My Story ...
The mouthful version
Like for most of us with EDS we received our diagnoses later in life although we struggled with it since we can remember. Although EDS doesn't define me, it is integral to the way in which I live my life. I’m 41, a mother of a 10-year-old and I’m married to my best friend. But before I am a mum and wife, I'm ME. In October 2019, I joined 6 women and trekked for 12 days across the Khumbu Valley, to the foot of Mt Everest, where I reach Everest’s Base Camp at an altitude of 5,364m. 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 so my joints and muscles don’t always play along. I suffered 2 VADs (Vertebral Artery Dissections) in the last 4 years and multiple injuries.
My challenge was not only difficult and an enormous challenge physically, but mentally as well. In the process I raised awareness for EDS and believe that every person with EDS and the people affected by it, should have access to the appropriate medical services, care, and support. From the beginning my desire was to spread a message of hope.
Faith not Fear.
This is my story …
I've always been hypermobile and it helped me in all my sport when I was younger, it even lead to some party-tricks. In January 2009, I injured myself while giving birth to my son because of my hypermobility. I have a labral tear in both hips and it causes lots of discomfort and pain. At the same time an MRI showed that I have osteoarthritis where scar tissue formed around two degenerated spinal discs (L4 and L5) from old sports-injuries and a hair-line/stress fracture. Out of fear that the pain will be worse, I started living in denial. “Exercise is not for me, it is too painful”. I stayed clear. In the meanwhile old habits started creeping up on me and I slowly started gaining weight. Gaining weight is the worst thing for my joints, which are already painful. At this point I did not even know something called Ehlers-Danlos Syndrome existed. Since my son’s birth it was almost as if all hell broke loose. My body felt like it was falling apart. I spent more time at physiotherapy and doctors than in coffee shops, and I love my coffee shops. In the year following my son’s birth I spent a lot of time in hospital and was given epidurals to relieve my pain - which never worked but still I was given epidurals almost monthly as the doctor who treated me had no idea what was going on. Epidurals were the easy way out, I guess. Playing on the floor with my son was not really an option and I felt trapped inside my own body. My body was like an 80 year old body. It took me about 5 minutes just to straighten my legs, hips and back after playing Legos on the floor. All my joint became stiff and painful.
In 2017, I had MRI after MRI and test after test as one of many consultant suspected that it might 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? What is up with my heart rate, I don’t sleep properly and I’m fatigued? I want to put a name to it all. I felt like I was going crazy knowing pretty well that something was wrong. In the same year, I started having severe anxiety attacks. It knocked my feet from under me. ‘Anxiety 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, then at the age of 39, developed anxiety attacks. It was a tough time because I wanted answers. I learned a lot about mental health and understood that sometimes there just aren't answers to why we are having these attacks. 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 2018, I was diagnosed with a second Vertebral Artery Dissection (VAD). It was scary, but a familiar road from 4 years ago when I had my first dissection. A VAD normally goes hand in hand with stroke or is highly likely at any time shortly after the VAD. It can happen because of an injury or without injury as in my case. Fear sets in and my thoughts run away with me. I sat down with my son 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 right-hand during the day and weeks following my VAD. Neurologists couldn't explain why I got these spontaneous dissections in my neck without injury. But more importantly, they couldn’t explain why I got them without having a stroke. Why is all of this happening? I'm falling apart at the age of 40? My neurologist came up with a theory that I may have Ehlers-Danlos Syndrome. That was the first time I heard of EDS. I've had numerous tests and MRI's and all the evidence led to EDS. DNA tests were done to confirm his theory of potential vEDS. These genetic test results are still pending - I will only receive my results in February 2020 (16 months after my DNA test), shocking I know. In the mean while I have been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS) and Osteopenia.
Why is all of this happening? I’m falling apart at the age of 40? My neurologist came up with a theory that I may have Ehlers-Danlos Syndrome. That was the first time I heard of EDS. I've had numerous tests and MRI's and all the evidence led to EDS. DNA tests were done to confirm his theory of potential vEDS. These genetic test results are still pending - I will only receive my results in February ’20 (16 Months after my DNA test), shocking I know. In the mean while I have been diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS) and Osteopenia.
