AIP Stories of Recovery: Phoebe’s Recovery from PoTS and Myalgic Encephalomyelitis

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AIP Stories of Recovery is a success story series about regular people from the Autoimmune Protocol community who are changing their lives using the protocol. Each month a new person is featured and readers have the opportunity to discover all the different health challenges that are being overcome by folks just like themselves on the same path. At Autoimmune Paleo we hope you’ll be inspired by, empathize with, and learn from these stories. If you are interested in sharing your story, please let us know by filling out our interest form.

Phoebe’s road to recovery has been winding. With two chronic illnesses (postural tachycardia syndrome and myalgic encephalomyelitis) affecting her heart and nervous system, her symptoms ranged from numbness and pain, to migraines and a racing heart. Food was a big part of Phoebe’s recovery, but it definitely wasn’t the only part. Read on find out what Phoebe’s health looks like today, and to see the list of tools and practices that changed her life. 

What health issues are you dealing with, when did they begin, and how long did it take to get a diagnosis?

My journey into chronic health begin at the age of 20, in 2012, after a doubt of Dengue fever, a subtropical virus carried by mosquitoes. Two weeks in hospital saw my body dragging its heals back into the normality of my previous life. Despite this I battled to keep my previous life while in my final year of university. Cycles of pill popping, crying, bouts of depression ensued in order to move forward with my life, to employment in the investment world.

While employed I spent five months walking a path of misdiagnosis, disbelief from the people around me and cynicism from doctors brushing my list of symptoms off as ‘post-viral’ or ‘too much stress’. In May 2014 however, I was diagnosed with two invisible illnesses. PoTS, or Postural Tachycardia Syndrome which is an abnormality function of the involuntary nervous system.

In a diagnosis of PoTS, an individual must experience a substantial heart rate increase of 40 beats per minute (BPM). Resting, my heart rate was 67 BPM while standing it was 118 BPM.

M.E., or Myalgic Encephalomyelitis, is a chronic fluctuating, neurological condition that causes symptoms affecting commonly the nervous and immune systems.

Describe what the lowest point on your health journey was like.

In December 2015, I had infections of my chest, eyes, sinus, and bladder sitting on top of my chronic illnesses. My illness, PoTS, choose to strike while I was weak. Laying in pitch black silence for my migraine, I realized I had little to no feeling past my thighs. I knew this was a possible symptom in extreme cases of PoTS. But I thought I was stronger than to ‘succumb’, to let this illness get the better of me. Every part of my life previously I had seen positive outcomes from my determination and mental strength. Yet here, my ignorant mental strength and determination to continue fighting in the way our culture tells us, I realized, had quite literally crippled me.

Low, humbling, silent days of being in my darkened bed ensued. Crawling to the toilet and crying from the pain of making this journey once back under the covers, felt weak. It was demeaning to the person I previously was and the values I had held. All these emotions were however preoccupied and clouded with the brain fog of the invisible illnesses and the heartbeat of my migraine.

What challenges influenced you to look for a solution? Basically, what was the tipping point?

It was really at this lowest point the changes began. For a time it felt as if I was drowning in grief, yet I was still living at the end of each day. As Jennifer Brea put it, “What’s worse, dying or feeling like you are watching your own funeral everyday?”

Skirting so closely to wanting death, I realized I was on my lowest playing field to date. This illness had taken friendship, relationships, employment and my so many of my passions. But in a dark twist of fate, it all felt oddly liberating. It felt as if I had nothing more to lose. It was in these days I decided that for the next six months I would change everything. Having sacrificed so much already, to sacrifice my whole life seemed almost easy.

After diagnosis and before this thought I realized I was maintaining a life of spinning plates, partially to appear strong to others. I changed my perspective, such that giving things up was not weak, but strong. Later I read Frankl’s book Man’s Search for Meaning discussing why some survived through Auschwitz and others did not. He concludes that suffering itself is of no substance. It is, in fact, the person’s reaction to the suffering that places meaning in the suffering. This reaction is still a freedom the victim controls.

When you found a protocol to help you heal, what was it and what was your first indication that it was working?

Changing my attitude to life: Learning to put less of myself into other people’s opinions. The simplicity on paper of this shift was in fact the hardest learnt habit. Simply put, giving your energy to other people, their thoughts and feelings, results in having almost nothing left for you. Therapy and reading shone light onto just how much of my energy went on concern for my friends and how they valued me. Giving that up was on a constant seesaw balance between uncomfortable to whole identity crisis painful. It felt at times as if I was peeling away the skin of what made me, me. Underneath this skin who was I? It felt vulnerable and incredibly lonely at times, but if I hadn’t done that, I don’t think I would have recovered and be the person I am now. Shedding a stigma, judgmental, self-critical skin it feels as if I have grown a healthy, fresh new attitude-changing skin.

