Choose to meet a health challenge & not to be sidelined by Autoimmunity
Well, hello there...
I’m pretty happy to virtually meet you and to share my story with you. Life is a bit of a journey right, and we’re all in it together. The more we share our real stories, the more we normalise “real life”. On my journey, I’ve met a couple of curly, long-term health challenges, namely Ehlers-Danlos Syndrome, Hashimoto's Thyroiditis and autoimmune disease. Perhaps you have health challenges too, or just want to learn more about life on the paleo autoimmune protocol diet?
This is my first blog, and this is my very first blog post. This is where I draw my line in the sand, where I step up on my soapbox and tell you what I stand for.
Future posts will be much lighter than this long beast. This blog will become a trove of interesting bits from my wellness journey – I’ll share the latest health research using everyday language, I’ll share the delicious and nutrient dense recipes that come from my kitchen, I’ll talk about some of the daily hacks I use to keep being healthy simple, and how I keep my perspective. It’s so important to have perspective – if you’ve got it, your feet can metaphorically touch the ground and life can be pretty damn fun most of the time.
Even when it’s not.
Who am I?
First up, I’m a New Zealand woman (a Kiwi), from a Dutch father and a Kiwi mother, and I was born in the late 1970s. I’m a scientist by training (a wildlife and marine biologist), a foodie by inclination, a gardener when the sun shines, a respecter of wildlife and the environment, and an ocean-lover every single day. If there is sand on my kitchen floor and salt in my hair – I’m meeting my life goals.
My most important work these days is being a good mumma to a very small and very adorable little boy. This magical little human is why I work to be the best and healthiest version of myself every day.
Other than all that, I’m a human being. I have good attributes and flaws. I desire to love and be loved. I've make mistakes and I do good deeds. I’ve got warm skin, hair and red blood cells. In all the ways that count – I’m just like you.
And I have a story, just like you. It’s long, like yours, and here it is, as simply as I can deliver it.
The Important Things In Life
The most important thing in my life is my family, followed closely by my health. Without those two things, there is no quality of life. My beautiful son is the absolute light of my life. My life partner is Freddy – he’s from Sweden – we often clash cultures in our house, and it gets hilarious! I’ll share these crack-up miscommunication gems as they happen – I won’t be able to help myself.
Living with Ehlers-Danlos Hypermobility
All my life I have had some health challenges. I was born with a genetic hypermobility condition called Ehlers-Danlos Syndrome – this is a condition that affects the production of collagen in my body and means that I have more stretch in my tendons and ligaments than the average bear. Think circus contortionist performers, you know the ones that turn themselves inside out while balancing on a chair… on a stick… on a ball? They most likely had some form of EDS.
What it means for daily life is that my body doesn’t cope well with the outer ranges of joint movements. For example, before heading out on a backpacking adventure, if I haven’t spent significant time conditioning my body for carrying a backpack (and packing it light and using a supportive model), then the simple act of carrying it for even just an hour will cause me to injure my neck, spine or shoulders. Or playing tennis/baseball/cricket – that’s something I can’t do without injury as the force of hitting the ball on the racquet ends up in an injury to my wrist/elbow/shoulder. Every time.
Ehlers-Danlos is a total pain in the arse. And it regularly pisses on my bonfire.
With perspective – I’m very aware that I am very lucky to have the lower end of the range of this syndrome – there are EDS people with a more severe expression of the condition where all of the connective tissues in their bodies are affected, including their vital organs and gross mobility, and this can often result in a short life. I am one of the lucky ones to only have the hypermobility version – I know it – and I’m grateful for it.
In my 20s, I learned to live my life with EDS – as long as I avoided doing things that required extreme ranges of movement or put undue stress on the body (no bungy jumping for this chick), and as long as I kept my weight low and my core strength high – I was alright. I still occasionally had injuries from seemingly small events, and I’ve spent a small fortune on physiotherapists, chiropractors, acupuncture and x-rays. But when I manage to keep to the basics right, I function pretty normally and can (mostly) keep up with others.
I found a way to live a good and adventurous life, despite a somewhat pervasive health challenge. I focused on what I can do, I looked at ways to approach the things I can’t do in different ways, and I always kept smiling and working on a positive, but realistic, mindset.
