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How to cope with Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

Endometriosis is an inflammatory chronic condition. Unfortunately there is no complete cure, and some things will work better for some people and not work at all for others. However, here are my own tried and tested coping techniques for this incredibly painful condition.

🍵 green tea has been found in some studies to have a positive impact on those with endometriosis 

❤️‍🔥 everyone knows how comforting a hot water bottle can be, and it is a reliable aid for any cramp

⚡️ I CANNOT begin to express how much of a life saver my tens machine has been! This post is not sponsored by @ovira but they are a wonderful company I use my ovira tens machine every day, it helps my chronic joint pain as well as my Endometriosis pain. Shop for your own here!

☀️ I am sure many of you are aware how beneficial Vitamin C, Magnesium, and Vitamin D are in general, but they are also wonderful for Endometriosis! Starflower oil is another supplement that many find helpful.

🍣 eating a diet of nuts, seeds, avocado, fatty fish and other anti-inflammatory food can lower inflammation and strengthen your immune system! 

💦 drink more water! A reminder we always need, or at least I do!

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

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Medical Sexism & Endometriosis

Don’t know what Endometriosis is? Check out Lifting the Lid on Endometriosis

Painful Periods are NOT normal. If you have periods that are so painful that they affect your daily activity, go to your doctor urgently and do not give up until you receive help and support.

The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men.

The Guardian, Marie Claire, Harvard

Pain in women is not taken seriously. Fatphobia, racism, classism, poverty, and more, all contribute to injustice in the healthcare system. But when it comes to the medical sphere, sexism is perhaps the most predominant form of discrimination. The medical concepts of most diseases are based on male physiology, to the extent that women are dying because some doctors treat women like men. There is one thing that would save the lives of so many with Endometriosis: Listening to female patients. 

When I was diagnosed with endometriosis last year I was told it had been growing for up to 8 years. I had debilitating periods my whole life, to the point where I couldn’t attend school, couldn’t move from bed every month. I was told that Ehlers Danlos Syndrome makes period pain worse, so thought I just had to deal with it like every other symptom. Due to gaslighting from doctors and teachers, I did not take my pain seriously. Constant pain is my normal, so I couldn’t tell the difference when the pain was fatal! Please don’t make the same mistake I did. Endometriosis is extremely serious, and many people don’t realise they may have it.

If you have endometriosis or any other chronic condition I want you to know this. You are not overreacting. You are not weak. You are not lazy. You are coping incredibly well with something that makes it nearly impossible to get out of bed each day and choose to continue living. 

❗️When I say women/female I mean the literal definition, those with female anatomy. This includes trans men, intersex people, and nonbinary people. 

Image Description: The words ‘Part of being a woman and dealing with reproductive health is being treated like you’re not human. Is being treated like you’re a robot, and you’re supposed to wake up every day and get over it – Halsey’ next to a drawing of Halsey

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International Women’s Day

March is Endometriosis Awareness month, one of the most painful conditions in the world that effects 190 million women worldwide. Learn more about it here

Here’s to taking up space. Here’s to using exclamation marks in emails without shame. Here’s to loving things so much you can’t not talk about them!!! 🥂 

Feminism isn’t about the ideal of who you should be, or about taking advantage of the opportunities that women before us didn’t have, it’s about doing whatever you want to do because you are able to choose 🎠 

Today, #InternationalWomensDay , is about raising awareness for the fact that SO MANY women still don’t have a choice. So if you do, choose to advocate for all women’s rights, not just those who look like you and share your experiences. But most importantly, choose rest, choose joy, choose looking after yourself 💛

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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!!!