Help Teresa Expand into Life Beyond Illness

Six years ago, my life imploded and I’ve been on a journey of reclamation ever since. My old life is gone for good, never to be found again. I don’t seek to replace it, but to lay down a whole new foundation that has the strength to hold a life of unknown possibilities.

I don’t want to dwell on the brutal details of the past 6 years, though they happened (scroll way to the bottom for details if you don’t understand my situation). My intention isn’t to evoke sympathy or pity for the struggles I’ve experienced. Instead, I would like to focus on taking the next step forward in my journey.

I am now at a place where I’d like to cut ties from the weight of the last six years. Some of that weight is tied to monetary debt associated with medical procedures ($8k Dental Surgery), therapeutic practitioners (Doctors, Trauma Specialists, Body Workers, Nutritional Counseling) and the cost of living without an income or health insurance for the last 6 years. I’ve managed to make it 6 years on no income, by way of extremely creative financing and the support of my parents, who at this point are just tapped out. It’s not a common retirement planning strategy to anticipate the cost of taking care of an adult child in your later years. My parents have been squeezed and stressed and knowing that I am the cause has been hard to bear. I always thought that by the time I got here, I’d be stable enough to re-enter the work force and close the debt loop. While I have made massive improvements and my ability to live unassisted is now confirmed, my capacity to take in work is still limited. I am at a place where I feel I could do part-time work from home and I am actively open to opportunities that would be a good fit. A big part of moving forward is regaining the function of meaningful work, which is part of what makes a person feel HUMAN.

My situation has put me in the awkward position of falling through the cracks that our social system was designed to catch. Because of this, the amount of social assistance I’ve received has been painfully minimal. We’re talking $192/month for food assistance and while I am grateful for every dime, it doesn’t even cover the cost of food for one person for a month, especially if that person has food sensitivities. Some of us think the government should take care of those who are no longer able to care for themselves. Some think the opposite. In my case, it doesn’t really matter what SHOULD happen, what matters is what didn’t happen. The failure of the system leaves me with the difficult task of asking for support from my community.

The support I’m requesting will go to cover medical and illness debt with a small portion over and above that to fund additional costs for trauma focused therapy, which I hope will support further stabilization of my nervous system and help to alleviate PTSD symptoms (which I haven't publicly talked about). My ultimate goal is to develop enough capacity to regain full function of my body and with the lessons learned, to be able to pass my resources and skills onto others who may find themselves in a similar place. This request is long overdue, but I couldn’t bring myself to ask before today. This is one of the most difficult things I've ever done for myself. It's hard to convince yourself that it's ok to accept help and that you are deserving of support. The reality is that I need help from my community and as much as I’d like to do this alone, I just can’t. I am humbled and doing my very best to receive whatever should come my way. Thank you in advance for your generous support, whether that be a monetary contribution or sharing a great job opportunity.

Much love and gratitude to all. 

*** The Details:  I’ve experienced what many have coined CFS/ME since 2003 but was able to manage working as I was trying different approaches to healing. I’d been told over and over by traditional doctors that nothing was wrong with me (even though they never thoroughly tested me). I sought help through alternative doctors and did find some relief and there was a period where I reversed many of the symptoms. 2007 – 2009 were good years and I moved out, worked more and started a long-term relationship. Eventually stress started piling on, my self-care waned, and my health started to decline again. Symptoms were getting progressively louder, but there was no choice to stop and rest. By 2013, my relationship was no longer sustainable, so I ended it and tried to focus once again on self-care and stress reduction.

I remember the period between 2013 and 2014 felt like I wasn’t really in my body. I was so lightheaded all the time, that I felt like I was floating. I’d had a test around this time that reflected really normal values, so I just kept pushing, in spite of feeling so bad. I assumed the test was more accurate than my own experience. By December of 2014, I was literally on fumes. I was barely able to get to work, was struggling with my vision when looking at my computer and having more and more dizziness and spells of half passing out. I was also experiencing these crashes where all the energy would leave my body and I’d lay there with air hunger for hours until it passed. Onward I pushed until the last week of December when I was trying to get the end of year billings completed for my company. I remember driving to work, getting about a mile and nearly passing out in the car. I had to turn around and go lay down. Later, I decided to have my mom drive me over and the same thing happened in HER car. I just started to lose consciousness from the movement of the car, and we had to turn around again. I was starting to worry by this point, because I needed to get the work done so I could take the 11 days off I’d been planning.