Life Before Family
Before becoming a mumma, I was a professional marine biologist, working offshore in international waters, consulting to some of the largest companies in the world, and working to make a difference to the health of our oceans.
I loved my work and I loved the challenges my work presented to me. I loved the adrenal rush it gave me. I worked hard, I felt fulfilled, I was intellectually stimulated and challenged regularly on multiple professional fronts. I travelled widely, I had a great network of friends and life was good. It got better when I met Freddy, and even better when we learnt we were expecting a new little human to join our party of two.
Life Isn’t Always As It Appears To Be
But life wasn’t actually perfect back then. If I reflect honestly – there were hard times happening in my life.
I had a body that couldn’t do adventurous sports – meh – I found other ways to experience the adrenal rush. Mostly through the work I chose to do. Long contracts working offshore away from society, sprinting to catch planes, helicopters and ridiculous deadlines, late nights, big parties, multiple time zones, exciting journeys around the world, earning big money, having little sleep, and regularly moving around and living in close quarters with challenging new people.
The pressure, achieving highly under onerous demands, the need to be dynamic and adaptable to quickly changing environments – I craved these situations.
But I wasn’t living a healthy or truly fulfilling life – I was feeding an addiction for “the rush”. My body was “coping”, but not thriving. In reality, I was lonely and so busy chasing the next rush that I became practiced at ignoring all the warning signs my body was trying to send me. That’s what panadol, ibuprofen, caffeine, alcohol and berocca were for… right?
When One Becomes Two
In the early 2010s, my father passed away and an unfortunate series of events happened in life. I was grieving for my Dad, I made some poor decisions, and I created a dismal mess in my personal life. In the midst of a difficult time, the phone rang and I was offered a 6-week offshore contract. The only catch – I needed to be ready to leave within 12 hours.
It was the perfect escape. On that trip, I spent weeks staring out at the Southern Ocean horizon, in between work, reflecting on my Dad's life and forgiving myself and others.
You always make firm friends when you are working in close quarters with people for 6 weeks at a time. To compare, it’s a longer period away from real-life than the Survivor challenges, and we do it regularly. Even though you really like the crew – honestly, most of the time you don’t keep in good contact long-term. I’ll be unlikely to ever meet most of them in person again. There are a few I’m still firm friends with, but not many.
On this particularly fortunate offshore swing, I met four new friends, each of whom are still an important part of my life today. Freddy was one of these people. This big, blonde, hairy, kind, handsome, grinning Swede who plonked into my life at just the right time.
It was a classic sliding doors moment, when one set of decisions puts you on a path you wouldn’t have ordinarily taken, and on that path you meet the people who change your life forever. Freddy followed me home to New Zealand and never went away. Now we were a solid team of two.
When Two Becomes Three - A Challenging Pregnancy
Life was good together for us. We worked hard and travelled and adventured together in between. Although we did have long periods of time away from each other when we worked on different ships at different times in different parts of the world, we both understood the demands of offshore work. Hell, we were always happy to see each other!
I had learnt to live well with EDS, and at this point in my life, it was very background to the fabric of my existence. Until we were surprised (happily) with pregnancy.
Pregnancy is this magical event that transforms the female body into a cocoon that creates and nourishes new life. It is incredible, and women are so lucky to experience it. Men might have brute strength, the best salaries and the ability to wee standing up – but only a woman can create new life. Even for a woman who has no health conditions – pregnancy is a myriad of changes, some good, most uncomfortable, and all pretty freaking crazy.
One of the changes that kick in early on is the production of the hormone relaxin. Relaxin does a lot of things to help a pregnancy go well, one of which is to soften the ligaments of a woman’s body, to enable her pelvic bones to shift gradually as the baby grows, and create space. For my EDS body, with already soft ligaments, the addition of relaxin with a growing baby resulted in serious, unending pain. A lot of pain.
In grossly simple terms, from 3 months pregnant my pelvis began to collapse. The ligaments between my pubis bones were constantly shifting and tearing, my hips were mal-aligned and sub-luxating, the bones of my pelvis shifted to places to where they never should go. And they kept shifting – every time I moved, every time baby moved – I was in pain. I couldn’t sit anymore, I could only walk or lie down. Hell, I was barely even showing a bump, yet I could hardly move for the all-encompassing pain.