In September 2018, while at the pool during my son’s swimming lessons, 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. EVEREST. In my mind I completely put that aside and in the trash-folder because of my physical limitations. I gave up all hope that this would ever be possible. Time stood still as I read the article. What appealed to me was the fact that this company uses porters/yaks to carry your duffle bag for you, making it easier on my joints. I felt something that 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 were probably 50 people around me, but I just couldn't help it. I KNEW that my dream was 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 to help my joints and my mental state 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.
By the time I got home I already received information and dates. I walked into the house with red eyes and told my husband “I am going to climb to Everest Base Camp to go and see Everest”. He clearly saw how serious I was, and knowing that it is my dream to see Everest, he just said, “Well, then that is what you are going to do”. And that was that. I set up a blog, started my healthy eating, weighed-in with a friend who was committed to be on this journey with me, and met my trainer to help me on the journey - all in one week. I had exactly one year to prepare and I knew it was going to be tough. I wanted somehow to give back, so I invited people to join me on my journey by following my goals, challenges, the ups and the downs. Perhaps my journey will ignite someone's passions and inspire someone out there to never give up on their own dreams regardless of circumstances.
This journey is about reconnecting with myself, a journey of faith that overshadows my fears. I was invited to primary schools in my area to share my journey, where I also raised awareness for EDS but also talked to the children about resilience; “Dare to be Rare” “What makes you stand out from the people around you, the one thing that makes you different from the rest?” Life is too short to be obsessed with things we cannot change – earn your stripes. Lift your head and start loving yourself. Give yourself credit where credit is due. You can do anything you put your mind to – some have big goals and some small, it doesn’t matter. You are capable and built for greatness – it starts with a choice. Some days I wanted to give up as the pain and discomfort or the constant training got me under, but I kept my eye on my dream and had faith, and in the process I saw how many people I could inspire and help with my journey.
In order to reach Base Camp in 2019, fitness was of utmost importance. After 15 years, my dormant muscles needed to be found and activated again (to put it lightly). I needed a reboot. A very brave Bootcamp instructor, met up with me and I explained my circumstances. I told him that I will be the client he has never had, purely because I have every thinkable and unthinkable injury, and in order to get fit we will have to work around it. He was game. D-day. I got the gear and I looked the part, but it was the complete opposite inside my head. I wanted to run away as the fear of injury and pain was noticeable. Dan was prepared for me and every exercise was thought out carefully to avoid injury. Well, let’s just put it this way, I was ready to say ‘Hasta la vista, baby’ after the warm-up session. I wanted to leg it. My gluteus were burning like fire and my tummy muscles were bleeding – I was sure of it. I started off with one session per week and it took me a whole week to recover from the stiffness before it was time for the next session. 5 months in I started attending two sessions per week. I gradually build it up and being very cautious with my neck and joints. My neurologist, cardiologist, rheumatologist and GP’s all knew that I was going to Everest Base Camp and saw me regularly. I started hiking a lot to get familiar with my gear and adding the miles. In my 7th month I started 2 sessions per week and 1 day of hiking. In my 10th month of training I increased to 3 Bootcamp sessions and 2 days hiking - 5 days a week training. In September, a month before leaving for Kathmandu, I had to take some time off as my body got tired of this strenuous pace. Rest during training is good, muscles rebuild and strengthens. Tennis elbows, golf elbows, hamstring ...Cortisone injections and rest! 36-40 km per week hiking and 3 Bootcamp sessions and my body was prepared. Mentally you can be prepared but you never know what is coming your way.
