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’ ;)  

Tuesday, 27 October 2015

In Pain Sight

One of the hardest things to do is define pain. Yet it’s a common aside in living with a chronic illness. It’s also vital in many cases in aiding medical professionals. They need to know the depth of our pain in order to establish how severely (and urgently) to treat us. You’ll be asked to describe pain; rate it on scale of 1-10. Often an incredibly problematic undertaking as it can be so changeable from one minute to the next. Frequently indescribable. When you are in the midst of it you can think of little else other than breathing through it; surviving the next wave.
Over the years I’ve found a variety of ways to vocalise my pain. It becomes a challenge, a game-show where there are no winners:
Nothing feels like it’s in the right place. Awkward, uncomfortable. Unnatural.
Stomach feels like a tornado, spinning, picking up everything around it and throwing it somewhere it shouldn't be.
When you cut your finger then eat a salt and vinegar crisp? That, but in my intestines.
Pain can frequently be hidden under a myriad of other, more immediately troublesome symptoms, such as fatigue, nausea, feeling faint. It can hit more severely as those symptoms improve. Like ticking of the most depressing list in history and finding you've still forgotten the thing RIGHT AT THE TOP. It can feel intense, overwhelming. It can mess with your head and make you feel like you are losing you mind. It can endure and impair every bodily function. It takes no prisoners and gives no relief. It can make you cry through sheer hopelessness and frustration.
Where do you rate that on 1-10? 11?
(Side-note: The first time I said ‘11’ when a nurse asked how I’d rate my pain, I followed it up with a terrible Spinal Tap joke then collapsed in a pool of my own vomit. Apparently. I don’t remember – I was in in pain). 
When you live with a chronic illness you’ll find a LOT of people will ‘question’ your pain. Doctors, nurses, family, friends, employers, even pharmacists. They all want to know you’re not ‘faking it’ or exaggerating. They want to know you aren't trying to take an overdose; trying to get out of work; trying to seek attention – a rare few will want to know you are TREATING YOUR PAIN EFFECTIVELY. Which is GREAT. So many times since my diagnosis I've felt ashamed in asking for help with my pain. 
At the very worst I was in hospital and lasted a good 6 hours on the mild concoction they’d given me for the burning in my bowels before I literally couldn't stand it. I could move, couldn't stop sobbing and was using all my energy not to scream and wake the pensioners I was sharing the ward with. When the nurse finally responded, I had to beg for pain relief which was met with a sigh and a raised eyebrow. I was tarred with whatever brush she wanted and it felt AWFUL.
It also made me acutely aware never to doubt my own pain and certainly not to deny it. I know my own body, and I know when something is wrong. Any raised eyebrows or sideways glances from others are irrelevant. It may make my face redder than a field of poppies against my will when my pain is questioned, but it won’t shame me into not properly treating it.

If your pain is an 11, or even if it’s not - you don’t have to tolerate it. And you shouldn't.

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. 

Wednesday, 21 October 2015

Blue is the new Black

I’ve read a great deal over the years on how depression makes you feel. From huge tomes by great authors on how the mind affects the body, to in-depth health articles from medical professionals, to the banality of a Minion/Marilyn Monroe-themed ‘inspirational’ quote on Facebook. The push in these day to day quotes is always that physical and mental illness is always something you should ‘fight’. But what if your body and mind are too exhausted?

For me, depression comes in many forms. It washes over me like waves with varying degrees of force. Sometimes the malaise passes pretty quickly and others it lingers for days like an un-emptied litter tray.  It’s a feeling of almost ‘nothingness’. I don’t want to do or even say, anything.

Everything is a chore. Communicating with the people I adore is tiresome.

