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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Inspiration

“Hitting the wall” – London Marathon

I believe that there is power in suffering and chronic illness because it’s in these times of pure vulnerability that we learn how to overcome what seems the ‘impossible’, not just for ourselves but for others too.

By experiencing our own pain of “hitting the wall”, we can understand and care for the pain of others. In our chronic illness journeys, we encourage each other to keep fighting, to continue learning, to never give up – but we rarely talk about “the wall”.

Continue reading ““Hitting the wall” – London Marathon”

Mind Body EDS Charity Promo Video Launch!

🌟The official launch of @mindbodyeds Charity Promo Video! 🌟

Invisible illness is the very definition of hell. Ehlers-Danlos syndromes are a steep learning curve, and the only way in which to climb, is to have hope for what the future could bring. Because there simply is nothing else. There is no cure, yet.

In actively spreading education and awareness, the goal of our charity is to bring hope.
By providing financial grants and support to EDS sufferers, the goal of our charity is to bring relief.

Through supporting medical research, the goal of our charity is to bring resolution.
Mind Body EDS hopes to be ‘a gateway of hope’, to not just those of us with Ehlers-Danlos syndromes, but also for the future generations of zebras to come.

It’s time for us to be heard. It’s time for us to be believed. United, we stand together and ask you to join us in this battle together, making our invisible, visible 🦓💫🙌🏼

Make a true impact today by donating to our Virgin Money Giving London Marathon 2019 page – help our runner, John Thompson, to cross the finish line!

• Thank you to The Met Film School from the bottom of our hearts for turning our vision into a reality. We are so grateful for your incredible dedication and hard work helping us fulfil our charity’s mission •

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 •

The Power of Thought

 

Whenever I share my medical journey, I repeatably am faced with, “I don’t understand how you’ve survived; I don’t get how you were able to relearn how to walk/read/write again; how have you made the impossible, possible?” So here it goes, I’m going to share a part of my truth with you and how I’ve been able to get to where I am today in the hope of enabling others in all walks of life…

Continue reading “The Power of Thought”

Maple Aubergine Salad

Laura Lee’s Kitchen by Mind, Body & EDS

As my diet has developed into a more vegan style, I always like to make sure I use one core vegetable which is packed full of nutrients as my ‘base’. I have personally found that with my variety of complicated dietary issues, I can absorb the nutrients of food far better when there is no meat involved. If I haven’t consumed enough protein, I always reach for quinoa for my meals! However, if you feel like having some meat you can always adapt this recipe to more your style by simply adding some grilled chicken.

Aubergines are a fantastic vegetable as as they very rich in fibre and are a great source of vitamins and minerals (copper, magnesium and manganese).In particular, they are known to be extremely high in vitamin B1 and B6 which play very important roles to your body’s metabolism helping convert food into energy and produce essential substances, such as neurotransmitters (allows nerves to function properly) and red blood cells. They also have a very low glycemic index level (GI) and low calories so are ideal for any of you with high blood pressure and high cholesterol. Continue reading “Maple Aubergine Salad”

“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”

Homemade Blueberrytastic Muffins

Laura Lee’s Kitchen by Mind, Body & EDS 

THE BEST gluten-free, grain-free, dairy-free, low-FODMAP and vegan friendly blueberry muffins you’ll ever taste!

This is one of my absolute favourite ‘go-to’ recipe that are ideal for on-the-go breakfasts, ‘pick-me-up’ midday snacks or something to delight your sweeter side.

Continue reading “Homemade Blueberrytastic Muffins”

‘Patient Story’ Speech

“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”

Continue reading “‘Patient Story’ Speech”

Featured post

Change: The Battle of Acceptance

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“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.”  • Laura Lee •

Continue reading “Change: The Battle of Acceptance”

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