Fear or Faith

Welcome to my Blog. I want to invite you to join me on my journey, follow my goals, challenges, the ups and the downs. Perhaps My Journey will ignite your own passions and inspire you to never give up on yourself and your dreams regardless of your circumstances. I had something at the top of my bucket list - something really big - Everest kind of big, and I gave up all hope of achieving this, but my dream became reality in October 2019. This journey was/is about reconnecting with myself, a journey of faith that overshadows my fears. Follow my journey as I prepared to trek to Everest Base Camp.

"She is clothed with strength and dignity and she laughs without fear of the future."  

 

Bucketlist #1 ...

 “I am thankful for my struggle, because without it I would not have stumbled across my strength.”    Alex Elle

We all have a Bucketlist. I sure do! Whether it is a destination you want to visit, a goal or a challenge, or just going on an adventure. But what if your body lets you down and you can't tick off the one thing you have dreamed and read about from as long as you can remember? 

My name is Janettie. I am a British-South African and I live in Hertfordshire, England. I am 41 years old, married to my soulmate Jacques and have a beautiful 10-year-old son, Jamie.

I am adventurous, love a good coffee and exploring quirky coffee shops. I love travel, photography, architecture and design. I'm highly competitive, love a good challenge and a good laugh. I am committed to friendship and love my friends like they are my family here in the UK. Our family all live abroad and I'm grateful for all the support and love in my life. My favourite place in the world is in the mountains - the silence and how majestic they are, still blows my mind every time I visit. But the most important thing in my life is my relationship with Jesus. His love for me is unfathomable and undeniable.

 
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My Journey

In January 2009, I injured myself while giving birth to my son. I have a labral tear in both hips. It causes lots of discomfort and pain. Around the same time an MRI showed that I have osteoarthritis where scar-tissue formed around two degenerated spinal discs (L4 and L5) and a hair-line/stress fracture. Out of fear that the pain will actually be worse, I started living in denial. “Exercise is not for me, it is too painful”.

In February 2017, I started having severe panic attacks. It knocked my feet from under me. ‘Panic is what you experience when you are stressed or under pressure, or experiencing trauma’, well that's what I thought. I could not entertain the whole idea that I, now at the age of 39, developed panic attacks. It was a tough time because I WANTED ANSWERS. I learned a lot about mental health and understand that sometimes there just aren't answers. I became a prisoner of my own mind. I didn’t want to leave home for weekends-away as it just set it off. 

In December 2017, I had MRI after MRI and test after test as my consultant suspected that it may be arthritis causing all my pain. My joints gave me so much trouble. When the tests came back negative, the uncertainty continued. Don’t get me wrong, it was excellent news, but I just wanted answers. Why are my joints constantly in pain and why do I have difficulty moving around? I want to put a name to it all. I felt like I was going crazy knowing pretty well that something was wrong. 

In June 2018, I was diagnosed with a second Vertebral Artery Dissection (VAD). It was scary, but a familiar road from 3 years ago when I had my 1st dissection. When a VAD occurs, a stroke is highly likely at any time. It can happen because of an injury or without injury as in my case. Fear sets in and your thoughts run away with you. I sat down with Jamie when he was only 6 years old and had to explain to him what stroke is and what to do if mummy falls ill and can’t speak. We had numerous 999-call practices. My little soldier was my righthand during the day. Neurologists can't explain why I get these spontaneous dissections in my neck without injury. But more importantly, they can’t explain why I get them and not having a stroke.  Why is all this happening. I’m falling apart at the age of 40???

The lightbulb moment….

My neurologist came up with a theory that I may have EDS. For  7 months I've had numerous tests and more MRI's and all the evidence lead to EDS. It was finally confirmed that I have Hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). DNA tests were done for potential vascular EDS (vEDS). - Fast forward 16 months. These genetic test results came back 16 months after this journey started. I nearly lost the plot during this time as I was given NO answers and was merely told that DNA results could take that long (which is not the case by the way). My gut told me that my test has gone missing and that the doctors have nothing to tell me as they don't know where it is, I was not going to leave it here. DNA tests are very expensive and I was not going to accept not having an answer. Regardless of what the test may say - Positive or Negative, what will be will be, but at least I know and I can move on with my life! My DNA did get lots, and it was only because of my relentlessness for answers that I got hold of a laboratory 3 hours from where I live and found it (it took me 6 months). I tested negative for vEDS - what a relieve. 