I’ve heard depression described as ‘feeling as though you are walking through treacle’; but I’m not sure I agree with that. Mainly because EWW imagine that? Your shoes would be ruined and your feet would stink. But also because for me, depression is more about my inability to function in often the most banal of situations. Talking about last night’s TV to a colleague can become a mammoth and seemingly utterly pointless task. I don’t want to do it, and why should I have to? Do I have to wear a badge that says ‘I am feeling anti-social today please do not approach’? Because I’ll make it, I will, don’t push me, I’m one chat about Emmerdale away from buying a badge maker.

The other side of that anti-social coin is really that I’m not anti-social at all. In fact it’s physically painful when I become aware of the way I am acting. I don’t want to shut myself off, or be alone. But I am frequently powerless to change that. Or at least that’s how it seems. I don’t even have the energy to explain all of that when I’m in the midst of it.

My Mum once told me she ‘had the blues’. That’s one I favour too. It’s melancholy and expressive and doesn’t shy away from it; it just seems to lessen the worry for those around us. Something that is important, as although we feel all the love we did before we ‘got the blues’, sometimes we can’t express it as we once did. Colour changes, and at some point the tide will go out and the waves will dissipate.   

I don’t try and torture myself trying to find a cause for it anymore. I don’t blame having my heart broken by finding out George Michael is gay, a harsh word said in anger with my beloved, I don’t even blame my cat choosing the lap of my partner over mine. I don’t study my own behaviour and internally batter myself over the head for it. I don’t shy away from facing it, and I hide when I have to because that’s OK too.

I focus on what I now know for sure and from experience: it will pass

Friday, 16 October 2015

Sunshine After The Pain

Sometimes it’s hard to be a patient. Giving all your love to just one pan.

It’s often difficult to see the bright side of things that can be so intrinsically negative. 
Lately I’ve been trying to focus on the good and get a jump start on the bad; pre-empting aspects of my condition I know to be negative with what may effectively end up a positive. 
This isn’t easy, and it’s not even necessary either – but for me it often helps me see past the fog of disease, and focus on what good I have in my life. 

The other day I felt so fed up I wanted to hibernate. It’s really cold here now and my joints ache, my arthritis has flared, everything hurts from my toes to my hair and my Crohn’s is pretty much joining suit. Never one to be left out of a party is Crohn’s! So instead of wallowing in self-pity I tried to do things I knew would help – hot baths to ease my joints, cold compresses on my sore knees, pain relief when I needed it and not when it was too late and I’d become desperate. Look, I went hog-wild and treated myself to some painkillers on a school-night because I’m not just Born With It AND Maybelline, I’m also Worth It. Don’t let anyone ever tell you I’m not the life and soul.

So in the spirit of looking on the bright side and the importance of self-care, here I have handily compiled a (tongue firmly in cheek) guide to seeing the flip-side of illness:
1. “I can’t walk very well today because of my painful joints and arthritis”

Have a seat! Seats are great! So are couches and floors! Even better – LIE DOWN! In a bed!
2. “My medication is giving me cold sweats”

Your body has its own self-cooling facility! You are the envy of people from hot countries and cheap hotel rooms without air-con everywhere!
3. “I feel sick”

But think how good you’ll feel and LOOK when you don’t!
4. “I can’t stop rushing back and forward to the toilet”

Enforced fitness! AND maximum time to read books and catch up with your friends via your mobile telecommunication device from the comfort of your porcelain throne!
5. “I really wanted to go to that party and now I have to cancel”

Who likes parties anyway?! You’d only end up in the kitchen talking to a drunk bore while absentmindedly gnawing on a chicken wing. Plus, they NEVER play ABBA, it’s pointless. (Also think of the money you’ve saved on a gift!)
6. “I’m so tired”

You are an adult, which means you can go to bed at 8pm without fear of judgement! If you want you can go to bed anytime! Just not at your desk. Or at the bus stop. Or crossing the road. But otherwise, get to bed!
Ok so there you have it, just a snippet of some of the great ways you can keep on top of those illness blues. Feel free to use any of these when you need to! You can also print this out and post it on your fridge if you like, for those moments when you need a wee reminder that the sun will always rise tomorrow, and so will you.