What resources have you used on your healing journey so far and how did you find them?

I had a few easily adopted things that I used to help:

An electric massager: Coming to my aid when I was dancing between being too weak to stretch but too sore to sleep. It also really helps my headaches my body not being so tight. As I was gaining strength and doing more exercise such as walking and yoga, this helped muscle pain. A useful tool to use while I was teetering on post-exertion malaise to at least avoid body pain.

CBT: Killer in changing my frame of mind to learn from ‘failure’. Helping my capability to see health challenges as obstacles rather than set backs. Like Henry Ford famously said, “I have not failed 700 times. I’ve succeeded in proving 700 ways how not to build a lightbulb.”

Acupuncture: It had the ability to give me a boost of energy for the next 24-48 hours. I found this through my diagnostic doctor.

Chinese herbs: Through my acupuncturist who was also learning Chinese medicine and so was referred to her teacher. A pretty disgusting brew that I had to cook up and down but made a huge impact on my health and overall well being. To the point that my partner at work could tell when I had a drink and the days I hadn’t.

Meditation: Online, it just keeps me sane at work at 3pm. I would lay down on the floor and meditate (that’s how desperate I was). It was all to try and work through all the stigma and misunderstanding surrounding my illness in the office.

Hypnotherapy: Through my CBT nurse. It works wonders on making me see a lot of the pressure I put on myself (which makes my symptoms worse) was me!

Yoga: Even sitting upright with my legs crossed was hard at the start, but it has become a fantastic alternative to exercise and is very floor based.

Swimming: Super helpful in the later stages and still today in keeping my fitness with PoTS.

Food: The first thing I tried. I was VERY strict with my diet. It was a part of the foundation of my health.

Massage: Taken from my intense training dad who recommended an electric massager which turns out to be incredibly helpful when you are too weak to get out of bed for blood flow and muscle pain.

Audiobooks: These help to change my frame of mind and have the power to sit with my thoughts without drowning in them.

I would say for every element that helped me, I tried 4-5 things that didn’t work. I would say I have tried 100+ routes to better health. Around 7-10 impacted my health in a positive way.

Did your doctors suggest any treatments that you rejected and if so, why did you choose to try other methods?

I was recommended graded exercise therapy and was sent to an autoimmune physio for further exploration. While I was there she asked me to run for 120 seconds so she could monitor my heart. I could hardly walk for 120 seconds let alone run. She then recommend that I should try and run for 120 seconds a day. Now far healthier seems so tiny, but at the time it used to cripple me. A week into doing this I gave up. I had two more visits to my doctor in which he said very plainly to me, we don’t know what to do with illnesses like this and don’t have the resources. He then proceeded to give me a list of everything his previous patients had used to help their illnesses and said he was on board with trying all alternatives, recommending herbalists and Chinese doctors. It was at this meeting I saw just how little the medical field had put into chronic illnesses like mine. I appreciated his honesty — it was the first step into exploring health myself.

It was at that point I learnt that western medicine is incredibly good with acute injuries but they did not have the wealth of knowledge or the resources needed to overcome chronic illnesses.

It can seem like our lives are consumed by a chronic illness, but there is so much beyond those struggles. What brings you true joy right now?

I feel as if my previous illnesses have given me the ability to recalibrate my personal thoughts. Jodi Ettenberg eloquently quoted a friend, “It’s smart to never compare your insides to someone else’s outsides.”

This sums up perfectly how I now think whenever I consider how much my illness has taken of my previous life and when I compare my life to others. Instead I think of what it has subsequently given me. The ability to control my thoughts and reactions is the most liberating, joyful element of my battle with chronic conditions. As many friends and family have told me, I now I have an old soul encased in a youthful exterior; I believe my reactions are part of this.

The things my old self would grumble over seem so trivial now — needing to get out of bed in the morning, being stuck in traffic, reading notes for work to develop my skills at work. I find joy in being able to get dressed standing up, to being able to drive to a different location other than my house, to being intellectually challenged without migraines as a result.

I feel now while my body is still somewhat weakened, my mind and my ability to control my thoughts can endure far more than my body ever previously could. My joy is knowing the strength I have within my own mind.

If you want to learn more about Phoebe’s heath journey, you can read more on her blog

Would you like to share your Story of Recovery? Let us know by filling out our interest form.

About Grace Heerman

Grace Heerman is a writer and website designer based in New York City. Through her business Said with Grace, she helps coaches clarify their message and create authentic websites that actually bring in business. Here at Autoimmune Wellness, Grace writes book reviews, manages blog content, and organizes Facebook publishing. She is an avid traveler and loves spending winters in Asia. You can connect with Grace and learn more about her writing and design work on her website, Said with Grace.


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