From then on, I was on hefty doses of prescription tramadol. Simple, everyday things could only be done during the peak of pain relief medication. By necessity of the length of pregnancy, it went on for months and slowly but steadily increased in severity. Day and night, no subsiding, constant pain. I cannot understate how awful this time was, how little I could do for myself, and how much of it I spent alone, not really coping, while Freddy was away working at sea.
For me, and many other EDS women, Ehlers-Danlos squashes the wonderous event of bringing new life into the world. This really challenging pregnancy ended with a healthy, strong baby boy after an elective general anaesthetic caesarean section.
Pregnancy and recovery was truly difficult – by far the most challenging bodily and mind experience I have ever encountered. We are so grateful to have our little boy who is healthy and strong, but he will be our only child. The risks to another baby from the high level of medication I need to take, combined with the level of care I require when pregnant, and the amount of pre-existing injuries I would be taking into a second pregnancy, means we have chosen to finish our family at just one lovely little boy.
He is beautiful, strong, kind and loving and he completes our family. He is enough.
Expecting Recovery… But Feeling Worse
So here we found ourselves – at home with a beautiful 6 week old baby boy who has a little reflux and doesn’t sleep much (like all newborns). I was still recovering in my pelvic region, I was still taking morphine and tramadol, and I was still using a loan hospital bed and other mobility equipment.
Over the next few weeks, I finally came off the morphine and start to reduce the tramadol. The loan bed went back to the hospital and I started taking short walks on crutches.
I thought my pelvis was starting to feel a bit better. But, I wasn’t really sure - I was feeling very confused about my health. I had been through a difficult time, I thought I wasn’t well but I didn’t know why, I couldn’t think or put my finger on it. I had a newborn baby, I was breastfeeding, not sleeping and had been taking serious pain killer medication for a long time. It was difficult to figure out what was down to my recovery and general life situation, or what could be signs of something else going on.
I noticed that my hair was falling out in great handfuls. I was desperately tired, so tired that I couldn’t keep my eyes open at most times of the day and often tears of tiredness were falling down my face. I couldn’t think straight, I was losing my sentences in the middle of speaking them, I felt brain damaged and was behaving like a dementia patient. It was truly embarrassing for me, who once was academic. I tried putting it down to the usual symptoms of having a new baby - newborn tiredness, post-pregnancy hair loss and mummy brain right?
But there was more. My oily skin was suddenly dry and coming off in sheets from my arms and legs. I told myself it was probably hormone related. My body ached to the bone, but I put that down to the EDS and pelvic healing. At 2-3am every morning I would wake with my heart thumping in my chest and adrenalin pumping through my veins. For no reason. For about an hour I’d feel like wildly stimulated for no reason. I’d force myself to stay lying in bed, with a heart rate over 90bpm. And then it would subside, and after another hour of winding down I’d manage to slip back to sleep (in between baby-feeds). In the morning I would wake-up feeling like the worst ever hangover was upon me, I could barely open my eyes or get out of bed.
I couldn’t maintain my usually up-beat perspective. Life was fucking HARD and the pain and confusion in my body was relentless. I wasn’t depressed, I just couldn’t function. All day this hangover would stay with me. Whenever baby slept – I had to sleep – when Freddy was home I was even napping while baby was awake. Nothing was getting done.
I felt anything BUT normal. I expected that having a newborn and getting better wasn’t going to be a walk in the park… but I WAS meant to be getting better.
This was something else.
Then I realised that instead of losing the baby weight while breast-feeding – I was actually gaining weight. And this made me panic, it was the straw that broke the camel’s back. With EDS I can’t be overweight or I’ll have injuries that happen easily through normal life activities because I’m too heavy for my ligaments. I started to calculate my calories and restrict them heavily. I followed a strict program of weighing my food and knowing exactly what I was consuming. But I kept gaining weight. That’s not even possible said my science brain, yet the scales weren’t lying.