Flying to Lukla Tenzing-Hillary Aiirport (2860m), the world’s most dangerous airport, was scary business. We had 9 days to reach Base Camp with two acclimatising days. The first day we hiked around 4 hours to Phakding 2610m. We actually descended on this day. I prepared well and was wearing my knee braces as well as my arm braces as I knew full well that a decent has more impact on my joints, but I was absolutely fine. All my training has strengthened my muscles around my joints and was holding it in place. I am taking Clopidogrel (blood-thinners), so before I left England I read up about Diamox (altitude tablets). It has the same side affect as Clopidogrel. With an unpredictable bladder as it is (thanks to my EDS), and taking Clopidogrel and Diamox, my bladder went into overdrive. For the whole trek I slept 45 minutes and woke up to go to the bathroom, sleep 45 minutes and went again, 7 to 8 times per night. The next morning we were on our way to Namche Bazaar at 3440m. It was going to be a tough day but my body was strong! Entering Sagarmath National Park the mountains revealed themselves. I was in awe. Suspension bridges over gushing glacier water and yows passing me all the time became the new normal. (A yow is a mix between a cow and yak and they live at lower altitude below Namche. A yak lives on high altitude above Namche and has long hair.) We reached Namche Bazaar when the clouds already moved in so we had no idea what Namche’s surroundings look like.
It was our acclimatising day so we stayed in Namche for two nights. This is it - it was my big day. I am going to see Everest. As part of our acclimatising hike we walked to the Everest Viewing Point. I came out from underneath the trees and walked onto a big lawn and there she was. Emotions overflow. I tried keeping it together but I went into the ugly cry. Tears of joy and awe. Since a little girl it was my dream to see Everest with my own eyes and there she was. Not a cloud in the sky and surrounded with mountaintops covered in snow. A day I will remember forever.
I mentioned about my anxiety attacks. Over the past two years it became less and less but knowing that I am away from home and travelling on my own always sets it off. So I was very nervous about coming on this trek, leaving my family in England. With my bladder not playing along and not enough sleep I knew anxiety lurked in the evenings. In the past 2 years I’ve learnt how to deal with my anxiety- and with some Cognitive Behavioural Therapy (CBT) sessions. I downloaded my favourite worship music. The tea-houses where we stayed in were very noisy so as soon as I was tucked into my sleeping bag at night (around 9pm), I put my headphones on straight away, 45 later went to the bathroom and put the headphones back on. That was my nightly routine and it worked for me. I had not one anxiety attack and it calmed me down.
On day 6 of my trek to Base Camp we had an acclimatising day in Dingboche at 4410m. I woke up with a sore throat, and by lunchtime after our fun acclimatising hike to 4730m, I knew I was sick. I couldn’t believe it. I did so well up to now. I got the notorious Khumbu Cough, also referred to as the high altitude hack. The cough is caused by the low humidity and temperatures associated with high altitude. The combination of exertion, sub-zero temperatures and low humidity at high altitude results in the faster breathing of cold, dry air that literally dries out the lung lining and bronchi. The irritation of the lining of the lungs results in a persistent hacking cough. It was extremely painful. Every time I coughed, I held my chest and my tummy, leaning forward with immense pain. My cough worsened and by now I had the flue, draining every ounce of energy I had left. Mix this with altitude where you rely on your lungs and it is not ideal. 3 Days later at 6am we were ready to leave Lobuche to reach Base Camp later in the afternoon. I was in a very bad state by now and had coughing fits at night. Going to the toilet at least 7 times a night (severe side effects from my altitude tablets and blood thinners) didn’t leave me with much sleep, but with this cough there was actually no sleep for me. I was knackered but it was a big day, the day I worked so hard for and a dream to see Everest, Base Camp and The Khumbu Icefalls. I started tasting blood when I coughed but there was never any visible blood. My guide kept an eye on me and constantly checked my oxygen levels. What was frustrating was the fact that my muscles were super strong and I had no joint pain, but my lungs were in a bad state. The hike from Lobuche to Gorakshep and then on to Base Camp was not an easy one (luckily I didn’t know that at the time).
I am a goal-orientated person, headstrong to reach any goal placed before me. The athlete in me knows my competitive side but now with limitations. I had to discover a whole new me since my EDS diagnoses. I’ve been in many situations in my life where I thought I’ll never get trough, but I’m persistent and resilient. When I was diagnosed with EDS and 10 years prior to that, the most difficult thing I had to come to terms with, was the fact that maybe I will never be able to be in a physical condition to play sports or just be active. When I started my training in Oct '18 it was hard but week-by-week I saw results. I got stronger and the dislocations and pain in my joints got less. It did not happen over night at all, it took a lot of commitment. I know we are all different and what worked for me may not work for the next person with EDS. The final stretch to Base Camp was about to push me far beyond where I had been pushed before.
