I am a Mom Diagnosed with Ankylosing Spondylitis after Having a Baby.

Last week, ten years of questions and confusion around my back pain were finally resolved, and all of the “hot spots” in my body (that were seemingly unrelated) all came together.  I was diagnosed with Ankylosing Spondylitis (though I do still have herniations and injuries from a car accident.)  It explained SO.MUCH.IN.MY.LIFE.  Particularly the crushing fatigue which is leaving me struggling to make it past lunch time, the absurd brain fog (forgetting which way to drive home and unable to think out of the box) and the pain.  Ick.  The pain.

Mostly, I felt relief and quite happy.

First, happy that I wasn’t crazy and second, I felt a bit validated to be honest!

For the last…well… forever…  Since my 20s – I have been trying to rehabilitate what I perceived to be injuries and was beginning to wonder what the heck was going on and why my dedicated work in rehabilitation, corrective exercise, nutrition and mindfulness weren’t giving me the results I expected *if* it was an injury I was dealing with.  I had gotten my mind into an optimal state, lost 50 lb, redesigned my lifestyle, yet I was still dealing with exhaustion, pain and strange “incidents” in my body.  Two of which left me debilitated and sent me to urgent care, after having to call my daycare provider to help me off of the floor.  Yup, it was that crazy.

At rheumatology last week, after the initial glow of “ahhh, this all makes sense now” I did had a few sad days.  And that is expected. And totally okay.  You just don’t want to sta in those places.  But you do have to move INTO them and THROUGH them.  It is so important to honour whatever emotions we experience and let them be without judgement.  If we don’t, guess what, they’ll get pushed down into our body somewhere.

There were two reasons for those feelings of sadness.

First, I was a bit taken aback at the medication I had to start to cool the inflammatory jets and get back to a comfortable place.  I went from NSAIDs, fish oil, and a few other multis… to 4 prescriptions and DMARDS.  I’ve always been a bit averse to taking prescriptions, but now I realize the systemic nature of my disease and the damage that has occured in my spine & joints.  In all honest, I am now glad for (and appreciative of)  western medicine and its ability to pause the progressive disease.  It is not a panacea though, and I definitely see it as simply an extra tool in my tool kit 🙂

Since the birth of my 3rd baby I have been very symptomatic and have definitely been in a flare up for the most of the past year, but in previous years, I made some progress in deepening my knowledge and extending the time between flares.

2008-2010 was a very, very bad time in my back pain / body issues life, and I look back and am so glad I am not quite that bad now, and that I had a relatively decent run between 2011 and 2016.

2016 – 2018 have been quite up and down though.  I have had some big stress, and big illnesses not to mention, 3  pregnancies, so this is definitely a stage where my body is kind of in a bit of turmoil.

The second reason I felt sad after my diagnoses, is that I felt sad for all of those years I had battled against myself and tried to “beat down” back pain with a “suck it up” and “warrior” mentality.  I used to look at my body as an enemy to fight and then conquer and have mastery over.

I moved away from this mindset only in the last few years with the birth of my beautiful little babies.  It is, indeed, one of the greatest gifts they have given me.  Self-love, being gentle, slowing down and surrendering to the universe.

Since the arrival of these three sweeties ( 3 children in the last five years) I’ve changed.  I feel a deeper love and appreciation for my body, what it has done and what it continues to do.  I love it now, but I do feel sad for how poorly I used to treat it.  I don’t feel regret, but I do look back with a bit of sadness for all of those years I spent hating it, controlling it, and trying to gain mastery over it.

In 2018, I don’t see pain as something to be crushed, but something to be embraced with love, because it is our body’s messaging system.

It’s like when my 3 year old comes up crying. It sounds crazy to for me to tell him to STOP CRYING THATS ANNOYING, repress his emotions and ignore him / tell him to suck it up.  Of course I wouldn’t do that.  None of us parents would!

I would embrace him, connect with him down on his level and ask what is happening, how he feels and how we can work through it (while reassuring him that is okay to experience those emotions.)   So why would we take the former approach to ourselves when our body is communicating with us through the language of pain?  Yet, we do.

I wrote an article on managing back pain (note, this was written when I thought I was had the perspective of repairing injuries not an auto-immune disease)  with young children, and what I’ve learnt helps me over the last ten years – and you can see that the improvement all comes from a place of loving and appreciating my body. Not fighting it.    

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In fact, one of my favourite meditations over the last few years of deep immersion into meditative practices, is the inner smile meditation. To feel gratitude and fill my inner world with happiness, gratitude and the warm flow of love, is something my body desperately wanted (and did not get) until a few years ago.  I always recommend insight timer as it’s free, there’s so many meditations you can choose from, and an entire category dedicated to chronic pain management, inner smile, gratitude, etc.  They range from sparkly noises and tweeting birds and woowoo style, all the way to practical no-nonsense style.  There really is something for everyone. You just need a phone, “do not disturb” mode on, and the app open.

On this blog, it is my intent to openly share some of the things I have learnt on my long back pain journey and share the process of implementing tools.  Even though I am in a current flare-up, I truly believe I have found many of the right tools to manage Ankylosing Spondylitis and as I re-implement them in my life with new perspective, I hope to share with you the journey.  I also hope to connect with other mamas with AS as well, so we can support each other in our growth and elevation.

I am early in this journey though, and there are many more tools outside of the realm of western medicine that I am excited to learn about, and try out.  I hope to share these as well!

 

 

 

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