My Adventures in Healing

CFS/Fibro/POTS

My Adventures in Healing

MY STORY

Welcome! I’m assuming chronic illness has brought you here, so first I want to say I see you and you’re not alone!

I resisted telling my story for a long time. You know how it is: you don’t want to be defined by an illness. Besides, it’s even hard to get the medical community to take you seriously, right? I’ve decided to tell my story now because I realize the only thing that kept me hanging on to hope by my fingernails was other people’s recovery stories. So, it’s time for me to give back.

Fibromyalgia/CFS/POTS (postural orthostatic tachycardia syndrome) at their core are caused by nervous system dysfunction, usually triggered by a physical or emotional trauma. Mine was triggered by a medical trauma. In the spring of 2014 I had my first posterior nosebleed. This is where a major blood vessel in the back of the sinuses ruptures and requires emergency surgery. I’d lost so much blood, it took me two months to be able to walk again. During this time, they discovered I suddenly had high blood pressure. We decided to get me off the antidepressant I’d been taking for four years (Pristiq) in case that was the cause. Even though I tapered down over two weeks as recommended, it wasn’t slow enough. The day after I took my last dose, I woke up feeling like I’d been hit with the flu, only I didn’t recover.

After being housebound with severe pain and fatigue for weeks, my family doctor sent me to a rheumatologist. I sat in his office in tears with legs that felt like fifty pound logs from the fatigue…logs filled with biting red ants from the nerve pain. The joints in my hands hurt so bad I could barely grip the steering wheel to make it to his office. He diagnosed me with fibromyalgia and told me to keep exercising. (Helpful, right?)

I went home and spent the little energy I had researching this monster thing that had taken over my body. Slowly, in horror, I began to realize that this was everyone’s story. There is no “expert” in the medical community. The advice to keep exercising is the only advice they have to give. There is no relief. There is no cure.

I don’t remember much about the next six months. I know I spent a lot of time in the bath or pool because being in water was the only time the pain was bearable.

In May of 2015 I had my second posterior nosebleed. This time the first surgery failed so they had to go back in and block the main arteries in my face to stop the bleeding. The nerve pain from that surgery was excruciating but I survived. The physical symptoms were compounded by grief and depression as I tried to deal with my new boundaries in life. I could no longer walk my dogs, ride bikes with my kids, do the grocery shopping, etc. This is about the time I started watching other people’s Fibro/CFS recovery videos like it was my religion.

Over the next year and a half–with a combination of medical interventions and holistic practices–I began to heal. I’d say I was about 80% recovered (I still had exercise intolerance but could make it through a grocery store trip) when in October of 2017 I had another posterior nosebleed. This time, I had an ENT on call who knew my history so we made the 45 minute drive to his hospital in St. Pete. The first surgery he tried also failed, and I was back in the hospital four times over the next two weeks. Finally, the last bleed was so severe, he had no choice but to crack open my sinuses to reach the main artery. I ended up needing a blood transfusion and spent three days in ICU, but again, I survived.

This experience shattered my sense of safety and dysregulated my nervous system further. I developed severe anxiety attacks, tachycardia that prevented me from sleeping at night, couldn’t digest food and was diagnosed with PTSD. In May of 2018 I ended up also being diagnosed with POTS after a five day hospital stay because my heartrate would shoot up to 180 bpm when I tried to stand. I spent two months in a wheelchair and my brain was intolerant to any stimulation (light, sound, movement, reading). These activities would cause such bad crashes, I couldn’t open my eyes or process thought for days. My body felt like an unchargeable battery and I truly thought I was going to die.

Now it’s the end of 2018, so where am I? I’d say I’m about 50% recovered and feeling hopeful for the future. Not hopeful that I’ll get my old life back, because I don’t want that. This battle with my health has changed me. It’s changed the lens I see life through and it’s so much more beautiful now. I know it’s hard to hear when you’re in the middle of suffering, but there are gifts in this darkness, and that’s what I will mainly be focusing on here. Sure, I’ll share some of the things that helped me, but there are plenty of how-to-recover resources out there. My main goal is to encourage you to view your own healing journey in a new light. To give you a fresh perspective, to help you cultivate hope and gratitude while you’re still in the middle of the storm.