Friday, 28 March 2014

Talkin' 'bout my Gut

It's been a great week for Crohn's & Colitis awareness in the UK and beyond. 
Here in Britain we've had a campaign on social networking urging IBD patients (and their friends and families) to #GetYourBellyOut. A pretty nice idea, and any method of making more of the wider world aware of our illness the better. 
This idea has followed swiftly on from the recent #NoMakeUpSelfie campaign to raise awareness for Breast Cancer Care. This involved women all over the globe removing their make-up-coated-masks and baring all for the camera. Many were undeservedly critical of this trend as it was seen as overly self-serving ('look how pretty I am even without make-up!') and many couldn't see a link with the cause it professed to support. However after only 6days worth of natural faces all over social media, over £8m was raised for Cancer Research UK. An amazing achievement. Whether the majority of these women were 'attention seeking' or not, they put their hands in their pockets for the women they love and that's what ACTUALLY matters. 
Now the preceding campaign for IBD Awareness has taken it's inspiration in baring flesh but this time it's in the relevant area, (and occasionally slightly more graphic). Men and women have been posting photographs of their unsheathed stomachs and urging the public to donate towards finding a cure for our as yet incurable, illnesses. Many of these men and women have had surgery (some several times over) and many are living with stomas or bear the scars of a reversal. All of those people are incredibly brave in my eyes and are showing the world that our 'invisible' illness isn't always so well hidden. 
So in the spirit of charity, and tummy solidarity, here's my little diseased tum too.

3 years and 3months after my first surgery whereby I had part of my bowel removed to save my life. My scar serves as a reminder of how vital that operation was and how ill I truly was. Now I'm more confident and accepting of my changed and ever-changing body. Because it has to be this way. There's no room for vanity with disease and I've certainly found my mirror more forgiving when I'm healthy than on deaths door. 

So please donate what you can by either hopping onto the JustGiving page set up by the campaigns founders:

Or see below on the various methods you can donate to Crohn's & Colitis UK:

Help keep my bowels in the manner to which they are un-accustomed. Or, preferably, help us find a cure x

Wednesday, 26 March 2014

Counselling Diary - Take 1

Here's my first 'Counselling Diary'. I started a short burst of counselling sessions today to help cope with the emotional and mental aspects of dealing with my Crohn's Disease. I thought I'd accepted having an incurable illness but I've not quite gotten there yet. But I know I will! 
(Apologies for the flashing lights my cat was sitting on the remote) x

Saturday, 22 March 2014

I'll have a Bowel please, Carol

I spend a lot of time preaching on this blog about the wonders of talking about your illness. I relay how important it is to open up about how much the condition affects you because it's 100% times healthier than bottling everything up and feeling isolated and alone. 
However it's taken me this past year to finally realise I don't actually take my own advice. I talk about Crohn's a lot of course - on here, on social networking and I try my best to help and advise others with it. I tell my friends and family how I feel and explain what's happening with my treatment and what's next. But I don't TALK. I give them what I think they need, or want to know. I give them part of the puzzle then beat them up in my mind for not having the psychic ability to work out the rest for themselves. 
Basic communication really shouldn't be that difficult, but when it comes to telling the truth about my illness it's like I'm utterly stuck a lot of the time. 
When I was first diagnosed the idea of talking to someone outside of my friends and family was put to me and instantly dismissed. Why would I need to talk to anyone? I can cope with this on my own, and besides, I have everyone around me to listen if I need them. 
But how do your loved ones listen if you don't actually talk? 
They are just left in the impossible position of picking at the scraps of what emotional morsels you do offer and trying to create something tangible from it. Unfair and absolutely no use to either of us. 
So the gist of it is I'm going to see a counsellor. Not because I think I don't have the support of everyone around me - but exactly because I do. I want to give them what they deserve - to know the truth about how this is really affecting me. I expect everyone to be completely honest with me yet I'm only just realising I don't give them the same in return. This is really hard and a few months ago I probably would've been ashamed at my lack of apparent backbone but I know now this isn't my failing. It's just me trying to be strong. 
Crohn's, and any long term illness for that matter, is an absolute challenge to live with - physically and mentally, and I should never underestimate how much this affects my mental health as well as my body. The frustration I feel mainly lies in knowing that when someone kindly asks how I am and I tell them, and the conversation ends, they go away and carry on with their life but I'm still stuck with it. That's absolutely not their fault and it's unchangeable. There's no feeling of 'offloading' because Crohn's is there 24/7.  
However this next step is a positive one; I want to be able to talk openly about how hopeless I can feel without feeling pathetic or worrying that I'm upsetting everyone around me. I don't want to be embarrassed by the fact that sometimes I feel like a worthless girlfriend/friend/daughter/employee/cat owner. I know none of those feelings are truly the case, but I also need to accept that I feel that way for a reason, and acknowledging whatever those reasons are is the only way to put it behind me. I certainly can't rid myself of my illness but I can learn to share some of the burden with the people who love me and want to help. I may not be Loreal but I'm definitely worth it.