I never was able to complete my work, even from home. My body continued to unravel. I couldn’t even look at the computer screen without starting to black out, then it would happen in response to noise or strong smells. I couldn’t be near my cell phone without starting to black out and worst of all, I couldn’t even read words on a page without blacking out. The energy in my cells evaporated and I could barely stand. My legs felt like jelly and I had to crawl to the bathroom. I had to prop my hip against the vanity to wash my hands and then I would crawl back to bed. In my bed, I lay alone in the dark, quiet room without any stimulation. I couldn’t tolerate noise, so no television, no audiobooks, no sound of a human voice. I couldn’t read, couldn’t even endure the presence of another person in my room. I could smell EVERYTHING from a mile away. A person’s deodorant, the laundry soap they used, the body wash, lotion, shampoo, all fighting for my attention …. It was like being smothered by a putrid scent that made me want to vomit. The only stabilizing thing I could do was stare up at the ceiling and try to identify shapes. I made friends with those shapes, because they were all I had.

My mom had to call my boss and inform him of my condition. I couldn’t even speak to him to convey the instructions on how to do my job, which HE had to do. This was horrifying to me on many levels. My mom became the liaison between me and everyone else, including my doctors, who were kind enough to work through my mom over the phone. Many people might wonder why I didn’t go the hospital at this point…. I  couldn’t. There was no way that I would have made it there conscious. I was too sick and my nervous system too fried and I knew there was absolutely nothing they would have been able to do for me. One of the hallmarks of CFS is hypersensitivity to medications, which would have been the only tools in a doctor's bag. You also have to understand just how deep my distrust of doctors was by this point, because they had failed to hear me when I was begging for help and here I was... BROKEN.  A hospital was the last place I would have felt safe and I knew from others who had experienced acute states like mine, that there wasn't much they could do. I was already so dysregulated and I knew an emergency room or hospital would have only made it worse. They poke and prod you in a noisy, light filled room full of strong smells while they run the wrong tests  (which come back normal) and then send you home scratching their heads and labeling it “anxiety”. This wasn’t anxiety, it was full blown autonomic nervous system dysregulation, which mainstream medicine doesn't understand or have the tools to treat. My heart rate was elevated during the day (75 – 85) (my normal is 60) and at night would plummet to the (40’s). My blood pressure was tanked (85/50). I was in a cold sweat all day, feet frozen and clammy, but my body just drenched in sweat with absolutely no tolerance for heat. I had to be in a tank top with my windows open in January. I was in this condition for 10 days before I was able to shower. You have no idea how rank you can get until you experience 10 days of stress sweating with no ability to bathe.

I was also having strange convulsions at night or any time I tried to sleep. My limbs would flail about as I hit a certain stage of sleep. I would also get these electrical shock sensations that felt like someone shocked me with a cattle prod. It would zap me from my brain to my heart, almost like a defibrillator. It wasn’t pleasant and it created a lot of fear around sleeping. For years I would struggle with sleep and often woke up startled and gasping for breath.

My stomach was hypersensitive to nearly every food and in the quest to find something that was “safe”, I endured a lot of agony. I was also nauseated continuously for 10 months straight! It took me hours to finish a small piece of chicken, some broccoli and a bit of yam (this was a staple meal for a long time). I also had to eat constantly, because it felt like I was in a permanent state of low blood sugar. I’ve later learned this to be mitochondrial dysfunction, which is when the cells in your body aren’t getting energy shuttled inside. You feel weak and like there’s no energy in your whole body, but it’s deep and never alleviated by food. It’s a strange thing to try and describe.

