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Endometriosis

The NHS nearly killed me. The NHS saved my life.

I don’t know how to talk about this.
Unexplained period and bowel pain for my entire life. An 8 cm ovarian cyst. A test with a result. Relief spiralled into Gaslighting. A private blessing. A hidden complication. And me.
Waking up from a major complex surgery without painkillers, intolerant to every medication they tried, throwing up for hours with stitches, unable to move…

I can’t comprehend the glass window I look through. Memories shatter and visit me in fractured pieces puncturing my heart. How could I treat myself like that? How did I manage to cope, and not only cope but edit podcasts, live and love and function with this incredible pain?! I even became a freaking politician during all of this! (Hi, I am a town councillor now, vote for me when I apply to be an MP won’t you?)

A list of things that kept me sane: Lin Manuel Miranda, Taylor Swift, My mother, the person who taught me strength.

How could I be such a hypocrite and forgive myself for it… Will I ever forgive myself? Another diagnosis. How many does that make now? The doctor said I had been dealing with Endometriosis for years. The doctor said it was shocking my local hospital had tried to make me wait until the end of September for a consultation, not even the operation. The doctor said they should have operated when the first found it 6 weeks ago. What a wild thing, to be believed by a doctor.

And the heart breaking dichotomy that always strikes? The NHS nearly killed me. The NHS saved my life.

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Chronic Pain Management

Mangement Strategies? Tips? Help?! For what? Strategies for how to explain to people that I can’t do today what I did yesterday? Tips for keeping calm when a doctor offers to chop off your leg (yes that actually happened) Help for not crying all the time over how much pain you’re in?! MANAGEMENT STRATEGIES?! What do you mean?! There is not one single strategy let alone plural that can manage all these terrible, difficult situations- oh wait. Yes there is.
Breathing.

The only management strategy for anything in life is working on the foundation that sustains us, our breath. It is also the only thing that gives me a chance to get on top of my pain. For the first five years, pre-diagnosis, I had no idea about breath work. Truth be told, I’ve only really become properly good at it since starting yoga this year. It’s a complete game changer. Our natural response when we are put in pain is to tense up, to freeze, but this does the opposite of what we want, rather than stopping the pain it makes it worse. Particularly for EDS, if I can feel a joint sublux, my reaction is what makes the difference between it being out of place several hours or several months. If I can focus on my breathing and relax the joint, I give it a better chance of shifting back in. If I tense up, it is more likely to get stuck and swollen. Equally, if I am to have any hope of not losing my temper in a doctor’s office, I need to rely on my calming breaths. If you have no idea what I’m on about or are curious and want to know more about breathing- do you know how to breathe, really? Do you?- listen to ‘Tranquili-tea’.

Management strategies for POTs and seizures include sprinkling salt on my tongue. It’s a blood pressure thing, I think?

A flare up is a term for chronic pain/ongoing symptoms becoming worse: flaring. My flare ups can look like me being silent (very unusual for me as I’m sure you can imagine!) because I’m so exhausted or not being able to move due to pain (but mentally I’m okay just frustrated-feeling-trapped-with-a-brain-that-wants-to-do-things-my-body-can’t!
On my worst days, it’s both.

Flare ups can be caused by me moving too quickly and subluxing something, or not moving at all and still subluxing something, or subluxing something by moving slightly! I sublux at least twice a day, if you’re not sure what subluxation is, it’s essentially a half dislocation, a joint moves out of place but not enough that you can slide it back in- instead it gets stuck and then swells up so it can’t move back! It’s excruciating! It can last from ten seconds to six weeks, sometimes even longer and it’s pretty annoying and agonising! Aside from subluxations, standing for too long, walking too quickly or for too long a distance, climbing stairs, a seizure, doing too much exercise, doing too little, going to a party for too long or going to a shop where the lighting is too bright- all these can cause a flare up. The one thing that is certain to cause a flare up? Periods. Due to higher levels of progesterone being released, joints become even more lax and thus prone to subluxation.

What does a flare up look like for me, you ask? It looks like nothing.

It looks like any healthy 19 year old girl. Because Ehlers Danlos Syndrome is invisible.

