Updated: Jun 21, 2019
If Autoimmune diseases had contracts, the terms and conditions and fine print would be absolutely, indescribably detailed and unbearably long. I have had so many bizarre symptoms and signs with this latest flare. Knowing medically that autoimmune disease can cause pretty much ANYTHING, and then experiencing it first hand has been quite a journey.
This relapse has been exceptionally tough on my body. I am so unbelievably lucky to have such a phenomenal support system that has pulled me through so many dark moments and have fought for me when I didn't have the strength to fight for myself. Support like this is invaluable and I can only hope that all of you other fighters have an incredible support system of your own. There were moments where I felt I may actually die, moments where I wouldn't have minded if I did, purely because it would mean that the suffering would stop. There is no part of me that wants to die, there are so many things I still want to do and so many experiences I still want to have. However, through this experience, I have reached a beautiful level of acceptance. There was still a part of me that was in denial, a part of me that was holding onto the hope that this diagnosis was a mistake, that it was nothing too serious and I was just a bit sick. There was a part of me that chose not to believe it, because denial is so much easier than acceptance. Well, there may be the tiniest piece of this denial left, but all in all, I have finally accepted that I have Wegners Granulomatosis - and I wear it with pride!
My disease has become systemic - meaning it is now manifesting more widely in my body. I have another bout of episcleritis (an eye condition that looks similar to pink eye/conjunctivitis), I have arthritis in my knees and plantar fasciitis (inflammation of the thick band of tissue/ligaments in the bottom of the foot). In other words, my body is now attacking my joints and eyes. I have a lot of autonomic instability at the moment too, and this is causing terrible hot flushes, night sweats, weight loss, fatigue, and malaise - indicating that my immune system has tipped into excessive overdrive.
When I met with my Prof yesterday and asked him about all the symptoms I'm experiencing, he said: "I'm not sure if you know Cayla this but you have Wegners, anything can happen!" in a joking tone. Having a team of doctors who you connect with, who are capable of making you feel safe and supportive and most importantly who believe you, is absolutely essential, am I right? I know the symptoms, I know the insane list of things that can happen, I've studied these diseases a hundred times, but until it's actually happening to you, it’s hard to fully comprehend how bizarre it all really is.
It really does make you feel like you're going crazy. You second guess yourself constantly, try to convince yourself you're overthinking everything and being dramatic. It's so easy to fall back into this thinking easily because it's what everyone has convinced you of for so long. How often does it cross your mind that you are losing your marbles and have become completely bonkers?
But you ARE NOT being dramatic and you ARE NOT overthinking things. Anything and everything can happen with these diseases, so it is absolutely vital that you pay attention to even the smallest change that may occur. You have to be so in tune with your body, so conscious of what you are feeling, so connected that the slightest change is picked up. That's how you have to be in order to take back some of the control.
Despite this disease really wreaking havoc in my body right now, I accept it. I accept my diagnosis and all that comes with it, but most importantly, I accept that this is now my life. I will not let it control me, but I will embrace how it has changed me. I am stronger than I thought possible, I am more in tune with my body than ever, I respect my body so much more, I have a new view on life and death and how this very moment is all that really matters, I am more courageous, I am surer of myself and my boundaries and I'm learning more and more about who I really am. To be honest, it feel so bloody good to just let go and accept the things you cannot change. It's like a weight has been lifted off my shoulders and I cannot advise it enough.
Over the past couple of weeks, this sense of acceptance washed over me, like calming waves of the ocean washing away my worries. Being a control freak has made this all the more difficult to deal with. I have tried to control ever aspect of this journey so far and I have finally come to accept that it is completely out of my control. There are elements that I can take control of - diet, mindfulness, exercise, medical protocols, heat and cold therapy etc - which can help stabilise or down regulate the inflammation that is rife in my body are the moment. However, at the end of the day, there is only so much you or I do, the rest, well que será será, what will be will be. So just let it be.
I have to take more time off work, potentially even defer the entire year and go back next year, hopefully, when I'm healed. And you know what, I didn't even bat an eyelid over the decision. Being so sick and feeling so horrendous, I now fully understand how essential it is to put myself and my health first. There is absolutely no way I could go back to work in the condition I'm in currently. I cannot expect to heal and help others if I have not helped and healed myself first.
I'm writing this as I on a plane right now to Cape Town. I'm heading down to see my Integrative Doctor and to have a whole bunch or alternative and complementary treatments to try and overcome this flare. I'm being as proactive as I can be to ensure I get myself back into remission. Taking control of the aspects I can get my grasp into, knowing that if I do my best, hopefully my immune system will surrender and stop attack my body. You have to keep fighting, no matter what.
I will continue to stay positive, to use these challenges as a lesson that I can grow from, and to help others learn and grow too. This disease is not a curse, it's a really warped blessing with an abundance of lessons. What I know for sure is that this journey is molding me into a much better doctor. I know that when I do get back to work, my whole approach and experience will be so different. As my brother always says, " Doctor-patient or patient-doctor?" and finally, I'm happy to be both.
Don't fight the process, you'll just end up frustrated, exhausted and defeated. Rather go with the motions, embracing each challenge and grow with every lesson. Don't forget to live in the moment, it's the only one you've got.
And to all my healthy followers, don't take your health for granted. Cherish you miracles that we call bodies, move them, nourish them and be grateful that they give you life. You never know when that could be taken away.
Sending love ... from the new and improved,