Wednesday, 27 July 2016

Learning to Live Again - Lessons from RA

Well kids it appears I’m back! For long time listeners of my podcasts and members of my old website (don’t bother searching for it – it no longer exists) it’s been a long time between drinks as they say. The last time I reached out to you was in January 2014 and a lot has transpired since then. And I guess you’re wondering ‘what the heck happened to her?’ and the answer is too much to tell in this one blog so I’ll start with just this one thing.

In September 2014 I was diagnosed with aggressive Rheumatoid Arthritis and for those of you who know what that it is, I know you’ll be feeling for me right now. Fortunately it’s under control now and I’m in remission with only the occasional bad day, which I’ve since learnt to manage. For those of you who aren’t familiar with RA (as those in the know call it), it’s an autoimmune disease that can turn a once vibrant, lithe and energetic woman like me into a shadow of my former self.

I’d had recurring bouts of bursitis and some weird crampy things going on in a few joints for about 2 years prior to the diagnosis, which I’d just put down to stress. We’d been going through a bit of financial stuff and my mum had been diagnosed with a brain tumour and I had a baby still on the breast. So when I woke up one morning in July 2014 and my fingers wouldn’t extend like normal, I freaked out. We’d just moved back to Sydney so I thought it could’ve been from all of the packing and unpacking and dismissed it as such, until it kept happening.

In what seemed like the blink of an eye my whole body started to betray me. Wrists, elbows, shoulder, knees, ankles – they all kept seizing up and I was in diabolical pain. I kept my condition secret for a long time and just pumped up on the pain-killers to keep up appearances. Thankfully my work was such that I could be flexible and I just started working more and more from home, limiting my days in the office to once or twice a week. My brain was still perfect but my body was severely letting me down. 

I didn’t want to accept the diagnosis and went into a typical ‘this can’t be happening to me’ phase.

I decided I could beat it with all my knowledge of healthy eating, alkalizing, antioxidising and meditation. I stepped up my sauna and prayer rituals, went to a Chinese herbalist, took a bucket load of natural supplements and did everything to stay in a state of gratitude but to no avail. Finally after about eight months when I could no longer walk for more than a few meters, was unable to raise my arms high enough to wash or comb my own hair, my joints and body swollen like a balloon, desperately sleep deprived, I had to come to a place of acceptance. I remember clearly the day when I bit the bullet and decided to go back to my Rheumatologist.

 I was languishing on the couch in absolute agony when my then 4 year-old son came over to give me a hug. His gentle touch on my arm was like a fire poker glowing at full steam, and I winced and screamed out in pain. “Mummy, will you ever get better again so we can hug properly?” That was it! My life long distrust of pharmaceuticals had to come to an end and I realized that I needed to do whatever it took to rejoin the productive and functioning part of the human race.

To cut a long story short, I’m now on weekly Methotrexate injections, Arava and Prednisolone. I’ve managed to reduce my Prednisolone down to 2mg a day from the original 10mg and my body is finally returning to normal. When I first started on the treatment regime, I gained 10 kilograms in what seemed like a heartbeat. I couldn’t fit into any of my clothes or shoes for that matter, my face had puffed out and my hair started to fall out in handfuls. I used to joke with close friends and family that I couldn’t go out before because I couldn’t walk and now I didn’t want to go out because I looked like a mess!

Every day now as I have done since the diagnosis, I take magnesium, high potency Vitamin C, Vitamin B and astaxanthin. Almost every meal has some combination of turmeric, garlic, ginger, capsicum, cumin, fennel, greens, greens and more greens. I use my infrared sauna as often as possible, meditate, get Vitamin D from small doses of natural sunlight and keep up with the inner gratitude work. And the funny thing is I actually am grateful now for the RA as it’s given me a whole new perspective on what living actually means. Sure I was compassionate before, sure I had empathy for others, I was a kind, decent, loving human being but the RA has made me an even bigger, better person.

As an example, I used to get really frustrated with ‘slow-walkers’ as I had knick-named them. I’d think to myself ‘stop schlepping about and get a move on, walk as if you have purpose, stop shuffling along’ until that one day I had become a slow-walker myself. As I shuffled slowly up the hill for my weekly GP visit, each step an agonizing feat of will, chanting to myself ‘you can do it, you can do it’ with each footstep, I realized the obvious. Not everyone who walks slowly is doing so because they have no purpose, or because they’re lazy. 

I said a silent apology to every person I’d every admonished in my mind and felt a humility like never before. I was deeply ashamed of myself for being so quick to judge and felt embarrassed that I had never realized the small ways in which each one of us can be haughty and unfeeling.

Thankfully now I’ve regained my quick step but each day is a gift that I can truly treasure. When we are put into a position of simply being grateful for the smallest things, like moving without having to will our feet to take the next step, the achievements in our lives take on a far greater depth of meaning. Like being able to dance again! What an absolute thrill that day was when on New Years Eve 2015 we danced up a storm and I felt the freedom of a bird in flight. You can only imagine the joy I feel when all three of my kids can now scramble all over me and hug me all at the same time. I can run, work a 12 hour day, cook up a storm and I feel stronger than ever before. I just need to listen to my body and take it easy when the early warning signs appear.

I looked in the mirror today and saw my old facial features returning, my hair starting to thicken out again and low and behold I actually fit back into a pair of the jeans that had sat lonely in my cupboard for over two years. What had not so long ago felt like a descent into hell has actually turned out to be a gift from heaven; the gift of being able to feel true gratitude at simply learning to live again, laugh again, dream again.

And to close today’s blog I’d just like to share one more thing. When I started uROk back in 2002 I argued with my team that it had to be about You not Me. They all insisted it had to be about me so that I could connect with you on a deeper level. I never wanted to be a guru or have people ‘follow’ me. I wanted to help others connect with their own inner strength. I didn’t see myself as a role model. I felt inadequate to put myself up there as that. I didn’t want you to ‘do as I do’ but to do what’s right for you, to follow your heart and find your own inner light.

I’ve now come to understand that by sharing my stories, my less than perfect self (which by the way is imperfectly, perfectly me), my struggles and my pain, that in some small way, it does help you to find the way back home to yourself. To reconnect with that part of you that is more than just your body, your job, your family, your bank balance or any of that other stuff. That part of you that is uniquely, wonderfully you.

So fellow travellers on this magnificent journey called life please know that whatever ‘happens’ to you, in every moment there really is a choice and you can make it at any time and learn to live again, believe again, dream again. Small steps in the right direction are all you need to take. It’s working for me and I’m back, so please feel free to post your comments and I’ll be here for you to laugh with, cry with, hold your hand, lend an ear or share a shoulder.

Until next time love and light,