Becky: What doesn't kill you makes you stronger.. literally!
My name is Becky Lambert and I’m currently studying at The University of Leeds.
Growing up I was always very active and agile; gymnastics, dance and swimming took up most of my weekends, after playing various sports at school during the week.
Beginning of health issues
I was always fit and healthy but during summer 2014, just before I commenced university, things began to change. I had been travelling around South-East Asia, where I had experienced headaches, tremor-ing hands and serious heat intolerance. But I thought it was due to the climate and assumed it would stop once I was home. However it continued, and I had a constant fever and heart palpitations, then I started collapsing. I was so scared I had caught malaria or a tropical disease, but eventually I was diagnosed with autoimmune overactive thyroid (Graves' disease). Luckily I responded well to medication and although there were some complications along the way, I bounced back pretty quickly.
However, around May 2016 (by which time I was living a busy free-spirited student life, having just run a half marathon and rowing for my university) I started to feel ill again. The heart palpitations returned but this time it felt different. I was also dizzy and faint and had serious trouble concentrating, but I just put it down to tiredness. Then my sports training began to suffer, my legs and back would ache and I was so fatigued. I could no longer push myself as I always could before. Again I blamed it on not training hard enough.
By July 2016 it was pretty clear this was something more serious. I contracted various infections, developed hypothermia after capsizing whilst rowing and had a massive blood glucose low after two days of camping. All of which resulted in being blue-lighted and admitted into various hospitals, much to my reluctance. But still the doctors had no answers, they put my severely low blood pressure down to the fact I was athletic and that I just needed to rest my body.
PoTS and EDS Diagnosis
Clinging onto optimism and buying into what the doctors said I told myself I was fine and it would hopefully pass. Although, I ended up having to cancel a volunteering trip to Peru and after many internet searches I read up on Postural Orthostatic Tachycardia (PoTS) - all my symptoms seemed to fit and I got in touch with a great cardiologist. After having a tilt-test and various heart scans, PoTS was officially diagnosed and that it was caused by having Elhers Danlos Syndrome (EDS) hyper mobility type, which would have been worsened after all my autoimmune thyroid issues. After starting on Ivabradine and following a high salt and natural diet, things improved and I began my 3rd year of uni (under strict guidelines to take things slowly and gently...)
In late October/November, the gastro and digestion symptoms began. I had always had occasional bloating, but now most foods caused serious abdominal pain and nausea. I began to tolerate less and less until I was surviving off oatcakes, nature bars and nutrition drinks. I lost a lot of weight pretty quickly and was eventually seen by an amazing neuro-gastroenterologist. He diagnosed mast cell activation and explained that histamine reactions could cause digestive issues and were common with PoTS and EDS. Although soon after, my nausea had turned into vomiting multiple times a week.
I was booked in to have various tests, procedures and scans to rule out any further autoimmune complications. But by January 2017, the sickness became daily and then hourly. Soon enough I couldn't even keep water down, by which time my once strong body was gaunt and weak. I was so dehydrated from being sick 30+ times a day, along with awful circulation and low blood pressure, that my body went into shock twice in the space of a week. Both times I woke up in hospital and it was finally confirmed that my EDS was much worse than they once thought and was causing severe Gastroparesis. My stomach was totally paralysed. I was rushed into have an emergency endoscopy, where they injected my stomach to try and make it contract.
Clinging to hope and finding acceptance
At this point, my whole world had come crashing down. I felt so out of control of my body and had no idea how it could become so ill so quickly.
I could hardly believe 9 months ago I was so fit and active and now even breathing and opening my eyes was a struggle, let alone the pain it caused to walk a few steps.
There was only a 50% chance that the injection procedure would work and by this point my body was so close to giving up, without drips I wouldn't be alive. I prayed so hard, that this just had to work if I wanted any form of stability back. Then slowly but surely, a few days later I tried my first food and praise the Lord, it stayed down! Miraculously, this continued over the next few days. However, I had become so thin and weak that even though I could stomach more I needed full nutrition urgently. I had to have a naso-jejunal tube inserted and was fed over night.
Crazy now looking back, but actually it wasn't until the tube was put in that I really realised how badly my body had been suffering. I had to accept that my body was no longer the pillar of health I could always rely on and took pride in. In coming to terms with this, I gave myself permission to get better. That I no longer had to fight it because I was already defeated, yet now I had the chance to properly recover and slowly pick myself up again.
Beginnings of recovery and reconditioning
It's now March 2017, all of the above happened just over a month ago. Through learning to be patient and forgiving myself, I've gradually began to re-build my life. Already I'm re-conditioning my body and can eat much more. I even managed a short run - something I never thought I'd be able to do again a few weeks ago. Although I have a long road of finding my balance and restrictions whilst learning to manage these chronic autoimmune diseases, it can be done. I have already built up so much strength, considering how near my body was to the edge. PoTS/EDS/MCA/Gastroparesis and all other nervous system disorders, teach us to trust others and have taught me to allow others to help, despite my tendency to be fiercely stubborn and independent.
It has now been confirmed that I have an autoimmune rheumatoid connective tissue disorder, rather than just EDS. This explains why all my blood vessels and organs cannot contract properly and why my immune system antibodies were consistently so high. It turns out I probably inherited it from my late grandmother, who was a superb dancer and also highly flexible - high five Granny!
So, here's to facing life head on and living every moment to our fullest, even when our health doesn't always comply. Even though it is so hard when everyone around you is seemingly leading care-free lives, we must listen to our bodies; balancing what we want to do with what we can do!
"Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1