So I have been a little quiet this past fortnight because something incredible has happened. I have finally connected with a beautifully compassionate doctor, a Holistic Medicine specialist, who is discovering the cause of my illness and will work with me over the coming year to rebuild my health. I am able to share my journey openly because now I have the beginnings of a diagnosis, and the hope of one day achieving balance in my health. This is a long and personal post about my journey with Autoimmune. It is a little more sombre than my usual sparkly idealism because it has been a bit of a scary journey. I want to share this part of myself with you too, as I discover that all the parts of me are beautiful. I can release my fears, stop hiding my illness, embrace all of the gifts it has given me, surrender to the love and support I am receiving, and hopefully raise awareness of autoimmune conditions such as mine, so that other Luminaries need wait 26 years to receive the help they need.
I will just share a summary of my medical details at this stage. This past week I was in Brisbane undertaking dozens of tests, and I won’t receive all of the results and the full picture until mid-February. I am just learning to open up about this part of my journey, as for so long, I have been looking after myself, feeling like I must be crazy as doctor after doctor attributed my increasingly kooky symptoms to stress. But if you or your Loves are suffering from anything similar, and I can help at all, I would be absolutely delighted to share more details with you. Simply tweet me @izennah or email email@example.com. Sarah Wilson and Chris Kresser have provided inspiration throughout my journey and their blogs are incredible resources for Autoimmune Luminaries.
I’m able to begin wrapping my mind around all that has happened. I have been a fragile wee-thing since I was born. This is my shortlist of kooky symptoms, which have become increasingly pronounced since I was 14:
- Myriad allergies. Products. Grasses. Animals. You name it, I itch, sneeze and sniff at the sight of it.
- A distressed tummy (to say the least).
- Girly problems (sorry to be coy!).
- Severe food intolerances. Gluten. Dairy. Alcohol. FODMAPs. And more.
- Weight, fluctuating within days between way too thin and uncomfortably puffy.
- Inflammation. Muscle aches. Pain. Numbness.
- Insomnia. Intense fatigue. A fuzzy brain.
- Lack of immunity.
As the years went by, my poor body just seemed to shut down. Weird things started happened with alarming frequency. One day my hair would fall out in clumps. The next my throat would swell up. The next I would have bruises the size of grapefruits in funny places. My skin started to turn yellow.
I was getting scared.
As I thought that it was simply due to stress, I slowly started to change my life. I was discovering Living Lightly. As I shared in BODYLIGHTLY, I was learning to listen.
Meanwhile I was frantically researching, reading, learning. Anything I could get my hands on to discover what was going on. I saw doctors, specialists, a chiropractor, Natropaths, a physiotherapist, an ENT specialist, a diagnostician, an immunologist, a gastroenterologist.
Through years of trial and error, toward the end of 2010, between Living Lightly, creating a gentle, quiet, nourishing life for myself, and with the support of my incredible Chinese Medicine doctor and dietician, I discovered my natural spectrum and managed to stabilise my health. Commitment to a gentle daily routine of yoga, a gluten-free Low-FODMAP diet, removing all known allergens, minimising stress, and working for myself, I had days where I started to feel, okay. The fatigue was there, but my tummy behaved sometimes, and the inflammation and allergies calmed. If my routine was disrupted or I became a little run down, my body would instantly crash, so although I wasn’t getting better, I clung to my routine, knowing that at least I wasn’t getting worse, and that I would be rewarded by the occasional day of feeling okay. Which was an incredible new feeling.
But all of this was a sacrifice. I am a 20-something girl. I wanted to be out having fun with my friends. I couldn’t just relax, be spontaneous, travel without being super organised, go to restaurants, feel sexy for my gorgeous boyfriend, or go out partying. In Living Lightly I was discovering my sweet spot, and I know that I love the quieter, gentler, creative dreamer, Luxuriously Simple life. At times however, I admit I felt a little resentful, and sad that my poor health was forcing my to choose quiet over adventure.
I’ve always felt like a jumble of contradiction.
