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mind, body & EDS

| living with a rare, invisible, genetic disease |

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But You Don’t Look Sick

Reflection on current struggles in life

Today has been one of those days where I doubted myself over a million times. The last few months I’ve felt this way for completely valid reasons. I’m not saying this for sympathy – I’m saying this for reality – to show you that on the inside I’m just like you. Yes, I may be smiling on the outside, but I’m not invincible. In all honestly, I don’t always have it all together and still have moments when I focus on the difficult parts of life.

Recently I’ve been hit with a lot of disheartening and disappointing news relating to my health (new diagnoses/more surgeries), my graduate job falling through which consequently meant my moving back to independent living in London didn’t happen – this domino effect has caused a tremendous impact, leaving me feel lost and full of grief.

It’s naturally re-opened a lot of insecurities I once had that I’d put to bed a long time ago through many years of CBT (cognitive behavioral therapy), trauma and pain management therapy. Truthfully, I’ve had a lot of days this past month where I’ve felt like I’m not enough. Where I’ve felt like giving up. When I’ve questioned myself and doubted my ability to juggle all areas in my life. I admit that I’ve found this difficult to comprehend because my ‘life plan’ has just crumbled in front of me – or so I thought.

Recognising these thoughts and feelings doesn’t mean you’re failing – it means you’re LIVING. I’m not saying this for sympathy – I’m saying this for reality. We’re not invincible.

As humans, we tend to live our lives in the “fast lane” so forget to take the time to really stop and honour how far we’ve come and accomplished. We tend to reach a goal and then fill our brain with worry about how we’re going to accomplish the next, and so on.
It’s learning the ability to switch your mind from “what’s going wrong” to “what’s going right for me?” mindset. Reminding yourself that you’re doing the best you can, that you’re really living ‘life’ for what it’s worth.

So continue to turn the page, be motivated, be curious because the biggest mistake you could ever make is to live life like you’ll get another chance to experience it all again.

Be open to new opportunities and change that may cross your path unexpectedly, because maybe everything you’ve lived through was all meant to take you to this point; giving you the courage to take the leap of faith, coming to terms with who you are and who you want to be.

Before you give up, learn to make up your mind about what YOU want out of life. Because you’ve already survived everything that has been thrown at you so far, and you’ll survive it again and again.

It’s time to stop letting our minds play games and begin living our lives through truth, gratitude and appreciation; to be proud and honour the path that got you to today 🙏🏼🦋💫 • Laura Lee •

‘Dazzle Together’ for May – Ehlers Danlos Syndromes Awareness Month

May is Ehlers Danlos syndromes awareness month🎗Ehlers Danlos syndromes are unexpected in the medical world because they are rare, mid-diagnosed and under-diagnosed. 

“When you hear hoofbeats, it really is a zebra.” 

The zebra is a symbol of EDS. No two zebras have identical stripes just like no two people with EDS are identical. A group of zebras in the wild are called a dazzle – that’s why every May we all assemble to be stronger and dazzle together to raise awareness ✨ 

Please consider donating to The Ehlers Danlos Society that will go towards funding research to find a cure 🔬 

What are you doing to show your stripes and support? 

Love wearing my beautiful handmade EDS awareness bracelet made by and given to me by one of my dear zebra friends, Christina. Go get one to show your support by visiting her Etsy shop here

#DazzleTogether #DazzleYourCommunity #EhlersDanlosSyndromes #EhlersDanlosAwareness #TheEhlersDanlosSociety #EDS #edsawarenessmonth #ZebraStrong

“Oh, You Can’t Eat That?” – My Food Intolerance Journey

When I was finally diagnosed with Ehlers-Danlos Syndrome in 2014 after 6 years of investigation, it also brought several other diagnosis that are known to go “hand-in-hand” with this connective tissue disease. EDS is a congenital disease (genetic) and is multi-systemic due to it affecting the strength of collagen (structural protein) throughout the body (collagen makes up all of your skin, organs, tendons, ligaments, bones, blood vessels etc.) [source: http://ehlers-danlos.com/eds-types/]. In simple terms, EDS causes all the strong collagen in your body to be instead, extremely weak, stretchy and easily breakable. Therefore, many patients who have EDS have problems with their digestive systems.

Prior to my diagnoses, throughout my time at the University of Leeds studying for my undergraduate degree my health began to spiral into decline. Over the three years (2011-2014), I was suffering from a variety of symptoms: extreme fatigue, trouble sleeping, bloating, abdominal pains and cramping, nausea, vomiting, muscle fatigue, muscle and joint pain, hair falling out, bleeding gums, brittle flaky nails, grey complexion, constipation, diarrhoea, excessive sweating, heat intolerance, anxiety, depression, concentration difficulties, brain fog, headaches, migraines, palpitations, dizziness, fainting and syncope episodes, hypoglycemic attacks, chest pain, flushing, unexplained full body or partial body rashes, hives, itching tongue and mouth etc. I thought it was completely ‘normal’ to feel this way after I ate and continually throughout the day as I didn’t know anything different – I know, crazy – but how is a person supposed to know that it isn’t ‘normal’ if you’ve just been in one body your whole life feeling a certain way? What is considered ‘normal’ to one person could be completely ‘abnormal’ to another.

Continue reading ““Oh, You Can’t Eat That?” – My Food Intolerance Journey”

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