the way you want or expect them to? If you answered yes to that then I hope you find what’s missing in your life someday. 
(See how easy it is to be kind instead of wishing you dead?)

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, 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’       

Wednesday, 16 March 2016

My Little Brown Book

My first book on Crohn’s Disease will be published in a mere matter of weeks on the 21st May! I’m very excited to share it with you. Here I have gifted you with an extract from it (completely GRATIS!!!!) I know, I’m too kind, I’m just a giver. Hope you enjoy!


‘It’s widely known that very few people are 100 per cent comfortable in discussing their bowel movements, and until I was diagnosed with Crohn’s Disease, I would certainly not have considered myself amongst them. It just wasn’t really the ‘done thing’ in my household. I’m not sure if this mild prudishness goes back generations or was just more of a trait within my own immediate family, but it’s certainly something I became more acutely aware of as my problems in that department began to escalate. I realised I felt vaguely uncomfortable and borderline ashamed about discussing anything untoward that may have been happening below the love handles.

I don’t, in any way, blame my parents for this. I don’t blame anyone, for that matter. It may have absolutely nothing to do with my upbringing, but there was obviously some reason I felt so unpleasant about discussing my own rear end. It’s just one of those things I can’t quite place. This ‘thing’ however, made it decidedly more difficult for me to be as honest as I could with doctors and nurses when they were struggling to diagnose my illness. I felt it was easier to nod in agreement with their suggestions than to express the full extent of the aforementioned ‘uproar’ I was experiencing down there. I wanted to save myself the red-faced humiliation, and no matter how much I was told they’d ‘heard it all before’ I couldn’t escape the fact that I was actually being forced to talk about POO. MY poo for that matter.
This fool couldn’t handle her own stool.
This missus couldn’t discuss her faeces.
This burd couldn’t debate her own tur…you get the general idea.

In Crohn’s Disease a patient’s toilet activities are very important indeed. What ends up in the porcelain can be an incredibly vital clue for doctors in establishing the extent of the disease and its effects on the body. Medical professionals can discover so much from just a small, unassuming stool sample. Not only that, but they can also garner a huge amount of information from simple questioning. All of which means as a patient you really have to get to grips with ‘talking shit’. Normally an absolute BLESSING for me. They will need to know specifics. What consistency is it? Is there blood in it? How much is there, and how often are you going? I’m never particularly comfortable with this kind of bizarre quizzing, but I’m slowly trying to learn to get descriptive about it. In fact I now find that more people around me feel they can openly discuss their own bowel movements, whether I want to hear about it or not. As though I’ve unwittingly become some strange form of poo guru. A Poo-ru, if you will. People have started asking me what it means when this, that or the next thing happens in their bathroom. I absolutely do not profess to be any kind of expert on matters of the rear, however I do have extensive knowledge of various unsavoury scenarios that people tend to think gives me insight others perhaps don’t possess.

Many new (and old) patients also find this type of ‘in-depth’ colon-versation difficult to take to at first. Most of these patients, thankfully, find that they eventually become immune to the discussions with medical professionals that take place around that area. They come to realise, as I’ve had to, that it’s essential, unfortunately, in helping the doctors do their job to the best of their abilities. At the end of the day, it’s our health on the line; therefore we should do everything in our power to help ourselves get better. I often find myself getting incredibly frustrated by the fact that there still seems to be such a stigma attached to Crohn’s Disease. This stigma spreads itself across several other bowel-related illnesses for that matter. We, as humans, are all essentially the same; we all take in food and water in the same way and all expel it in the same way too. So why should we be embarrassed to discuss these things openly? That’s not entirely true of course, humans with Crohn’s often find their bodies (and in particular their bowels) don’t work in quite the same way as those without, however much we would like them too.

When you have been established as a Crohn’s patient, you may find a lot of your doctor’s time can be spent at your rear end. Not a thought I’m sure you, or your doctor, will particularly relish. Colonoscopies and other similar procedures can be invasive and often require ‘probing’. You know – that thing that aliens always do in films when they come down to Earth for a visit. One could certainly say it is an alien concept, for a stranger to drug you then shove a camera up your back passage without so much as a mojito for your trouble. Then, as if that weren’t enough, for you all to sit around and watch the show on a screen! WITHOUT any popcorn. It’s an absolute scandal! I exaggerate, obviously; you do get a mojito (if you go private).’


