My POTS story pt. 5

July 12, 2018

 

 

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.

 

 

One day my boyfriend at the time mentioned that he was going to be doing something called “Freedom Session” at our church in the Fall. He had still been going to church and keeping me updated but I was unable to attend. I knew very little about “Freedom Session” but knew I wanted to join. I assumed it would be like the other short-term classes I had joined at the church in the past that taught me more about God and inspired me to feel closer to Him. I needed more of that so desperately. I was isolated (although I had visitors once every couple weeks), so out of it, and felt so distant from God. I was convinced that I needed to go and had no idea what I had really signed up until that first day in late September. But after my boyfriend at the time told me about this, being able to attend became a new goal of mine. I asked my pastors (who I was speaking to regularly during this time in my life. They kept me sane) how long it would be each night so I knew how long I’d have to sit up. It was around 2-3 hours. So I started training in Spring 2014 to sit up for 1 minute a day with the goal of sitting up for 2-3 hours in a row in Fall 2014.

 

On July 1st 2014 I had my first birthday since becoming sick. I was still mostly bedridden, but my family put up streamers and made it really special. I told everyone that I wanted to go to my mom’s “retirement condo” at the beach, the evening of my birthday so I could be bedridden with a different view. I had done this a couple times since becoming sick. Since my birthday is on Canada Day, I knew there would also be a Canada Day parade I would be able to see from bed.

 

I went there around dinner time. I was still so deconditioned that my boyfriend at the time had to push me in my wheelchair from the car to the elevator door, which was located directly beside our parking spot, and then from the elevator to the bed- which would approximately involve being vertical for 2 minutes. 

 

When I got there, 3 of my best friends surprised us there and had decorated my mom’s condo beforehand. My love tank felt so full. On a really hard day- my first birthday with chronic illness, my best friends went above and beyond to make it special. The energy it took me to be a passenger in the car, be wheeled to the bed, and say hi to everyone made it so I fell asleep. I woke up when someone picked up the fish and chips they ordered. I had fish and chips, lay on the balcony with my friends while we watched the Canada Day parade and fireworks, and went to bed. It was as good of a day as it could’ve been.

 

I ended up waking up in the middle of the night, throwing up everything in my stomach, because up until this point I had eaten only gluten-free, dairy-free, refined-sugar-free, and nonprocessed food. I also hadn’t touched caffeine since I got sick (but I introduced that later when the fatigue became too much to bear).

 

In July my mom went on a trip with her sister to China for a month. She booked the trip before I got sick and kept insisting that she doesn't have to go, but I would have felt bad if she cancelled, so I insisted she go. Both my mom and my boyfriend at the time had become my "safe people" -they were the people I physically relied on when I was too sick to take care of myself. They were the only two people who had seen it all. They could see in my face that I was experiencing a symptom before I was even capable of telling them, and they'd know exactly what to do. I was super anxious in the weeks leading up to my mom’s trip. My mom had scheduled it so my boyfriend at the time, my brothers, or my nurse would be home with me so I would never be alone, but I still was consumed by anxiety. I had developed a severe attachment to her in response to my physical dependence on her. I felt like a child and in some ways behaved like one. 

 

A week and a half into her trip and I started to feel more confident and less attached to her. One thing I’ve learned during my journey with chronic illness is that the only way to get over a fear is to face it. I felt fearless before developing chronic illness, but with each new trauma came a new fear. Throughout July 2014, I started going on lots of drives to places in nature so I could get a change in scenery. I was still mostly bedridden but I'd recline my passenger car seat and just stay in the car or we'd put a blanket on the beach and I'd lie down. I posted a lot of pictures on my personal Instagram account during this time that made my life look a lot better than it actually was. I did it for myself, because I thought I'd look back on the pictures of 2014 and not see through the obvious inauthenticity, and instead just see pretty pictures of times at the beach. But I also did it to keep up a pretty Instagram feed. I did this in one way or another until 2016 (my intentions shifted and became more authentic after this). It was my way of trying to subconsciously convince myself that my life was worth living. 

 

When my mom got back from her trip, we continued the search for better treatment. In August 2014 I finally got a disabled parking pass. I was hesitant to get one for the same reasons I didn’t want a wheelchair, but it proved to be extremely useful. Around this time, my mom and I had also asked my family doctor if she could request Dr. Levine's POTS exercise protocol from him and refer me to cardiac rehab. She did both. My family doctor forwarded my mom the e-mail Dr. Levine sent her, which included all necessary information, 2 weeks later. I didn't have my initial consultation for cardiac rehab until the Winter, but I used the information I had about the Levine protocol to help me guide my exercises. When I started Cardiac Rehab, I had just started doing the first pre-month of Dr. Levine's exercise protocol. The "pre-months" are dedicated for those who are b