I felt disconnected from my body, because I couldn’t understand it. I wanted to feel safe and at home within my body, but it was doing so many scary things. I am sure that my true nature is relaxed, delightful, spontaneous, creative, however my illness necessitated that I adopted structure, rigidity and discipline. I felt so at odds with myself. And not only that, because my body wouldn’t allow me to fully inhabit true nature, I became the world’s most brilliant actress. I couldn’t admit to myself how ill I was becoming, because doctor’s continued to say I was not ill. So terrified, I soldiered on and acted the part of the most bubbly, endlessly energetic, healthy, vibrant version of myself I could imagine. Even my closest friends thought I was the Energiser Bunny. Of course whenever I had a moment by myself, I crashed. My body, holding on by a thread would fall apart around me, and I would try my best to nurture it back to health, so I could be ready for the next act.
Despite being surrounded by Love, I often felt alone. I couldn’t keep up with my friends. I was scared. I didn’t know what to do. I am an intelligent, educated, well-travelled girl. I am blessed to come from a loving family that has been there to support me through this journey. But I am not a doctor. There are limits to how much I could do to heal myself without understanding what was wrong.
This year, as I stabilised my health, I launched LIVELIGHTLY, which is everything I know to be my true self. But there has been a sticking point. A contradiction I could not reconcile. I am passionate about Living Lightly. About making conscious choices to create a beautiful, sustainable life. I am learning to listen
compassionately to my body, and showering it with the Luxuriously Simple Love it deserves. Although I am yet to discover the cause of my illness… I am gentle with my self. I dote on my body. I have a crush on every freckle. I am besotted by my pointy knees. I luxuriously lengthen and soothe through daily yoga. I walk slowly in the sunshine, my toes in the grass and dance on my trampoline. I delight in scouring my local farmers markets and savouring the delicious, nourishing produce. I luxuriate with natural beauty products. I sleep soundly and meditate (sometimes for a minute at a time!). And sometimes I don’t do any of these things.
Yet I still in many ways had to TELL my philosophy instead of SHARING my experience, because I was unable to fully inhabit LIVELIGHTLY. I could not embody everything I believed, because I LOOKED SICK. I wanted to share photos of me radiating vibrant health as I Lived Lightly and concise snippets of my days, but instead I had to write long, though beautiful meandering articles. I was here creating this beautiful life around me, but at the centre my body was falling apart. I was scared. Confused. Frustrated. I was ashamed. Because maybe I just wasn’t trying hard enough? Maybe I wasn’t doing enough? Maybe I was doing too much? Maybe I was just a big old wuss?
Enter Dr Mel.
So finally in September, after returning from Europe, my body having fallen apart yet again, I bit the bullet. A Love had recommended this incredible Holistic Medicine specialist, Dr Mel. He is ridiculously expensive. He is is Brisbane. It was a huge commitment. But my family and I decided that we would give it one last shot. Serendipitously, he had a cancellation, so my mum and I flew to Brisbane last week, to see meet new doctor. I couldn’t have prepared myself for what happened.
Dr Mel spent seven and a half hours together. He is a doctor and a surgeon, qualified in everything from Natropathy, to nutrition, psychology, and herbal medicine. He has studied healing modalities across the globe, and is currently being trained in hypnotherapy, just for fun. We clicked instantly over our love of learning, and building bridges between separate fields of knowledge. Dr Mel thoroughly combed my history from birth, my family history, every test I have ever received. He communicated so beautifully, with warmth and compassion. He ensured that we were on exactly the same page through each step. He conducted a two hour physical examination, from both a Western and Chinese Medicine approach. By the end of the day, I felt so safe, understood, overwhelmed, grateful and gobsmacked.
My body is in far worse shape that I had allowed myself to believe. Every part is damaged. Dr Mel’s initial supposition is that I have a genetic autoimmune condition which in and of itself could have been managed, however over the years it developed into severe food intolerance, digestive imbalance, malabsorption, and finally malnutrition, which developed into a patchwork of secondary conditions. Dr Mel sent me for a dozens of tests. Intensive pathology, x-rays, ultrasounds, bone-density scans, and allergy testing. At this point I know I have the autoimmune condition intersistial cystisis (which is different to cystitis, and finally explains 10 years of intense pain and shame) and significantly reduced bone density. Next week I will return to Brisbane for an interim treatment plan and to begin working with Dr Mel’s holistic pelvic physiotherapist to begin correcting muscle imbalances.