Sunday, 16 March 2014

Tears for Rears

Yesterday I cried about 5 times. Not bad going considering the amount of mind altering medication I’m on at the moment. It’s not a particularly bad thing. It feels good. Without sounding like a lunatic I like a good cry. Sometimes life is unbearably frustrating and you need an outlet. I don’t take drugs (excluding prescribed ones obviously) and don’t drink massively, so occasionally weeping into my cat’s fur solidly for prolonged periods is essential.  I jest of course. Well, only a little. The first part was true – I do like a blub. Medication and generally suffering from a chronic illness can all affect your mood and often I find myself so angry/sad/happy/grumpy all at once. All INTENSELY so.
I’m in the midst of writing a book about my disease. Last night, a Saturday night to be precise, I found myself in the unfortunate and rather embarrassing position of listening to ‘Crying’ by Roy Orbison on repeat whilst gently weeping over previously penned sentences about how awful the past few years have been. All hilariously laughable to me now, and even at the time really, but I’ve accepted now that I need to give into my emotions from time to time. It’s not a lack of character to admit you feel weak. In fact if anything, it shows how strong you are. Reaching a hand out to ask for help is one of the most intimidating things you can do, and I’ve struggled to accept that I need those hands over the last few years. If you ever ask me how I am I ALWAYS say I’m fine. It drives people crazy. I’m never or at least rarely ever; fine. It’s just 100% easier than complaining or having to relay the same old story. No one who loves me wants me to feel anything less than fine and I don’t want them to be forced to share my pain. Right wee Mother Theresa eh?  
In all seriousness, anyone who is having a hard time needs someone to talk to. Even if that person can’t help – it often a massive boost just talking outside of your own head about how you feel. I know that my partner, friends and family can’t cure my disease.  Much as I know they would like to, and often simply hearing that is enough. I know that when I feel a little better I can laugh heartily at the times when I felt utterly pathetic. It’s disheartening to know that these moments will happen again and again, but also a little reassuring. I don’t want to pretend anymore and I don’t want to feel alone. No one should ever have to. I have to suffer from this disease but it also affects everyone I love, so why shouldn’t I let them share in the good and the bad with me? Talk to someone about how you low you feel when you need to and let them help. Someone around you always wants to.
And if all else fails, buy a cat and a Roy Orbison cd, and OWN Saturday night.

Sunday, 9 March 2014

Signed, Sealed, Diseased (I'm Yours)

Dear Crohn's, 

Firstly before we begin, I'd like to remind you that under no that uncertain terms, you are the biggest, and most relentless interference in my life. You are the single most infuriating thing I've ever experienced, (at least since my corner-shop stopped stocking the big jars of Nutella anyway).
I'd love to be able to say I was fine before you came along but I suppose I really wasn't. I was all askew and I suppose I always felt my body wasn't quite like other bodies. Something's just didn't seem to make sense. I don't mean to blow my own trumpet, but I had a decent figure, was fit and active and occasionally could look at myself in the mirror for more than 60 seconds without wincing. I took endless photos of myself and my loved ones and had lots of fun in amongst all the hard work. 
After you came into my life the photos dried up. The mirror and I became distant, and the fun was swiftly replaced with completing endless crosswords in-between all the vomiting, wrapped up tightly in NHS sheets.

I hated the sight of myself with you. You destroyed my body and mind. For a while at least. You left me with scars and unrepairable damage. You caused me so much stress that I suffered constant pain and continuous pounding headaches. The medication you insisted I take made my hair fall out, gave me ulcers, made me pile on pounds or shed weight almost overnight. In the moments I watched these parts of me drift away I felt less of Me. Somehow less of a woman. 
You were the worst relationship I ever had. 