 

EDS is a connective tissue disorder. Your body use collagen to provide strength and elasticity but with hEDS your body doesn’t produce enough collagen - leading to joint pain, hyperextensible joints (early onset of osteoarthritis), extreme tiredness, bruises easily, dizziness, increased heart rate after standing up, anxiety etc. and very stiff muscles (in my case). After more than a decade I had to learn that I am falling apart, and it is not just my imagination. The pain, tiredness, dizziness is real, and it is called hEDS and POTS.

"I know what I'm doing. I have it all planned out - plans to take care of you, not to abandon you, plans to give you the future you hope for."

Jeremiah 29:11

Waterworks at the Pool 

-where it all started...

Saturday, 29 September 2018
 

While at the pool with Jamie, I scanned through Facebook and a random advertisement came up. My heart skipped a beat (or 3). It was an article about the one big thing at the top of my bucket-list (see Chapter 13 in blog below) . In my mind I have completely put that aside in the trash-folder because of my physical limitations. I gave up all hope that this would ever be possible. While reading the article time stood still. I felt something which I haven't felt in a very-very long time. A certainty about something. I knew it was a nudge - no, let's not beat around the bush, it was a punch ;). Right there in my seat, I started crying uncontrollably. I realised I gave up. The fight in me - my "go-getter attitude" has faded over the years. I was aware that there was probably 50 people around me, but I just couldn't help it. I KNEW that my dream is still alive. I still want to do this. Right there and then I emailed the company for details and knew that this was my moment. It was my reality-check and knowing that I need to take control of my life, NOW!!! Lose weight and take control of my life instead of just accepting my circumstances. I need to get fit which will be a hell of a journey working around my EDS and injuries. I have faith and I can't say what the future holds or how my body is going to react, but I am going to give it my all!!

*FAITH OR FEAR*

Goals to reach before EBC

Weight:

58-59kg 
(lose 8,4-9.4kg)

Fitness:

Bootcamp
Swimming

Strength Camp

October 2019 - fulfil my bucketlist dream:

EDS awareness
Raising funds

 
Oct '19 Challenge: 

4 - 22 OCT '19

EVEREST BASE CAMP

Completed 

Photo: sarinaclark.com

A proud moment!

Front cover and my story got published! What a great way to spread a message of hope and resilience. My dream became reality when I saw Everest with my own eyes., We are all different and our passions and abilities (and disabilities) are different too. I could not have done this in my own strength and without support.

This article is literally my whole story (so far), pre-diagnoses, my diagnoses, training, anxiety, my unbelievable trek to Everest Base Camp, when I saw Everest for the first time and when thing didn't go according to plan - Faith not Fear! 

A gift I want to share with you which you can also pass on to someone else to read.

All in one year - this is crazy, full circle. 

On 6th October 2019, my dream became a reality when I trekked to Everest Base Camp to the foot of Mt Everest. ​It has been my childhood dream to see Everest with my own eyes. This was an enormous challenge for me as I have been diagnosed with hEDS, POTS and Osteopenia. My joints and muscles don’t always play along and I suffered 2 VADs (Vertebral Artery Dissections) in the last 4 years and multiple injuries but I was prepared and strong for my trek. This trek was an enormous challenge physically, but mentally as well.

 

I want to use the opportunity to raise awareness and support for Ehlers Danlos Support UK. Nobody should be left to fight on their own. I want to bring hope. Every person with EDS and the people affected by it, should have access to the appropriate medical services, care, and support. Ehlers Danlos Support UK is an amazing charity who support those affected and suffers difficulty on a daily basis.

Please donate by clicking on the link.

https://www.justgiving.com/fundraising/zebraataltitude

100% of all the JustGiving donations will go to Ehlers-Danlos Support UK.

Everest Base Camp Stats:

* 12 Days 

* 130km or (80 miles) hike

*  Highest altitude reached, Base Camp 5364m (17 598ft)

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Complete packing list  

Organising

Cubes

Bags

 
 

Blog posts ...

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Contact

 

Email: zebraataltitude@outlook.com

Facebook: Zebra at Altitude

Blog: https://janettiew.wixsite.com/fearorfaith

 

           Just Giving Page for EDS Support UK             

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