The terrain had changed once again. The sign post at Gorakshep said; 3km to Base Camp / 3 hours. I am so glad I did not see that sign till the next morning. No green trees, hardly any birds, just boulders and lots and lots of glacier dust. Boulders are the worst nightmare for anyone with joints that easily dislocate. 150 meters before I had to turn right to descend and put my feet on Base Camp, I stood still, I lent over my hiking poles and I was done. I sobbed. I was tired, my lungs were burning and for the first time in my life I experienced a complete mental block. Normally I would talk myself out of things “come on Janettie, you can do this, you are strong and nearly there - 150 meters - come on it’s your goal, you got this", nothing. I could not stand up. Looking to my right, I saw some orange tents down at Base Camp, I saw the Ice Falls. I’m in an arena of mountains 7000-8000m plus, and I’m standing in the middle of it not able to move. I sat myself down on a boulder while my team made their way down. It broke me. I accepted the fact that I failed and I was heartbroken. My brain could not receive the SOS from my heart to stand up and complete this journey. I rested on my poles crying my eyes out and there, a message from Jamie, my 10 year old, written on one of my poles. My poles were extended throughout my whole trek so I did not see this message at all during my 9 days ascend. “I love you Mummy Dwag. Jamie” He calls me Dwag (short for Dragon as he is obsessed with How to Train Your Dragon). I cannot explain what and how it happened, but it aligned all my emotions and thoughts and I knew I had to get myself down there. I’m not doing this for me alone, I’m doing this for me, my family, friends, my dedicated Facebook followers and every Zebra out there who is struggling with EDS on a daily basis. The message came through and my heart and mind were communicating again. I stood up and walked down to the glacier and when I put my feet on Base Camp it was a moment I will never forget. It is still very raw as this mental block was new to me and challenged me on so many levels. The three hours walk back after reaching Base Camp was a blur to me. I felt a big relief, accomplishment and gratitude when we reached Gorakshep by late afternoon. During the night my oxygen level dropped drastically and I was given the opportunity to be evacuated by helicopter. In my head it was a done deal during the night when my water bottle froze next to my head inside the tea-house and I had constant coughing fits and a fever. But when I had to make a decision, I couldn’t take the helicopter. I wanted to finish strong. My guide knew our descent that morning would do me good as the oxygen will increase. He was confident that I’d be able to do this and walk back to Lukla in the next 3 days. My roommate was evacuated, as she was very ill. Listening to the helicopter leaving and flying over my head was very very hard, as I knew it was going to be 3 days of gruelling descent.
To make a long story short - I did it! What I have ascended in 9 days, I walked down in 3 days. Once back in Kathmandu the hospital awaited me. They had a specialist there within the hour to check for blood-clots (given my history), x-rays, blood tests, IV’s and the best ham and cheese sandwich I’ve had in my life! I had excellent guides who helped carry my backpack in order to help with my breathing and two amazing friends who walked down at my pace. My amazing support group who carried me down with their messages from all around the world, I am forever grateful and last but definitely not the least; I believe God has a plan for each and every one of us. He knows the desires of my heart and knows what makes me tick. Jamie’s message on my poles was no accident and I know He used that message to get me to reach my goal, knowing my heart. He did not leave me alone and in tears, He was with me all the way holding my hand, not letting go when I was petrified. He strategically placed that message there, for that divine moment when I was going to need it most. I can do all things as He is my core.
What’s next? For now I’m enjoying my family and will be enjoying Christmas in all my favourite coffee shops. I have several doctors’ appointments coming up and also my vEDS DNA result - not that it will change my zeal in life. Looking back, it was the hardest thing I’ve done mentally, and physically I am so much stronger than one year ago. I will not change this experience for anything. I love every bit of it even though I nearly didn’t make it.
Will I do it again... probably!
I look up to the mountains
Does my strength come from the mountains?
No, my strength come from God
Who made heaven, and earth, AND the mountains