Sunday, 17 June 2018

Endo Silence Scotland

Hello! Thank you so much for all the support with my campaign Endo Silence Scotland. 

Following my diagnosis and surgery earlier this year, I have made it my mission to smash the taboo surrounding periods, menstrual health and endometriosis. 

1 in 10 women suffer from this chronic, debilitating and indiscriminate disease. Let's not make it a dirty secret. 

Follow: @EndoSilenceScot for more updates



Thursday, 22 March 2018

Endometriosis | How I manage chronic pain

If you follow my social media you will know, I was diagnosed with Endometriosis a few months ago. Endometriosis is a debilitating condition that affects an estimated 1 in 10 women in the UK. The disease occurs when cells typically found within the uterus grow outside of the womb. These misplaced cells follow the natural process of menstruation and bleed in places where they really shouldn’t. These rogue, misbehaving cells can reek internal havoc, leading to long-term pain and (terrifyingly) infertility. My Endo is severe and has manifested in sticky clots which have clogged my fallopian tube, infiltrated the space between my womb and bowel and created several painful ovarian cysts (endometriomas). Not sounding great is it…

I don’t want to bore you with the medical chatter, but rest assured this disease really is ‘the worst guy’. What’s gone from years of awkward silence surrounding my unbearable period pain has transformed into constant chronic sickness, nausea, fatigue and a complete lack of sexiness. Endo has forced me to take time out from my university course and resign myself to weeks on the sofa while I wait for surgery.

If you’ve suffered chronic pain or patches of ill health you’ll know it can be hard to see light at the end of the tunnel. To shake yourself off and put on your positive pants. To give your body time to heal or, in my case, wait it out until you can get the medical care you so badly need. My life is on hold but it certainly isn’t over.

Here’s a few things I’ve found helpful whilst coming to terms with my diagnosis and what I’ve been doing to ease the pain in the meantime.  If you're going through anything similar i'd urge you to... 

1)    Read up about your symptoms and what to expect from treatment

Initially, this might feel like the last thing you want to do. Picking up a leaflet on your condition or exploring online symptom checkers to become your own Dr Google is scary. Arguably, at best this kind of D-I-Y life-coaching makes everything real and at worst it makes it, well, worse. You know what I’m talking about… The ‘all routes lead to death’ kind of Googling isn’t helpful to anyone. Personally, however, I’ve found absorbing useful information about my condition to be beneficial. I’ve tried to educate myself as much as possible about Endo. I mean, I’ve literally got the book. I have scoured through countless online articles, watched TED-talks, testimonials, set up e-mail alerts on the topic. I know my Endo, therefore I understand my body a little better and get where my symptoms are coming from. A combination of this and genuine discussions with my gynaecologist have helped me to feel informed and prepared for what’s to come from surgery and life. This education has helped me to balance reality and fear and to quiet unhelpful thoughts.

2)    Give your body some TLC

Chronic pain is a tricky bugger. It’s not like a spot that you can squeeze or apply ointment to. It aches and radiates across your entire body. It reaches and tingles in places beyond you problem area itself. For me, my Endo pain resides in my abdomen (duh), tension across my head, in my temples, rib cage and down my legs. It’s painful to walk, to change positions or to even stand straight. For this, I am on a hella-large dose of some scary pain killers. Alongside this, I attempt to take care of myself in additional ways. Seeking herbal remedies like Turmeric capsules and CBD oil to relieve pain and pepperment tea with ginger to calm and target inflammation. I've been treating my skin to some extra moisturising - rubbing coconut lotion over aches and pains to stimulate blood flow and help relieve pressure. It also smells great and leaves my parched skin feeling supple and cared for. As well as taking care of my body, I’m mindful not to neglect my face. For this, I keep moisturised and use Liz Earle ‘Deep Cleansing’ mask every other day. The Manuka honey helps to restore vibrancy, reduce dryness and makes you feel super fresh which is essential as fatigue and chronic pain can dry out your skin as well as your energy.

3)    Discover the power of heat

This isn’t rocket science. Sometimes when you’re doubled over in pain the only thing that can help to ease the ache is carefully applied heat. For the past few months I’ve rarely been seen without a hot water bottle or heat-pad glued to my stomach. It just works. As well as heat, the cold can help to relieve tension. When my migraine like symptoms occur, I reach for a cold flannel or cool forehead patches for release. It’s amazing how much the varied application of heat can soothe flare ups. It’s not a miracle cure, but it does help.

4)    Reach out online

This is really important. Being sick and staying home can mean losing touch. It can be isolating. You’re coming to terms with an infirmity that slows you down and keeps the door closed, but you are not alone. Since being diagnosed with Endometriosis I have turned to social media as a massive support. Women across the world are speaking out about their experiences with this disease: from Halsey and Lena Dunham to my neighbours in Glasgow. When scrolling through social media after my diagnosis I found a Glasgow based support group on Facebook. At every stage of my process from diagnosis to now I’ve leaned on these women for advice that they have gladly delivered and, in turn, helped them where I can! These networks exist across the country and are extremely helpful. Where friends and family can help in innumerable ways, sometimes a stranger, who shares your experience, can make more of an impact than you’d ever imagine. As women in 2018 we are privileged to share in this social network that can unite us and bring something positive from shared suffering.

