Where I’m at in My Health Journey One Year Later
Last summer I wrote a post about some of the health struggles I was facing. I wanted to share an update with you sooner, but with everything else that’s been going on, it didn’t feel quite right. And, to be honest, it takes a whole heap of courage for me to open up personally on the blog, so I was dragging my heals a bit too.
Although we still seem to be in the Covid tunnel with only a glimpse of light at the end, I thought I’d take some time to bring you up to speed on where I’m at in my own personal healthy journey. I feel like we all have something we’re struggling with in life at one time or another and, perhaps, my story will provide some comfort in feeling that we’re never truly alone.
Grab a cup of coffee or tea, and let’s get started…
Where it all began…
As some of you already know, I was forced to take a step back and shift my focus to healing over a year ago. On our family vacation in Mexico at the beginning of March 2019, I noticed a sudden change to my vision after waking one morning. After arriving home, the blurriness wasn’t getting any better, and day after day I was experiencing feelings of being not quite right. Maybe I picked up some sort of virus on my travels? As in the past, I thought it would eventually pass. Except, it didn’t.
Over the next couple weeks, I started having terrible neck pain, tingling in my arms, hands and legs, as well as headaches, fullness (sometimes fluttering) in my left ear, and periods of dizziness and vertigo. Something was definitely off, so I went to see my doctor.
After some discussion and requisition for blood tests, my doctor sent me to a vestibular physiotherapist to see if my ear crystals had become dislodged and misplaced. This causes BPPV or Benign Paroxysmal Positional Vertigo. Often a simple maneuver is all that is needed to rectify the problem. After some investigating, BPPV was ruled out as the cause. Okay, back to the drawing board.
In the meantime, I had also gone to my optometrist. After some tests, she noticed a change from my previous scans in one eye. She suggested further consideration, and referred me to an ophthalmologist.
As the days passed, my symptoms were worsening. I was also becoming very sleep deprived, often waking with tingling and numbness in my hands throughout the night. There were even a few days when the dizziness was so bad, I found it nearly impossible to get out of bed. And, on days when I could, focusing on anything was very challenging, especially in the morning. It was time to stop pushing through and trying to carry on with life as though everything was normal. I had to take a step back from work.
After my initial bloodwork came back normal, my doctor referred me to a neurologist and we also discussed getting an MRI in the interim. A few scary possibilities were mentioned, so I decided to go ahead with it. After a few painstaking days of waiting for the results, my MRI came back normal.
Although I was extremely relieved, I felt like we were back to square one. I knew what I was experiencing wasn’t just in my head! So what was it? Of course, the mind goes to worst case scenario in these types of situations. Can you relate?
Fast forward a month, and I had my first appointment with the ophthalmologist. He, too, noticed something strange with my eye, so further tests were ordered. Let’s just say it was a thorough process that required several pupil dilations and strenuous eye tests over several days that made me feel even more terrible. Ugh!
At this point, I was feeling frustrated and fearful. I was becoming dependant on my husband or son to drive me most places. Simple tasks like grocery shopping and tending to my flowers were very difficult, and most of my time was spent doing little at home. I was trying to keep a positive perspective, but months and months of going through it all had worn me out. It took everything in me to hold it together. At the time, Shawn Mendes’ song “It Isn’t in My Blood” became my theme song.
Finally, I got in to see the vestibular neurologist, who also happened to be a neuro-ophthalmologist. He had a strong inkling about what was wrong, but ordered several more tests to be sure. Here we go again!
After additional MRIs, bloodwork, vestibular tests and eye tests over several months (our healthcare system moves very slow), we were finally able to get to the bottom of it. Apparently, I was experiencing chronic vestibular migraine.
When I heard migraine, I thought it was a misdiagnosis. A bad headache? No. However, with vestibular migraine, headache isn’t always part of it. After some digging, I realized it was pretty much bang on. And because my symptoms had gone on for months and months without addressing them properly, my brain was stuck in somewhat of a “dizzy loop”. Oh joy :(
After my vestibular migraine diagnosis…
My approach to healing from that day on has been about learning as much as I can, then implementing what feels right to me. After researching the heck out of it, I couldn’t believe how many people all over the world have this condition or something similar. A switch flipped in me from feeling powerless to empowered.
Thankfully, I’ve been able to learn from a community of others who have healed or are on their way. Not feeling alone and being able to draw strength from others has been a game-changer.
For me, living more balanced each and every day has been the key.
Here are some of the key changes I’ve made:
- Although I’ve been a fairly healthy eater for years and years, I cleaned up my diet even more. I first started by eliminating gluten, then removed known migraine trigger foods listed in the Heal Your Headache program (with guidance from The Dizzy Cook). Bye bye regular coffee, chocolate and nuts to name a few (ugh)! Recently, I started adding a few foods back to see if my body can tolerate them. It’s been a slow process of trial and error. And, where foods fall short, I’ve added some key supplements.
- Similarly, I’ve also weeded out most products that I use on my body and in our home that contain known toxins. I’ve been sensitive to chemicals for years (especially cleaning products and candles), but didn’t realize how badly they were triggering my symptoms.