The one tool I wish I was better at using is kindness. Reminding myself I’m on a flare up and that I shouldn’t beat myself up for not doing enough. I usually forget this. My hip will sublux one day and at the end of that week I will think ‘My goodness! Look at how messy your room is! What on earth is wrong with you how lazy can you get-!’ and then, if I am sensible enough to tell them how I’m feeling, my mother or boyfriend or brother will remind me ‘Hey you spent the week in bed in tremendous pain- chill out!!’

Now you might be thinking ‘How can your room get so untidy if you have spent the week in bed, Blossom?’ Well, friend, it’s a skill, and I can’t let you in on all my secrets.

So, the tool I wish I would use more often in a flare up is kindness. If this resonates with you- struggling to be nice to yourself, having high expectations and standards, etc- I’d like to take this opportunity to recommend one of my favourite podcast episodes Relativi-tea I hope it’s helpful.

MY TOOL BOX
– Ice/heat packs
– @Lush Wiccy Magic Muscles Massage Bar (for headaches and muscle pain)
– Magnesium Salt Bath
– Body Pillows
– Comfort Food (hence the lemon meringue pie which I definitely am entirely allergic to but I like the photo, it goes with my theme, and it would be my favourite dessert hehe)
– Cuddles with pets/people
– Distractions

Feel Good TV: FRIENDS, Avatar the Last Airbender

Feel Good Movies: Any Rom-com- I recommend Easy A and Crazy, Stupid, Love. A Studio Ghibli Film, my favourite is Whisper of the Heart. A good Pixar like Ratatouille or Soul
– A good playlist of boppy songs with relatable lyrics
– Gentle, modified, slow Yoga with Adriene on Youtube
– (No caffeine) Tea!!!

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The Gap Between Two Healthcare Worlds

Dominique Viel, founder of InvisiYouth, shares her story with us today!

‘When people find out I launched InvisiYouth Charity five years ago when I was 22, the follow-up questions tend to all fall into the categories of “How did you come up with a nonprofit supporting young adult chronic illness lifestyle?” or “You’re so young to run a nonprofit, how do you manage it?” or even “What makes young adult healthcare so different from pediatrics and adults?” If you look at it, the main theme stemming through all the questions around my philanthropy is a lack of understanding the young adult experience and what makes it one of the most vital times for an individual to be supported. 

I was a teenage competitive tennis player with a laser focus on the life I wanted to live, but one injury resulted into years without proper diagnosis and complicated treatments as my chronic illnesses began to take center stage. I’m lucky I have a supportive family that stood by my side through all the horribly challenging times, like my mom being at every doctor’s appointment. “This is your health and your body, Dominique,” my mom would say. “No matter how old you are, you have to remember you are the patient and deserve to be as active of a participant in your healthcare as you can.” 

It was her encouragement to always ask those “why” questions to our doctors when I didn’t understand or didn’t agree with a treatment plan that mattered the most as I began transitioning from pediatric to adult healthcare. When you’re in that 13-35 age demographic dealing with health struggles, you fall into the gap between these two healthcare worlds. You’re not dependent on others to make choices for yourself, but you shouldn’t be thrown into the deep-end of your treatment programs. You’re in the most critical time of your life, cultivating what matters to you, establishing your voice, and building your future life…but there’s no healthcare to specifically support you.  

That fear of being invisible in my own healthcare journey fueled my passion to build InvisiYouth Charity, a global nonprofit helping teens and young adults with chronic illness or disability (physical AND mental) to have the right lifestyle tools, virtual resources, leadership programs and empowerment to thrive with any health struggles. You’re never ‘invisible’ with InvisiYouth, but rather ‘invincible’ because this population has the best skills to adapt, conquer, and excel. It is my goal that every young adult has tools to know they are represented, validated and supported on their unique health journey.

My chronic illnesses have become my life’s teammates and no longer the enemy taking value away. I will always crave gaining knowledge and sparks of joy from my life and work. I wake up and go to sleep as a person with a purpose that happens to also have chronic illnesses. Each day I work to pursue my goals, make InvisiYouth better, and always give back so others can feel just as knowledgeable to thrive in their daily lives like I do.’

You can find more about this charity on their website or @InvisiYouth on Instagram.