In February all the tests results will have arrived so Dr Mel will create an intensive holistic 18 month treatment program, which we will work through together to rebuild my health from the ground up. Instead of continuing my glam-nomad life, I will be living at home with my gorgeous parents while I heal. I am so blessed to have their support. And though I resisted the idea (for the merest of moments), being home is what I need after so many years of doing it on my own. I have already created my new sanctuary, a proper studio for me to create in. It feels amazing to be still.
I am so lucky to have found Dr Mel when I did.
My very own less grumpy, more adorable House. He was shocked that my previous doctors had attributed my alarming symptoms to stress, and that I had been able to stabilise my health as much as I had through Living Lightly. I would have fallen apart years ago had I not created this gorgeous new world for myself. But my body could not have taken much more, and if I hadn’t found Dr Mel now, I may not have been able to recover. As it is, Dr Mel says that within 3 months I may start to feel okay. By 12 months, I will be bursting with energy and he will not be able to contain me (this is the Danger period he joked). Because by 18 months not only will I feel incredible, but my body will be strong enough for me to fully inhabit LIVELIGHTLY. To Illuminate my World. To travel and Live and Love and adventure like I have always dreamed.
It is going to be a challenging 18 months. The treatment will be difficult. As nurturing as Dr Mel is, rebalancing is going to be difficult and sometimes painful. I have 26 years of imbalance to gently steer into harmony. Malabsorption and malnutrition, the catch-22 of not being able to absorb the nutrients I need to heal, in order to absorb the nutrients I need, and a cheeky immune system intent on attacking itself. I will have to be patient. I need to trust Dr Mel. I need to surrender control. I must accept that I no longer need to look after myself completely. That I no longer need to hide my illness and pretend to everyone that I am a vibrantly healthy girl. Because in 18 months time, I will be.
For a few days I was a rollercoaster of emotion.
So this week was huge. My world has changed entirely. I am actually sick (for the time being). I have an autoimmune condition, which I will need to balance throughout my life. If this had been diagnosed 1, 5, 10, 20 years ago, I would not be in the state I am now. I cried, overwhelmed with gratitude, I giggled and shone, suffused with the Loved of my incredible family and friends, I dared to touch hope for a future that I didn’t think I could have. Adventure. Sexytimes. Ease. Spontaneity. Becoming my true self. Love. Maybe babies?
And for the first time in my life, I allowed myself to feel the fear I had not allowed myself to succumb to. I shook with visceral anger. It was scary. But I needed to feel. To reconcile. To heal. From all the doctors that told me it was all in my head. That made me feel like I was crazy. That made me feel I needed to armour up and protect myself.
Allowing myself to feel all of these emotions, to have them flow through me, has been incredibly healing.
I am so ready for what is to come.
I am ready to ask and receive Love and support with Grace. To inhabit vibrant health. To embody LIVELIGHTLY. I am ready to embrace all that my illness has gifted me. My passion for Life, Love, Knowledge, Sustainability, Holistic Health and Design. My compassion. My sensitivity. I am so grateful. Autoimmune pushed me toward Living Lightly. I am discovered my sweet spot, my True Self, because of the challenges I have faced. I am so proud that I was able to create something so beautiful, when all this time, I have been so confused, trying to keep my poor little bod going, so that I could create the life of my Dreams.
So this Christmas I have a lot be grateful for. I am going to spend December dreaming BIG Dreams. Envisioning my 2012. I have a year to build my health and LIVELIGHTLY. And after that, a lifetime of being 100% me. izennah at full speed. I’m not sure the world is ready. But I am.
I am ready to heal.
I’d love you to share the LIVELIGHTLY Love. Simply link to ilivelightly.com xo
I would be delighted to Tweet you!
Are you an autoimmune Luminary? Are any of your Loves? Do you have anything in you life that has made you feel disconnected or alone? How are you learning to trust? To open up? To surrender to Love and Support? To ask for help? I would be so delighted to connect with you.