Diagnosing & Discovering Autoimmune Disease
I visited my Dr and pre-empted my symptom description with “I’m not over-reacting, I’m not just another new mum – something is wrong and you need to find out what it is”. I told her I wasn’t coping and I could see that the prognosis was not good if it continues. Right then, I was a brain-affected, memory compromised, completely exhausted, overweight, injury prone mother to a newborn baby and doing it solo for 6 week stretches at a time.
Tests ensued. I can’t remember how long it took to get a diagnosis, but it didn’t happen fast. It wasn’t days, it was weeks, probably more than a month.
Finally, I was diagnosed with an autoimmune disease called Hashimoto’s Thyroiditis and adrenal exhaustion. My immune system had mis-identified my own thyroid tissue as a foreign invader and launched an all-out immune response. The adrenal exhaustion was the cause of the mysterious hangovers and heart racing events. My adrenal glands were not functioning correctly – instead of producing cortisol early in the morning to help me start my day, they weren’t producing any cortisol at all. Instead, they were misfiring in the middle of the night to pump me full of adrenaline at a completely inappropriate time.
I knew nothing about autoimmune disease back then. There was no easy answer that I wanted to hear. I heard "Here’s a synthetic hormone replacement that you’ll need to take for the rest of your life. It’ll relieve some of your symptoms, but not all. The rest of the symptoms you’ll have to learn to live with. Your metabolism is always going to be slow so you’ll struggle with your weight from now on, you’ll probably always feel cold, and you’ll have difficulty thinking. There is no cure or other treatment available at this time, and no, we don’t really know why it happened. You’ll learn to live with it.”
Trying To Figure It Out
I took the artificial hormones, and some of my symptoms did ease a little. I felt a little less tired, my memory improved a little, my hair stopped falling out. I still had weight issues, I still had adrenal issues, I still couldn’t finish all my sentences or remember what I did an hour previously, and I still couldn’t exercise without feeling whacked for a week afterwards.
My life was completely changed. I couldn’t manage my EDS appropriately anymore, and I kept injuring myself because I was overweight and had no muscular conditioning or core strength after being inert for such a long time. I tried to exercise gently, but every time it would throw my adrenals into a spin and I’d feel worse for weeks afterwards. I tried to manage my weight through calorie counting, but it had little effect. I was still sleeping whenever baby slept, and more when Freddy was home.
I couldn’t keep up with life, it was like I was on the side-lines – benched, injured and sulking. My positive attitude went south. I couldn’t concentrate well enough to read a book, let alone finish my sentences. I was embarrassing myself. If I could have gone to work – I would’ve been promptly fired.
Compared to my life pre-pregnancy – I was a complete mess. Nothing was the same, not my mind, nor my body. I loved my baby and I loved being a mumma, but my quality of life was poor by my own standards. I was teary and upset about it. I couldn’t figure out how to get better, and the Drs didn’t offer any hopeful avenues to trial.
Then one day I woke up and just thought “fuck this”. I refuse to be a miserable, unhappy, overweight woman who can’t leave the house, keep up or have fun with her family. The Drs had nothing for me. So I started my search with local natural health practitioners and everyone’s knowledgeable friend – “Google”.
The Paleo Autoimmune Protocol Diet
I tried a lot of things early on. Supplements, kinesiology, chiropractic, acupuncture, nutritionists, health coaches, don’t eat this, do eat that. I stopped eating gluten, and that did help a little bit. Nothing else really helped that much, other than making our wallet lighter.
After a year or so, I happened upon a group of people with autoimmune diseases who were talking online about the Autoimmune Protocol (AIP). I looked at it briefly and felt really daunted by it. It was a version of eating the Paleo diet, but taking out all foods that have ever been shown to cause inflammation, and adding in foods and activities that were truly healing. The lifestyle changes they were talking about seemed simply too great. How do you run your kitchen without grains, eggs, and dairy? Without nuts, seeds, nightshade vegetables, beans and legumes? No caffeine, alcohol, chocolate or sugar? What the hell DO you eat? How do you sleep 9 hours a day with a baby? What the flying fuck is bone-broth?!
Hashimoto's Thyroiditis and autoimmune disease meant I wasn’t really coping with normal life demands as it was. I wasn’t willing to make changes that would create even more work.
