“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’.”
“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
From Rochelle (Laura’s twin sister):
She’s only gone and done it again! Laura has pulled through her 6th neurosurgery but her first in the UK! Selfishly, it’s amazing that she’s so close to home and fortunately the standard of care has been amazing thus far in consideration of her EDS (apart from the NHS bed shortage scare this morning which meant her surgery almost didn’t happen today 🤦🏼♀️). Most importantly, the surgery all went to plan and she is expected to be discharged tomorrow ☀️ She’s been in good spirits both pre- and post-op👇🏻
“Bravery is the audacity to be unhindered by failures, and to walk with freedom, strength, and hope, in the face of the unknown.” 🦋
This last month has been a complete blur. Only now am I beginning to realise the extent of the reality that faces me since being told I’ll be undergoing my 6th brain surgery in just over a week in Cambridge (U.K.), on the 18th April.
This will be the beginning of many more pioneering brain surgeries that await for me in the years to come, to attempt to fix the severe blood flow problems in my brain and neck.
The planned surgery is to remove delicate spinal bones that are compressing major veins and arteries at the base of my skull and top of my spine; specifically, my left styloid and left C1 transverse process. I’ve been advised and told that my initial recovery from this surgery will be at least 6 weeks.
Thinking that things couldn’t get any worse, I received a call from my US neurosurgeon a few weeks ago informing me that I have more serious instability problems in my spine that is compromising my spinal cord and explains the worsening of my symptoms.
I’ve been reluctant to say anything about this because, in all honesty, I think I’ve been in a state of shock and denial – I truly didn’t want to believe that what I was being told was real.
I’ve been continuing my day to day life, finishing off my thesis whilst working as a geoscientist, balancing osteopathy, pain management and other specialist appointments, whilst socialising and going out with family and friends, and keeping up with my gym and physio routine – trying to distract myself, to try and feel as “normal” as possible.
All my closest family and friends know how dedicated I am towards my rehabilitation physically and mentally, and being told that there are new problems compromising my life is beyond heartbreaking. To accept this is even more incomprehensible and I really don’t want to believe it.
I admit that I am scared of what lies ahead of me…the thought of what if I never feel better…and what if I have to live feeling this way forever?
This isn’t living, it’s surviving – but reflection is what has saved me.
To be reminded of how much I’ve already gone through, that my positive mindset and persistence has given me the opportunity to relearn how to walk/talk/read/write in just under a year, gives me the hope that I have the strength somewhere within me to get through this next obstacle that faces me.
That the impossible is actually possible if you just believe ✨
• Laura Lee •
When life gives you something that makes you feel afraid, that’s when life gives you a chance to be brave • A normal 20 minute catheter angiogram procedure actually turned into over 2.5 hours of tests and investigations. Overall, the angiogram revealed a lot of complex problems and complications with the blood flow in my brain and neck which explains the recent decline of my health. It’s disheartening to hear that my body is failing me, but I am forever hopeful that the specialists will be able to provide pioneering surgical treatments. This is by no means a cure, but instead a way of managing a chronic disease to save and better my quality of life. The new year ahead is certainly going to be a challenge but I have faith that at least there are specialists here in UK willing to push pioneering medical treatments for EDS patients. Thank you for your continued love, prayers and support ✨🦓🏥🦋 • Laura Lee • #zebrastrong #nevergiveup #hope #spoonie