“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’.”
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”.
🌟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 •
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 •
“Our backs tell stories no book have the spine to carry” •
It’s having the courage to not need all of the answers. Wherever you are right now is exactly where you need to be. Seven billion in this world can’t do everything in exactly the same scheduled order. We are all different with a variety of needs and goals. What is early? What is late? Compared with whom? Compared with what? Remember that your life is not on anyone else’s schedule. Don’t beat yourself up for where you are right now. It’s your timeline, not anyone else’s, and nothing is off schedule.
2019 I’m ready for you: nothing like beginning the new year with my 7th brain surgery – removal of my right styloid and right C1 transverse process to help improve the blood flow to and from my brain 🤘🏼🧠💫
After spending 5 hours in recovery ICU, I was finally transferred to M5 ward at Addenbrooke’s Hospital. Let’s just say that recovery after this surgery has not gone as smoothly as others and unfortunately I’ve suffered from some post-op complications. My swallowing has been tremendously affected due to oedema and possible nerve damage from the surgery site, but we won’t know the extent of permanent nerve damage for another few weeks once initial swelling has reduced.
Reality of recovery is never simple. No matter how much you try to physically and mentally prepare yourself for it and also for potential complications post-op, sometimes you just get completely blindsided.
Last night was one of the toughest parts to recovery I’ve suffered from to date. Unfortunately, I suffered from a major dystonia episode lasting over 2 hours. It’s been the worst dystonia episode I’ve experience post-op I’ve ever had. My body was uncontrollably contorting and spasming with my torso and head being thrashed with my legs seized up. I’ve never felt so exhausted and fearful in my life all at once. It was traumatising and very painful. Not knowing when the uncontrollable spasms, contortions and pain would end was unbearable, not just for myself, but also for my family members and loved ones seeing me suffer. Finally after 2 hours, an emergency on call doctor came to my rescue and administered a muscle relaxant suppository which immediately calmed me down, allowed my body to relax and unwind from my awkward spasming. At the end of it all, I completely drenched the bed with sweat and tears feeling completely knackered. The unpredictable nature of EDS makes this chronic illness so much more difficult to deal with. But I’m grateful for the medical staff who were able to help stabilise my body and provide relief.
We’d greatly appreciate as many prayers, thoughts and wishes as a family to help us get through this difficult time of post-op recovery.
•Laura Lee •
#zebrastrong #nevergiveup #hope #butyoudontlooksick #invisibleillness #chronicillness #chronicdisease #warriors #inspiration #ehlersdanlossyndrome #dysautonomia #spinalfusion #chiarimalformation #tetheredcord #spinabifida #brainclot #stents #vpshunt #neurosurgery #brainsurgery #survivor #intercranialhypertension #zipperhead #pioneering #advocate #spoonie #qotd
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…
• Bravery isn’t a lack of fear, but continuing on despite it; through it all she kept going •
One of my worst post-op nightmares became a reality.
The last 24 hours have been a terrified whirlwind of exhaustion.
A routine brain catheter angiogram I had in Cambridge yesterday turned into an unexpected serious admission into majors A&E.
My joggers were soaked in my own blood, my leg was almost twice the size than it should have been, and I was so nauseated and vomited because the pain was so unbearable.
My body suffered from a major complication from the catheter angiogram and angioplasty, specifically a major haemotoma to my femoral vein and artery.
Thankfully I am now stable, the bleeding has stopped and the swelling has reduced. However, I’m still at risk of the possibility of the haemotoma clogging one of my arteries.
The reality is, simply existing with a rare condition that no doctor has a clue how to treat is beyond exhausting, difficult and overwhelming at times. I’m reminded of my struggles each day. Somedays life is all about your dreams, hopes and visions for the future. But there are somedays where life is simply just about surviving – focussing on putting one foot in front of the other, courageously continuing on this unbeknownst medical journey not knowing what challenge awaits around the next corner.
Now it’s time to give my body the chance to heal from this unpredictable ordeal. Thank you all for the love and support as always and giving me strength to get through another hurdle 💗🦓🦋
• Laura Lee • #nevergiveup #hope #zebrastrong
“But you don’t look sick,” is a phrase many people living with an invisible illness have heard one too many times. It may be expressed with no malice – or even intended as a compliment – but saying such a statement can undermine the seriousness of an individuals invisible illness. It’s one of the many challenges people living with such illnesses face when it comes to communicating with friends, family and even doctors, who may struggle to understand a condition that they cannot physically see the effects of. You have to constantly advocate and explain yourself because people generally don’t understand something that they can’t see, or that they’ve never heard of before.
But what is “sick” supposed to look like? “Sick” looks like me.
I know it may be hard to believe because I may look “well” on the outside, but the reality is my body is falling apart on the inside.
Living with a incurable chronic illness means you will have good days, bad days and in between days. The baseline of wellness for us is constantly fluctuating and unpredictable: one second you’ll see me doing a 5km dog walk, the next you may see me in a wheelchair or hospital bed.
The truth is, I will not allow society to pigeon-hole me into a specific label, image or stereotype of what they think being “sick” should look like. I’m not responsible for other people’s thoughts, words, opinions and judgements – the best I can do is advocate for myself and the thousands of others with an invisible illness to tear society’s stereotype down and instead, educate.
You need to understand that life isn’t what you’re given; it’s what you create, what you overcome, and what you achieve that makes you beautiful.
So what should I look like then?
Just like this 👆🏼A young woman on a mission…a mission to live and embrace each “well” moment💫🦓🦋 • Laura Lee •
Today marks the day where a big dream of mine from two years ago after my first lifesaving neurosurgery, has finally turned into reality…I made a promise to myself and my family that I would do something to ensure that others did not have to suffer in the same way, physically and financially, from a failure to diagnose EDS early. I’m SO excited to share with you all the official launch of our new charity, ‘Mind Body EDS’ 🎉🎗🎉🦓🎉
I couldn’t believe the irony that the launch date of our charity I would find myself, once again, back in hospital in a highly specialised ENT unit being treated for a severe CSF brain fluid leak – but this is the reality of living with EDS, that we are vulnerable to the unexpected at any given time. I also believe this is a special message from above, reminding me that no matter how sick you are, to never lose sight of your dreams because no obstacle is too great to overcome! So please check out our brand new website http://www.mindbodyeds.org.uk , spread the word, and we’d be most grateful for any donations to help support and change the lives of all U.K. EDS sufferers 🦓💛🇬🇧🎗 • Laura Lee • A huge thanks to Andy Blair for helping design our fabulous website! #myedsdiagnosis #mindbodyeds #hope
“Be proud of all your scars. They are badges of honour you’ve earned from the challenges that life has thrown at you. Your scars are a sign of strength and resilience. A sign that you chose to keep surviving” • Laura Lee •
It’s discharge day! Wow, what a relief after the last three days of major post-op struggles and suffering from typical EDS crashes including severe dystonias, dysautonomia and adrenal insufficiency attacks, and pain like no other – exhausted doesn’t even begin to describe how my body is feeling. You’d think this being my 6th neurosurgery it would become easier, but each time it gets more difficult as my body becomes more fragile. This is just the beginning of a long journey of further surgeries that lie ahead of me. But, here’s to being the first EDS patient in the U.K. to undergo these series of pioneering brain and neurosurgeries – I’m hopeful that this new path of treatment will help restore the necessary bloodflow to my brain and neck and give me another chance at life. I choose to keep trying because there’s so much more life I have yet to live. Thank you for all your incredible love and support from across the world, each one of you gives me the spark of hope I need to keep going.
#zebrastrong #nevergiveup #hope #brainsurgery