I kept trying the supplements and other little changes, but never really feeling much better. It was exhausting, there was little joy other than the special moments with my wee baby. Friends started dropping away. I wasn’t the Kaye that they knew anymore, and I don’t blame them in the slightest – it wasn’t easy to be me during this time, and I’m certain it wasn’t easy to be around me either.
The Autoimmune Protocol group kept popping up, and I started reading more into the science behind it. I discovered Dr Sarah Ballantyne, Mickey Trescott and Angie Alt. Their personal health stories and their professional approaches resonated with me. I stopped and listened more to them. They started to make a lot of sense, the physiological basics supported what they were talking about, and they were evidence that it worked. Still the changes required to start the Autoimmune Protocol Diet seemed too great to attempt.
Then I discovered that Mickey Trescott and Angie Alt had put together a programme for people with autoimmune disease just like me, that stepped us into the Autoimmune Protocol progressively over a number of weeks, with support systems to prop us up when needed. It was affordable and it was my last resort. I had no more options, and I wasn’t ready to give in to being “that woman on the side-lines”. So I enrolled.
And I never looked back.
Learning to Live Well with Hashimoto's Thyroiditis and Autoimmune Disease
My Freddy is solid as a rock. Although he had to come and go with work and often left us for long time periods, he was an incredible support. We started the 6 week Autoimmune Protocol program together – yes – he had NO autoimmune disease, but he wanted me to succeed. He knew that as a team, success would be much more likely. He threw away his favourite coffee, bread, chips and salami and started eating bone broths, sauerkraut and kumara with me instead.
Over 6 weeks, we slowly progressed our food stores and meals to Autoimmune Protocol compliant foods. We introduced healing foods that were rich in gelatine, and fermented foods that were nutrient dense and filled with raw probiotics. We concentrated on rest time, quality sleep, spending time in nature and gentle exercise that didn’t stress my adrenal glands. We threw everything we had at it, and gave it a red-hot shot.
For the month or so – I felt even worse. If I hadn’t been on the 6-week programme and surrounded by support people who understood more than me about what was happening in my body – I would’ve given up. I thought the Autoimmune Protocol diet was making me feel even worse, and in part, it was. The support crew explained to me that it was natural for some people to feel worse as they healed, not to give up, and to stick with it for at least 3 months.
So I did. And one day I woke up and felt good.
I can remember that day like it was yesterday. I woke up, and I felt… no hangover? It was such an unusual feeling for me! Nothing hurt. I wasn’t tired. My thoughts were clear. I felt happy. I wanted to go for a bush walk with my boys. And we did. We went for that bushwalk – the first one in a very long time. And I didn’t need a sleep afterwards. I didn’t need to sleep during the day at all that day. Or the next. Or the next week.
I was healing and I was actually feeling better! It was so liberating, so freeing, I honestly felt like I had won the lottery of life.
Life Today – There Are Still Challenges To Overcome
I’m still mostly following the Paleo Autoimmune Protocol Diet today (with the inclusion of cocoa). Occasionally I’ll treat myself to free-range eggs or organic butter. I’m very motivated to stay well through following the Autoimmune Protocol, because life is like night and day when I don’t. If that means I must go without certain foods and drinks – so be it. These changes have given me my life back. I can think and play and function normally again.
That was nearly 2 years ago. I would say that 80% of my Hashimoto's Thyroiditis and autoimmune disease symptoms are relieved by the lifestyle and dietary changes I have made. And my diet is so naturally nutrient dense that I don’t need expensive supplements anymore.
Sometimes I eat a little something here and there that I shouldn’t. Occasionally I get away with it, most times I don’t. These days I know what to do when I’ve made a mistake like that, and I correct it fairly quickly, losing only a day or so to downtime.
The Beginnings of K4 Cultured Foods
Being a bit of a creative-type foodie and a scientist, the process of fermenting food really spoke to me on many levels. I could blend science with food and health in my own home kitchen – woohoo – what fun! And I became pretty good at making cultured fermented foods.
Soon my friends and family were wanting jars of this and that. My wonderful friend Linz convinced me to try selling my Kombucha at the local market and we sold out. That move precipitated the start of our wonderful new business K4 Cultured Foods, where we create live, cultured foods that are rooted in wellness principles to share with people.
People just like me, and people just like you.