- I have found some form of exercise for strength, balance and flexibility to be essential. Rolling, yoga and band exercises seem to be the most beneficial. Now that I’m feeling more steady, I’m adding more cardio, such as tennis and hiking.
- Practicing mindfulness is part of my daily routine. I had dabbled in journalling and meditation on and off in the past, but have made them a regular practice this year. I started with Deepak’s 21 Day Meditation Challenge, which grew into other forms. I also do body scans. Both are tremendously helpful when it comes to feeling calm and safe.
- Getting plenty of rest is hugely important to me. I go to bed each night and wake around the same time each morning (even on weekends). I also give my brain time to wind down in the evening, which means limited screen-time and more soaking in the tub. And, on days when I’m feeling extremely tired, I don’t hesitate to take a nap. This condition is highly energy-draining.
- Taking time to do the things that bring me joy has probably been the biggest change. Before, if I wasn’t being productive, a little guilt would set in. Sometimes life requires a little “nothingness” too. Sometimes feeling joy needs to be the main purpose. And, if something doesn’t feel right for me, I let it go. I’m much kinder to myself.
- On the flip side, I’ve learned that pushing and challenging myself are necessary for growth and a healthy brain too. So, on days when I’m feeling steady, I take more risks both mentally and physically. As we get older, we don’t always accept the dare in front of us. Listening to Brené Brown’s Unlocking Us podcast, especially this episode, has been very helpful.
Needless to say, this holistic change in mind, body and spirit has been really good for me. The combination has done wonders to stimulate my parasympathetic nervous system, which I’ve learned is essential to healing.
One big obstacle to overcome after my diagnosis was letting go of the WHY. What brought this condition on in the first place? Did I do something to cause it? Was it my staircase fall? Was I too stressed out? My doctor said it’s usually a number of factors and not one isolated incident. Genetics play a big role too. It was time to stop blaming myself and feeling so guilty. Sometimes we take credit when credit isn’t due.
Looking back over the years, there were subtle signs…
Where am I at in my health journey now?
Sometimes it feels like the healing process has been slow. It’s been well over a year now since it started, and I still have days when I feel not quite right. It’s my nature to want things to move quickly. However, I’ve been told by my doctors it usually doesn’t work that way with this condition. So, I draw from my faith to practice patience and resilience.
I’m happy to report the majority of my symptoms are much, much better. If I compare where I was a year ago to now, I’m miles ahead. I went from feeling like an astronaut walking down the sidewalk last summer to feeling quite steady on a moderate level hike in the mountains just a few days ago. To me, that’s major progress both physically and mentally. Yay brain!
Because I have the predisposition for vestibular migraine, it may be something I’ll have to manage for the rest of my life. Weather is a big factor and, unfortunately, I cannot control it. We experience extreme fluctuations where we live, so I take it day by day.
I feel like I have a sound recovery plan with a great support team in place, so bit by bit I will get there. There is also new research in this area that helps connect the dots, which makes me feel optimistic. The more we know, the better the outcome.
It’s not to say that I’m happy about the dizziness or blurred vision, but I do strongly feel that this condition and the experiences around it pushed me in the right direction. I’m much better at listening to my true self and blurring out the “shoulds” and “worries” of the world. I focus on how I want to feel and the things that are meaningful to me. It’s about letting go of the rest.
For me, there’s no going back…
xo,
Oh wow, Shauna! What a journey! I’ve been struggling with weird skin issues that I’m convinced have to do with peri-menopause and hormonal fluctuations but I have a crotchety doctor and getting an appt elsewhere is such a challenge currently. So I try to tweak my diet and focus on exercise and Pilates to ease symptoms. Wishing you a recovery from this!
Oh, so sorry you’re going through this Barbara! Thankfully, I found an amazing GP who really listens to my concerns. Honestly, I’ve been fortunate with all of the doctors I have seen throughout this process (and nurses). They have all been genuine and haven’t ever made me feel stupid (as I have experienced in the past with others). We definitely have to be our own advocates, learn to ask the right questions, and do the best we can to take care of ourselves. I have found it usually isn’t one thing that’s the cause. Sounds like you’re approaching it right by taking care of it from your side, and I’m sure your instincts are bang on. Fluctuations in hormones seem to cause all kinds of havoc! But, maybe it’s time to search for another doctor? I understand it’s a pain though. Good luck, and thanks for caring. I appreciate it so much! xo, Shauna
Wow, Shauna. What a scary journey. I am so glad you have gotten to the bottom of what this is, and are being good to yourself through the process. It’s so easy to be hard on ourselves, especially when we feel like we haven’t been ‘productive’. That one is such a kicker because honestly, what does being productive ultimately mean? My husband always reminds me that one is greater than zero. You are such an inspiration Shauna! I’m thinking of you and wishing you all good things for now and to come. xo
So thankful we got to the bottom of it! I’m still learning a lot, and as I said, it’s trial and error. It always seems to be the mental side that is the most difficult. Guilt has a way of creeping in, but then I remind myself that health has to be #1. What do we really have without it? Thanks again for your love and support. xo, Shauna
I just discovered this article but I’m so happy I was able to help in a small way! Wishing you all the best as you find that new normal. :)