My Untold Story: Making a Dream a Reality (Part 1)
As for most of us with Ehlers-Danlos syndrome (EDS), we received our diagnoses later in life, though we’ve 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 Mount Everest, where I reached 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. This means that my joints and muscles don’t always play along. I’ve suffered 2 VADs (Vertebral Artery Dissections) in the last 4 years and multiple injuries.
My challenge was not only difficult physically but mentally as well. In the process, I raised awareness for EDS. I 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.
This is my story …
In January 2009, I injured myself while giving birth to my son because of my hypermobility. I had a labral tear in both hips that was causing 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 and more time at physiotherapy and doctor’s offices. 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. Yet 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 an option and I felt trapped inside my own body. My body was like an 80-year-old body. It took me five minutes just to straighten my legs, hips and back after playing Legos on the floor. All my joints became stiff and painful.
In 2017, I had MRI after MRI and test after test as one of many consultants 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, and why don’t I don’t sleep properly and am constantly fatigued? I wanted 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’.. 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 set in and my thoughts ran away with me. I sat down with my son when he was only 6 years old and had to explain to him what a 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 had these spontaneous dissections in my neck without injury. But more importantly, they couldn’t explain why I got them without having a stroke. Why was all of this happening? I was 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 had 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. Unfortunately, these genetic test results are still pending - I will only receive my results in February 2020 (16 months after my DNA test). In the meantime 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 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 realized I gave up. The fight in me, my "go-getter attitude" had 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 wanted to do this. Right then and there I emailed the company for details and knew that this was my moment. It was my reality-check in knowing that I needed to take control of my life, NOW! It was time to lose weight to help my joints and my mental state and take control of my life instead of just accepting my circumstances. If I was going to do this, I needed to get fit, which would be a hell of a journey working around my EDS and injuries. I had faith and I couldn’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 being 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 boot camp instructor met up with me and I explained my circumstances. I told him that I would 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 glutes 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 built it up and was 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 were prepared. Mentally you can be prepared but you never know what is coming your way….
To be continued!