But we must persevere. It took me a long time to face the fact that I was never getting rid of you, but when that finally sunk in my attitude towards you changed almost overnight. 
I realised I had to accept you as a part of my life and begin to let us try and live in harmony, rather than trying to fight you constantly. It all became just too tiring. I didn't like the idea of you taking away my independence, so I eventually resolved that I didn't have to let you. I had to take a bit of the control back. I'd let you have the upper hand for too long. There was no equal footing in our relationship because you held all the aces. You would decide what we did when we did it, whether or not I went to work and you hospitalised me at the drop of a hat. You were toxic for me. 

Now I know you are with me for life it's a little easier. I treat my body with the respect it deserves. At least until the cravings for mashed potato hit, then all bets are off. I realise I'm only punishing myself in the process of trying to fight with you. I have to take care of myself because you won't. I have to ensure I do my utmost to keep myself as well as possible and for the most part I do. Life gets in the way though and it's a struggle juggling you and work/a social life/home life. You still interfere a LOT of the time, but when I can continue to be the 'old me' even with you tagging along, I absolutely relish it. 
I love and enjoy my life DESPITE you. Now who has the last laugh? 

Yours always, in Nutella, 

Kathleen x

Saturday, 1 March 2014

My Flare Lady

I feel one of the main reasons Crohn's Disease has gone unspoken for such a long time, is because it's not an 'attractive' disease. Let's face facts, no one particularly wants to talk about bowels and bums, and what comes out of them. It's not sexy and it's certainly not alluring. 
It's also a vicious circle when you begin to conceal your condition from the rest of the world, and allow yourself to feel nothing but shame and embarrassment. 
Don't get me wrong, when I first found out I had the disease I was mildly mortified. My family is not one for openly discussing the ins and outs of the human body in great detail so I found it incredibly hard not turning 50 shades of red in the doctors surgery. I suddenly found myself having to discuss my stool, my anus, my diet and perhaps worst of all (depending on your opinion) - have random men stick their fingers in my orifices without buying me a drink first.

As a woman with all the womanly bits and bobs, it's important to feel attractive. Not in a vain 'look at me' way; but for myself. As a young woman I was a very late-developer and was mildly obsessed with growing up: when I get boobs everything will be fine. Boys will like me and the 'cool' girls will respect me. 
Depressingly, both of those wishes came true. When I realised I was suddenly appealing simply because two pieces of flesh had formed on my chest it was a jolt from the blue - why was I interested in impressing people who up to now hadn't given me a second glance? Pathetic really, and stood me in good stead for the rest of my life. 
Now I was suddenly a fully fledged woman with the baby-feeding badges to prove it l, I was determined to be more than just the wrapping. I stuck in at school and college and worked 3 jobs to get me through. I shunned men who were only after 'one thing' and I pummelled sexism into significance in the kitchens and bars I worked in to earn my keep. 

When I consider what it means to be a woman I see strength, independence and beauty. You don't have to look like you've been dragged through a hedge backwards to consider yourself a feminist. Where in the rule book does it tell you you are somehow less of a woman if you like wearing make up and grooming your lady-bits? 
I love women. Especially the women I am so blessed to have around me. My Mother and my Grandmother are two of my all time favourite women - inspiring and independent - my Gran lived a long and happy life after her husband passed and always looked immaculate. She was hilarious and compassionate and passed all of that and more onto my Mum. 
My friends are a beautiful pick and mix of all my favourite qualities in humans - women who make me incredibly happy everyday, and very proud to have a vagina. 

But what does it mean to be a woman living with a chronic illness?
Well it means you may have to work that little bit harder to look at your best; mainly because the last thing you often feel like doing is painting your face when you feel like death is tapping his scythe at your door.
It means you have to embrace your illness, not hide away. Learn everything you can about your condition and hone your knowledge to become as healthy as possible. 
It means you have to be open, and honest, and never, ever, ashamed of your own body. 
Really that goes for men as well as women. Because after all, we may have different baby-making and sexy-bits, but we all do a number 2 in the same way. Just some of us perhaps more than others.