Thank you to all of you who have been reading my POTS story! In January 2014 I developed POTS and became bedridden and housebound. I am sharing my story to share what's worked for me, what hasn't, and to provide some hope. If you haven't already, you can read parts one, two, three, and four of my POTS journey on this blog.
In part 4 of my POTS story I concluded by talking about the best decision I ever made: to start my own "exercise program." I had become really deconditioned and had a lot of muscle atrophy from being bedridden that was adding to my already debilitating symptoms. Looking back, this moment was when I really reclaimed my health and took control over my situation.
I had reached the end of how far modern medicine could bring me at this time. I was terrified. I was convinced that I would never get better. It's here that I realized that I needed to take matters into my own hands.
Chronic illness is a lonely journey. I took this photo when I first started walking to my mom’s room and back all by myself. I remember peeking out the blinds of her bedroom window for the first time since I got sick. At first, I was proud of how far I walked on my own. Then, as I looked outside, my reality came crashing down on me. Outside I saw neighbours walking their dog and I remember thinking “they don’t know someone is trapped inside here. I wish I could walk a dog. I wish I could be on that side of the glass window.” The world was passing me by and there was nothing I could do about it. What first was a victory felt like something no longer worth being proud of.
Fighting my POTS symptoms and proper treatment was the hardest thing I’ve ever done. Reconditioning was definitely the second hardest. Trying to find that balance between pushing myself and not pushing myself too hard that I crash was definitely a process. What helped me was making slow progressions each week (like 30 seconds more on my recumbent bike or walking 50 more steps). I’d complete that goal every day of the week no matter how I was feeling and then increase my goal by a little bit at the end of that week.
After receiving an accurate diagnosis of POTS, I found myself stuck between specialists. If it weren't for my mom spending all of her time and energy fighting for my health, I don't know what I would have done. I would be referred to a cardiologist just to get there and have them say "POTS isn't a cardiac issue, it's a neurological one." I'd then find myself at a neurologist appointment just to get there and have them say "POTS isn't a neurology issue, it's a cardiac one." No one wanted to take responsibility for me, no one really knew how.
At this time, I didn't have the energy to respond to all of my loved one's caring messages asking how I was doing, so I made a closed Facebook group called "Sarah's Health Updates" to update everyone at once. I used this group for around a year.
In the mean time, we saw private specialists out-of-pocket, naturopaths, osteopaths, and every kind of alternative doctor we could find. We treated leaky gut syndrome and candida overgrowth (we later found out that I didn't actually have candida overgrowth until 2016 though). With every new appointment I found myself learning more but not feeling any better.
In the midst of these weekly appointments, severe suffering, anxiety (undiagnosed PTSD at this time), and a loss of independence, I found myself with a very financially privileged issue to have, but one that brought me so much anxiety. My Dad booked a trip for my brothers, my boyfriend at the time, and I to go to Hawaii in December 2014 . He booked this trip to us before I got sick. The trip took place 11 months after being sick. It took place when I was still mostly bedridden and almost entirely housebound.
You see, my family loves to travel. We’d go on multiple small trips a year and a big one every couple of years. I lived to travel. But I was absolutely dreading the idea of this trip. My mom kept reminding me that I could cancel but I felt tons of guilt at the thought of that. It would be my boyfriend’s first time out of the country and my dad wouldn’t get a lot of his money back. I’d cry to my dad about how worried I was and he kept saying (he meant well) “you’ll be better before then.” I hoped so but I had this deep fear and intuition that told me otherwise.
Months into the exercise program I made myself, I created a new set of goals that I taped to the wall beside my bed. These goals were to prepare me for that Hawaii trip.
I took this picture in November 2014, when I had already accomplished some of the goals.
There are a few tools that helped me with my reconditioning process. The first three are pictured below:
1. My EmWave 2 program (I now have the EmWave Pro which I recommend).
2. My FitBit clip (I now have the FitBit Charge HR).
3. These electric leg compression garments.
4. My TENS machine (I put the pads on my calves to help pump the blood away from my legs to prevent blood pooling and to strengthen my calves).
5. A recumbent bike.
6. Mullein tea: helped me a ton with the shortness of breath caused by reconditioning (and sometimes just POTS in general).
Every time I “exercised” I’d have a big CFS crash and have to be on oxygen. These were one of my scariest symptoms and experiences. It hurt too much to inhale and exhale on my own, because I was so deeply fatigued. My blood oxygen levels would drop, I’d forget simple things like my middle name or how to use my phone, and would just lie still, focusing on my breath for hours. The EmWave2 program ended helping so much with this. I ended up starting to use this helpful hand-held device every time I wanted to change positions (lying down to sitting, sitting to standing, going to an appointment), when I exercised, and when I crashed. It became so helpful that once I was with my boyfriend at the time at my Mom’s “retirement condo” at the beach (20 minutes away from where she lived and I was staying while sick) so I could have a change of scenery while bedridden (my cabin fever was so bad), and I forgot my device there this one time. I knew I’d suffer so much more if we didn’t go back to get it so my boyfriend at the time thankfully did.
Another resource that helped me immensely was this book "POTS Together We Stand." This book helped me figure out what to be tested for, how to travel with POTS, that a lot of my symptoms doctors couldn't figure out the cause of were actually caused by POTS, and it helped me understand what I was experiencing on an emotional level: grief (the chapter on grief inspired this blog post of mine). I highly recommend this book to anyone who has been recently diagnosed with POTS.
I continued to bounce from doctor to doctor, trying out every diet and natural protocol I could find, and searching for a cause of my POTS. I had private MRI’s done that showed multiple disc herniations in my neck, mild cervical stenosis, and mild to moderate scoliosis (we knew about the scoliosis since I was a kid though). It didn’t show anything that could be causing my POTS symptoms, though.
At this point I'd stay in bed the entire time except for when I was doing my "exercise protocol" (most of which was done lying down in bed), going to the washroom beside my room for 30 seconds max, or having a 30 second (not exaggerating, it was like a race) shower sitting down on the floor of the tub, or going to a doctor's appointment. My mom kept asking me if I wanted an electric wheelchair, or at least one that wasn't a transfer chair, but I didn't want one because I was convinced I wouldn't be sick for "that long." I ended up needing that transfer chair for almost 2 years, a lot longer than I ever anticipated, but I no longer need it.
All the health-related things I kept in my purse at the time. My symptoms were so unpredictable in 2014.
Every moment of every day in 2014 was spent trying to extinguish fires. I was exhausted beyond reason, I was mentally drained, I was traumatized, and I was suicidal. But no one but my mom and my boyfriend knew, and even then, they just saw the half of it. I had a journal at the time and wrote in it whenever I could muster up the strength to do so. I wish I had kept it but I ended up ripping it to shreds in 2016 because it was too traumatizing to look at. I begged God to take away my illness or let me die. Everything hurt. Everything was too much. But slowly, I kept on surviving, seeing no progress, having mental breakdowns, until slowly those steps added up. On June 28th 2014 I posted my first picture to my @StrongerThanPots Instagram. I had no intention or idea that it would become what it has today.