For more of this nonsense you can purchase ‘Go Your Crohn Way’ when it is available to buy from 21st May (and it can currently be pre-ordered from Amazon). You can sign up to email alerts from my publisher here:





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

Thursday, 31 December 2015

Reelin' In The Rears

It’s that time of the year when we begin to reflect on the past 12 months/drink too much/worry about not having anyone to kiss at midnight/contemplate suicide. Depending on your viewpoint, this ‘reflection’ can involve getting drunk and internally screaming THANK GOD THAT’S OVER (usually my favoured option), or perhaps fondly remembering what has gone by with affection and gratitude.

For me, this year has been difficult, stressful, painful, and WONDERFUL.

2015 began, as most years do, in January with me having been nominated for 4 WEGO Health Awards. I made Finalist in two categories! Beyond my wildest expectations and an honour to be listed among some amazing health advocates!  It was also a joy to see some of my favourite IBD writers take prizes. Very proud to be amongst others raising awareness on such a grand scale.
This past 2months I’ve been nominated in the UK Blog Awards, and for Healthline’s Best Health Blog of 2015. A thrill and a lovely end to a busy year! I don’t expect to win either of these as they are fiercely fought contests, but again I am delighted to be listed amongst such talented individuals!

In May I started my Infliximab treatment. This is the first biologic treatment I have been on, so naturally I was very apprehensive. After bombarding my IBD nurses/consultants with a million and one questions I braved my first infusion. I always prefer to be independent around my health but this time I must admit I was afraid and felt alone. However the treatment has proven successful and is keeping any active disease at bay. I am still floored from time to time and struggle in the weeks leading up to my infusions but so far so good. I understand this intestinal bliss won’t last forever, but I am enjoying it while it does nevertheless.

In August my lovely Mum turned 70! We celebrated with a lovely lunch together with my brothers. She is as vibrant and full of life as she was when I was a child and I am proud to call myself her my friend as well as her daughter.

In September my beau and I celebrated 10years together. A decade with the man I love. By no means has our relationship been a smooth ride, but who can say spending 10 years with someone ever is? Love changes and grows as you get older and I adore living through that with him. 

In October, after a long hiatus due to fear of rejection, I finally started to receive responses from my having sent away my finished manuscript. My book on my life with Crohn’s Disease  was accepted by 3 publishers and I’ve signed with a fabulous and friendly publishing house who are planning to release my book in Summer 2016! I am still in shock to be honest. Every step of the process is more intense and exciting than the last and I am relishing being such a close part of the books’ development. So thrilled for you all to read it – my life and bowels are in that book, and messy as that may sound, I hope that helps even one of you in dealing with your own defunct insides.

In late December, we added a new addition to our growing menagerie (of two humans and two cats) – a massive dawg. His name is Lucky and he’s had a tough old life for his mere 3 years. He’s the softest and sweetest dog on the planet and that’s coming from a well-known cat lady. We are going to give him a great future in a happy, loving home.

So as I head into 2016 I have lots to look forward to and lots to keep me pushing forward. Thanks to all of you for your continued support and love, and know that it’s reciprocated fully. But please, one more restraining order and I’ll be arrested. Happy and healthy New Year to you all, I love you! xox


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. 

Thursday, 3 December 2015

Day 3: #7DaysOfIBD

Day 3:
Well firstly, It’s been an exciting few weeks for me, as I've recently signed a publishing contract for my first book! I am still in shock that it’s really happening. The pessimist in me is still waiting for it all to go wrong but I'm trying to live in the moment and ENJOY IT.
It’s on Crohn’s Disease and is designed around my own experiences. I hope it helps someone like me. I know I certainly would have benefited from something practical and light-hearted when I was diagnosed. Everything seemed so bleak and hopeless. I was bombarded with information (and worse, misinformation) and medical facts and figures that were impossible to take in. But nothing on how to cope day to day. After the initial shock of finding out what was wrong with me,I was still at a loss as to how to ‘live’ with my new disease. I'm hoping that my writing will help at least one person in the same situation.
But I'm not here to plug my book! (Which will be available in mid 2016 ;) ) I merely mention my news as it serves as the precursor to my update of the day. In my whirlwind of nervous excitement and celebration, Crohn’s has snuck up on me. I've been absolutely loaded with the cold for what seems like months now, and my immune system is at an all-time low due to my current Infliximab treatment.
I'm finding this week a struggle and am floored with exhaustion. But the light at the end of my colon is my good news. This is a rare occurrence and although in living with, and writing a book about my disease it’s been my every waking thought, it’s nice to sometimes forget. IBD makes that harder than you think. Almost impossible on days like today when I feel so tired of it all. 

I have to force myself to focus on the good in my life and rest where I can. I hope all of you are able to do the same today my friends! xox

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 na├»ve (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.

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’ ;)