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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Lifesaving

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 •

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!”

My Second Critical Lifesaving EDS Neurosurgery: Tethered Spinal Cord Syndrome 17th February 2016

QUICK UPDATE: Discharged from hosptial

My Second Lifesaving Neurosurgery on Wednesday 17th February went well, even though there were some unexpected additional surgical procedures that were required during the operation to help improve and preserve my quality of life. Unfortunately, I have lost a significant amount of sensory function in my lumbar spine and lower limbs and control of my bladder/bowels. However scary this is for me at the moment, we are hoping these sensory function nerves have not been permanently damaged already (pre-surgery), and that instead it will heal with time – but this is very uncertain. Continue reading “QUICK UPDATE: Discharged from hosptial”

Southampton MedSoc Raises £300 for #CareForLaura Appeal!

My twin sister (Rochelle) is currently attending the University of Southampton studying her first year of Medicine. The university MedSoc (Medicine Society) have been so supportive thus far for my #CareForLaura Appeal. They held an “Open Mic Night” on 9th February Continue reading “Southampton MedSoc Raises £300 for #CareForLaura Appeal!”

A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal

Source: Appeal for critical lifesaving neurosurgery for 23 year old PESGB Member Laura Sylvester

I would like to thank PESGB (Petroleum Exploration Society of Great Britain) for publishing and spreading awareness of my unexpected Second Critical Lifesaving Neurosurgery Fundraising Appeal and my rare genetic disease, Ehlers Danlos Syndrome. Continue reading “A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal”

Everyone, tune in to listen to 96.4 Eagle Radio from 6am (GMT) tomorrow (Monday 8th Feb) for ALL DAY coverage of my “Second Critical Lifesaving Neurosurgery” fundraising appeal interviews! So thankful to Eagle Radio helping spread awareness of my rare genetic disease Ehlers Danlos Syndrome and my fundraising efforts! 

Link: http://www.964eagle.co.uk/resources/radioplayer/3/

Made Front Page of the Farnham Herald!

Please consider donating on my YouCaring site: https://www.youcaring.com/laura-sylvester-483048

Please Like/Share Here: https://www.facebook.com/careforlaura/

#careforlaura

 

SECOND CRITICAL LIFESAVING NEUROSURGERY FUNDRAISING APPEAL

#careforlaura

Since announcing the success of my complex lifesaving craniocervical fusion neurosurgery on the 13th January in Washington D.C., I have been undergoing further clinical tests, X-rays and MRIs of my lumbar spine. The reason for this is that I have been experiencing differently-sourced neurological symptoms that are not linked with my first surgery or neck injuries.
Continue reading “SECOND CRITICAL LIFESAVING NEUROSURGERY FUNDRAISING APPEAL”

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