(Side note : You are all very handsome and lovely for reading my ramblings all the way to the end and not subsequently sending me hate mail and if it wasn’t for all the restraining orders I’d marry you all in a Mormon ceremony with multiple bathrooms xoxoxoxxx)

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.

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. 

Saturday, 10 October 2015

The Woeful Network

I think I first realised I was hooked on social media, when I woke up one morning and looked at my beloved of over a decade, lying peacefully (a rarity) beside me. He looked like the love-interest does in films, handsome, sleepy and all covered in stubble. Eyes perfectly closed and forehead not even doing that frowny-thing that foreheads often do when deep in sleep. He was almost smiling in his slumber; a shrewd curl of the lip that looked almost mischievous. In hindsight that was probably just gas.

Anyway, I glanced at this image of my beloved and took a snapshot in my minds-eye. Then, almost instantly, my hand darted to my phone. My phone situated under my pillow. In an almost panic like state I couldn’t find it. I rummaged in the sheets, clambered across the bed and emptied out my pillow case like a maniac.

Then I saw it light up - it was under his head.

What a dilemma. Did I wake my sleeping boyfriend simply to satisfy my curiosity? Yes, yes I did. Because I wasn’t just being nosey, that light might have heralded a text from my Mum to say my Dad had fallen down the stairs. Or I might have missed my alarm and I’m now late for work. Or perhaps I’d received an email stating I’d won the lottery that I’d forgotten to play. All of these excuses and a million or so more darted through my head in order to justify my utter desperation to get a hold of my phone.

When I’d manoeuvred my way under my sleeping partners cranium (which is no easy feat let me tell you) to procure my phone, I proceeded to check for texts /emails/ Facebook/ Twitter updates at an alarming rate. I quickly established the reason for the phone having lit up was due to me having received a message about unclaimed PPI. An instant DELETER, and a shameful waste of effort on my part, which could have resulted in the waking-up of an understandably grumpy man before his alarm.

So what was this obsession with exhausting all outlets for news, gossip and contact with the human race before I’d barely awoken?

Well I’d say it started when I became ill.

I was spending protracted periods of time in hospital and my phone was often my only outlet for human contact; and a welcome distraction from the misery and fear around me. I was often admitted without having time to plan ahead, and would be there for hours or even days before anyone could gift me with their face-to-face company, biscuits or magazines. So my phone became my mini-companion. My reference point for all the scary stuff I was facing, and my link to the outside world. Yes, I am well aware how unbearably SAD and UNCOOL that all sounds but then I’ve never been ‘cool’. Unless you count that time I had hypothermia? See, even that joke was painfully un-cool.   

The truth is, social media, and all the devices we use to access that world, can be invaluable to those with chronic illness. We need to feel part of the outside world, even when we physically can’t be. We want to maintain our relationships and keep up to date with the entire goings on around us (however mundane), because we already feel like outcasts a lot of the time. Time slows down when you become ill, (not literally of course, I’m not an idiot), but life seems to speed on around us and we often feel isolated and behind. Keeping in regular contact even from a far, can be vital for our mental well-being.

Now I am less preoccupied with my mobile telecommunications device. I still get in a mild panic if I misplace it, but that’s mainly because it costs a lot of money and has my reminders to buy Nutella on it. But I still feel a comfort having it with me. It’s a safe place. It has easy access to all my friends and family. It allows me to carry all my favourite people with me in my pocket. It has all my call-in-a-crisis numbers in it and my emergency contact details for when I inevitably become ill again. It’s a reassurance now rather than a compulsion. Something we all need when we are professionally sick.

Plus did you know you can Google my blog and/or pictures of kittens in bowties anytime?! DAY OR NIGHT! The internet really is an INCREDIBLE PLACE. 