There were countless other symptoms that were just strange. I twitched everywhere constantly. You could watch my body parts moving by themselves and it was creepy. I had esophageal spasms and had no idea what it was. It felt like my heart was boxing with my lungs. It took me a long time to explain that sensation. I had issues swallowing and my autonomic nervous system would get confused about the timing of swallowing so sometimes I'd just choke or not be able to get my throat to swallow.  I had (still do) horrendous brain fog that impacts my ability to form words or recall the name of an object. I'll have to go around the word and find other ways to describe something as simple as a "fridge" (the cold box that you put food in).

The most extreme symptoms went on for over 6 weeks. Eventually some of them started to dial down, but I was still coping with debilitating sensitivity, weakness, wired/tired sensations, spasms, twitching, issues with eating and constant muscle and joint pain. Taking a shower was a luxury that only happened once a week, because it took so much out of me.  I remained in a general sense of hell for many months and then a kind of stabilized state of deep discomfort for many years. I regained capacity very slowly to my great frustration. I wanted to rebound within 3 months (which was the time the federal government said my job had to be kept open). When that didn’t happen and I had to let my job go, it was terrifying and sad. I didn’t even get to say goodbye or clean out my own desk. I’d worked there for over 12 years and suddenly… poof…. gone. No more income, no idea of how to make it going forward, absolute uncertainty stared me in the face.

My constant focus was on healing and when I was able to start reading again (this happened in month 4), I slowly incorporated some books on healing. I did little things and over time gained more capacity to do slightly bigger things. I was open to just about anything and did some wacky things. I focused mostly on trying to reprogram the nervous system via releasing trapped energies through EFT and energy work, developing mindfulness (a strong mindset) and doing meditation. I also focused a lot on my diet and strategic supplementation. In 2018, I made the discovery that I had necrosis (bone infection) in my jaw bones from routine wisdom tooth extraction and I scheduled a surgery in January 2019 to address it. It was a tough surgery, but within 6 months I could tell something had shifted and I continued to make gains in my health over the following 2 years. The necrosis wasn’t the cause of illness, but it was a hefty contributor to the stress load my body was bearing, which has ultimately been what has dysregulated my autonomic nervous system.

Following the surgery, I was able to live unassisted for the first time since the collapse. It was not easy in the beginning, but I’ve continued to gain enough function to manage getting to the store, cooking, cleaning, interacting with long distance friends, making it to some family events, taking care of my brother’s animals (I currently live in a private apartment above his garage), doing small projects around the yard, etc. I still have setbacks and go through periods where I’ll be symptomatic again for a few days to a week and then I’ll stabilize again. I’m still coping with chemical sensitivities, brain fog, light headedness and I struggle with food smells. It’s hard for me to be in large groups with a lot of noise or intense energy. I still have moments when I’m driving where I feel like I might pass out, but I just do my best to get somewhere safe and either rest for a while or push to get home fast. I can manage being near the computer, but more than a few hours and I lose the ability to see the screen. This history has taken a couple of weeks to get down, partly because it’s still not easy to be on the computer, but also because laying out my past is hard to do. The worst of the lingering symptoms has been PTSD flashbacks. Someday I'll share more about this, but not today. Suffice it to say, going through this type of illness in and of itself has challenged me on a deep emotional level and I'm still working through it. The very nature of this type of illness necessitates isolation, which is an incredibly lonely experience.

This is where I am today and while I am deeply grateful to be out of the worst symptoms I once experienced, I want more. I want to live in my own home, to have a meaningful career and a long-term partner in my life. I would like to travel and be able to eat new and interesting things. I’d like to be able to exercise and hike again and I’d like to have in person friendships again. The pandemic has given everyone a small taste of what my life has been like for the last 6 years. Nothing much has changed in the last year for me, so I haven’t been especially phased by the social distancing. I’m ALWAYS social distancing!  I really just want to live a normal life and I’d like to help others who might find themselves in circumstances like mine to find an easier path forward.