5)    Try to stay inspired

This is the hardest one. In dark times, where you are faced with ‘worst case scenarios’ and full body pain it seems impossible to see any good. For me, life is on hold. I’ve not been able to get out the door to go to University, walk down the street without stopping or do near enough anything on my own. Things that used to give me relief and fulfilment seem impossible. Writing triggers brain fog and takes hours longer than it should. I don’t feel like singing. When I think about my Endo too much I think about infertility, about maybe never getting to be a mother. It hurts. The cure? I read testimonials, watch Netflix, light the candles, listen to audio books, pour over trashy magazines. I try to share my experience and hope that my story helps someone else to speak out about their pain. It’s a work in progress, but I’m determined not to lose faith in myself and to make good of my lot.

If you’re dealing with chronic pain, I hope this help.

If you know someone who has Endo – share this with them. Better yet? Toss them a heat-pad and hold their hand. 

This is hard and my journey is far from over. In two weeks time, I face a laparotomy and ovarian cystectomy. During this procedure my Endometriosis will be excised and I might get a shot at normality again.

Until then, solidarity EndoSisters. Thanks for your support and I hope I can support you too. 

KJ x


Sunday, 1 October 2017

Bohemian Dysmorphia | Got any symptoms?

When tuning into this week’s episode of ‘The High Low’ podcast I was taken with a particular sentiment. In amongst the glorious ramblings of Pandora, Dolly and special guest Rosie Wilby, D giddily diagnosed herself with the feeling of ‘Bohemian Dysmorphia’. Describing herself as existing in that unsatisfying limbo between who you are and who you’d like to think you are, Dolly coined the deliciously relatable phrase, AND I want to talk about it. 

For context’s sake, this episode featured a discussion about monogamy as a potentially tired construct. The cast raised questions about the viability of such common practices in a modern age that allows for so many variations of ‘normality’. 

Dolly’s omission, all be it totally tongue in cheek, is hugely relevant to so many of us today, so I wanted to take 5 to ponder what she was getting at. In explaining, she continued, ‘I really wanted to be polyamorous but I’m just naturally SO monogamous and that’s fine’. 

First up, the fact that the spectrum of accepted behaviours is widening can only be a good thing. Technicolour variations between people SHOULD be celebrated, embraced, coated in glitter, whatever, but where does that leave the rest of us? 

What the ‘High Low’ gals seem to be intimating is that, while it’s okay to be neither one thing or the other, It’s also okay to be you, EVEN if you seem a little vanilla.

Existing, as a twenty-something woman in a world where everyone seems to be either an online influencer, mega boss lady, fitness guru, life coach, book-writing, digi-savvy, pan-sexual, eco-warrior, mother extraordinaire, is it okay to be who you are when that person no longer seems all that interesting? 

Rooting through Instagram alone it’s pretty easy to think that sitting in your pyjamas watching Loose Women with a cup of tea on a Wednesday morning just doesn’t cut it anymore… 

‘When will I be interesting?’ – me, inner monologue, 2017. 

Scrolling through my feed today I came across something Alicia Keys had nicked off Pinterest. A cutesy post referencing the Japanese tradition of turning broken objects into works of art by repairing them with gold. Keys captioned the pic ‘We are a beautiful piece of a unique journey all our own… a special story only yours!’ 

But what if we’re not glued together with gold? What if instead, we’re just DIY projects held together with blue-tac or some dodgy double sided sticky tape or worse, barely adhesive Pritt-Stick coated with glitter residue from last year’s Halloween costume? What if there just isn’t a place for mediocrity anymore? 

Carmen Fishwick, recently posted an article on the Guardian online. The piece, entitled ‘beyond the selfie’ is a study of millennial behaviour. The report itself found that those who were most involved in Facebook were doubly likely to think other people’s lives were more fulfilled and all-around better than their own. This checks out, as ‘The Happiness Research Institute’ say quitting Facebook for a week could boost happiness levels and cut stress by up to 55%. After all, comparison is the thief of joy, and you KNOW that latte was cold by the time ‘baristachick02’ even got round to taking a sip. 

BUT, you get the feeling, don’t you? That sickening inadequacy that slides into your DM’s after a brief online binge. That knowingness that you’ll never be a virtual goddess or spokesperson for whatever and that the only #AD’s your profile is ever likely to feature are for tea bags and chocolate digestives. 

The pressure to be a someone in this generation is more intense and refined because there is so much choice: so many things we should be doing, so many lifestyles we could be adhering to. 

Dodie Clark released the video for her new song 6/10 this week. The song itself is beautiful, thank you Dodie, AND the lyrics are particularly poignant when considering this make-shift cultural diagnosis. Like everything Dodie creates, the production is delicate, with choreography that carefully encapsulates the essence of ‘not feeling good enough’, doing it (as you’d expect) in blaringly bright ‘Dodie yellow’. She sings: 

‘Is there pity for the plain girl?
Can you see the panic inside?
I'm making you uneasy aren't I?’

Dodie’s lyrics ask questions about self-love in this modern existence where, unless you’re hurling your own achievements at each other online, it’s easy to forget that you’re doing okay. 

Pics or it didn’t happen counts for everything these days. Our expectations for reality are constantly inverted by social media norms. 

Towards the latter half of my university career I only went to the library so I could snap a cute picture for Instagram from the stairs on the eighth floor #studyinghard. I printed out my dissertation purely so I could tag myself in a life event on Facebook, despite the fact the paper was entirely online submission #humblebrag. AND the other night, I had a strop with my boyfriend because he fell asleep before we could make bae-nana splits #forthegram. (I confess, this was a real millennial low, but you see my point). WE DO IT ALL THE TIME.

But, what qualifies as #goals anyway? Turns out, being average might not be sexy, but it’s real and it can’t be all Insta-sparkle, all boss lady all the time. You’re doing okay. Anyone can take a basic bitch coffee shop gram, get out there and change the game. Live a little. Be you. 

It won’t be boring. 

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