Wednesday, 7 October 2015

Crohn-er of a Lonely Heart

Sometimes I can't believe how much I love cats. I feel a painful pang in my chest at the mere idea that some cats might be lonely in the world. That some might have no one to give them treats while we watch CSI repeats together. No one to feed them half of their dinner then go hungry. I can't bear it. I can't even see those adverts about cats in need for my uncontrollable sobs. I love them.

But what does all this cat chat have to do with bowel disease I hear you cry. And well you may as I've gotten so sidetracked talking about wee cats that I'm not sure I remember myself... Ah yes. Loneliness.

The reality in living with a chronic illness is that there really is no amount of sugar-coating that can make the feelings of isolation easier to stomach. It can be hard to go through this alone. Relentless and utterly exhausting. Even if you are surrounded by loved ones it can still strike. They don't go through what you go through so essentially you are still 'alone'.

Chronic illness can change you: make you afraid and anxious, and too nervous to ask for help. But it doesn’t always have to change you for the worse – it can open your eyes to what you truly want out of life. Having the prospect of life taken from you encourages you to see things with a clarity most people aren’t afforded. You are lucky! You realise you aren’t shackled to those people who bring you down, or to a job you hate; and that it’s only you who can make the changes in your life to make it more than just ‘bearable’.

Being ill can be (and often is) your first thought when you wake and your last thought when you go to sleep. Not very romantic is it? It can overshadow anything seemingly good in your life, so it really is vital you both take the time you need to heal, and then try to live your life to its absolute fullest when you are well enough to do so. Otherwise what is the alternative? Giving yourself over to misery and loneliness? That’s not for me thank-you very much.

Reach out and ask for a friend when you need one. I for one have a lot of life still to live, and a love to give and I don’t intend to hold back. There are approximately 600 million cats in the world and I’ve only got a few decades worth of petting left in me. Time really is of the essence.

Saturday, 3 October 2015

Crohn Star

I feel great today. I feel ‘well’. And I’m not even being sarcastic.

I’ve had a rough few days; loaded with the cold and pestered by migraines and last night a spontaneous chicken korma got the better of me, leaving my stomach swollen to the size of a heavily pregnant, but surprisingly alluring, elephant.

Physically I’m still utterly exhausted. Constantly blowing my nose, coughing up my lungs, a kidney and a lasagne I ate in 1992, but I feel better.

In the past year I’ve been quite badly affected by anxiety and depression. I didn’t realise any of this until it was pointed out to me by people who are medically trained/have half a brain cell. It’s never been something I’d considered in the early days of my illness; that my head would misfire in the same way as my body does. But it happens. It happened to me. It’s happening to me.

For a while now, and much to my own chagrin, I’ve hated my body. I’ve tried to pretend it doesn’t matter to me that I’m scarred and bloated, that my skin is porcelain and speckled in syringe marks, but it does matter. Because although I don’t care if YOU don’t like it – I care that I don’t. It worries me when I begin to disgust myself, because it means my disease is winning.

I’m generally pretty positive, and try to maintain a positive outlook on my illness (and my appearance), but being diagnosed with depression made me sink lower into self-hatred. I felt worthless and pointless. I didn’t care about myself. I’d past the point of being pro-active and slipped into a version of browbeaten acceptance. Everything I’d written, about how to live despite your illness, seemed embarrassingly hypocritical – I wasn’t doing that so what gave me the right to profess the same to you?

So today I’m enjoying the fact that those feelings are at bay. I feel happy and confident and attractive. I feel loved and valued. And I value myself. I’m a few months into my anti-depression medication and a few months into my Infliximab treatment. I don’t know if I still feel ‘depressed’ – I suppose I do from time to time, as many of us do. But my treatment is working and my mood is lifting.

I don’t feel hopeless I feel hopeful.

I feel positive about the future and happy to have such incredible support, tangible and otherwise.  I hope you all feel great today too. If you don’t; you will. Remember, like eye-patch aficionado Gabrielle once said, ‘Dreams can come true’, and I know that’s accurate because Jon Hamm is now single.