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mind, body & EDS

| living with a rare, invisible, genetic disease |

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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

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”

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

UPDATE: First Post-Op Visit Results

My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.

Continue reading “UPDATE: First Post-Op Visit Results”

Jetting Off to D.C. 

Time to jet off back to Washington D.C. for my first official post-op neurosurgeries and brain surgery check-ups! I’ll also be attending some Gala events and will update you on my patient advocate role soon. Keeping my fingers and toes crossed that our 3 weeks stay won’t turn into an unexpected 9 months this time around…Wish me luck! 🇺🇸✈️

#FourMonthCheckUp #Neurosurgeries #BrainSurgery #EDS #SpinalFusions #Chiari #ICH #BrainClot #Stents #HealthJourney

“No Pain, No Gain”

September is ‘Pain Awareness’ month and highlights the importance of spreading awareness of chronic pain and reducing the stigma that people with chronic pain face both in our healthcare system and society. It is also ‘Invisible Illness’ week and I would like to emphasise that there are hundreds of millions of people in the world with invisible illnesses that feel misunderstood by everyone. Unfortunately, living with Ehlers-Danlos Syndrome means living with chronic pain – which is one of many common symptoms. This invisible disease comes hand-in-hand with invisible chronic conditions that will follow us forever. All we need is for people to understand and accept us.

Continue reading ““No Pain, No Gain””

Lumbar puncture, road trip to Virginia and tornadoes!

Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

Continue reading “Lumbar puncture, road trip to Virginia and tornadoes!”

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