My Recovery Story

How I Got Sick

I have been sensitive to smells as far back as I can remember. Most of my childhood memories have smells associated with them, and I remember having adverse reactions to certain fumes starting when I was five years old. Reactions to smells continued to be a sporadic, mild issue throughout my youth although I had no idea that this was a syndrome that had a name. In 1992, in my early 20s, I started work in a sick building and developed mild multiple chemical sensitivity (MCS), which did cause worrisome problems — the cause for which remained a mystery.

Then, as my symptoms increased, in 1995, I had a series of exposures, culminating in chronic carbon monoxide poisoning (which primarily affects the brain). I became disabled by severe MCS and chronic fatigue syndrome (CFS). I had symptoms like swollen glands, fevers, asthma, headaches, dizziness, nausea, insomnia, impaired cognition, and crushing fatigue from then on. I moved to the country in 1998 and enjoyed a small improvement in my overall functioning for a year or so, which nonetheless meant resting most of the time.

I used a mobility scooter to get around outside my house as well as a carbon filter mask and oxygen. Inexplicably, after a couple of years in the country, I started to get chronic migraines which eventually were an almost constant symptom, with one migraine often lasting for weeks at a time. This was in addition to all of the other MCS and CFS symptoms of exhaustion, cognitive impairment, insomnia, and of course severe symptoms after an exposure to chemicals, many foods, and dust, mold, cat dander, etc. Eventually I switched from the mobility scooter to a powerchair.

Sharon lies in bed. Lighting is dim. Her eyes are shut, and her hands rest on her belly. There is an infusion pump on her leg, and a dressing and PICC line can be seen on her left biceps.

In 2007, I was bitten by a tick and ended up with multiple tickborne diseases — Lyme, babesia, and bartonella. I became so ill that I was nonverbal for much of the time for several years (intermittent apraxia and spasmodic dysphonia), was often unable to control my limb movements, and was so weak and in so much pain that I could not leave my bed except once a day and couldn’t do things like brush my teeth, feed myself, or go to the bathroom. The migraines got even worse (my doctors and I eventually realized that the migraines were from previous, undiagnosed Lyme disease), and I also developed intense sensitivity to sound, light, or touch, so that I wore sunglasses all the time and experienced pain and nausea at the slightest touch or talk above a whisper. The worst part was the arrival of mental illness, including agitation (a state of simmering anxiety and anger that lead to eruptions of explosive rage), mood swings, an odd sort of depressive despair and hopelessness, poor impulse control, and changes in personality, including loss of creativity.

I was in bed round-the-clock for years, using a commode next to my bed because I couldn’t get to the bathroom, and on the rare occasions I left bed, using my power wheelchair. My friends and family believed I was dying, so rapid and severe was my degeneration. I eventually responded to aggressive antibiotic and antimalarial treatment — oral, intramuscular, and intravenous — which lasted several years. This led to me being able to do things like brush my teeth and go to the bathroom by myself, but I was still in bed basically full-time and needed help to bathe or dress, and all of my cooking, cleaning, driving, errands, and housework done for me.

How I Got Well

In August 2013, I borrowed a copy of the Dynamic Neural Retraining System (DNRS) DVDs from an MCS support group I belonged to. DNRS is a neuroplasticity program developed by Annie Hopper for people with MCS, CFS, electromagnetic field sensitivity, and fibromyalgia. I do not think I would ever have purchased it for myself because I had been hearing about DNRS for years, and it sounded like total baloney to me. I believed that nobody with severe MCS or CFS like I had could recover (although I had hoped for years that antibiotics would cure me of tick-borne diseases). But because it was free to borrow, and because I was curious, I decided, reluctantly, to watch the DVDs. (Note: I strongly encourage people with MCS, CFS, EMF sensitivity, or fibromyalgia to check out DNRS, however, neither I nor my website are in any way affiliated with DNRS. I am just very grateful that it exists because it transformed my life.)

One of the aspects of DNRS that I’d reacted negatively to before I understood the program was the idea that my illnesses could “just” be in my brain. I knew a lot of my problems were neurological — the cognitive impairment, sleep disturbance, dysphonia, and mood problems obviously were brain-related — but so many of the other problems seemed to be digestive or immune system related. I knew DNRS involved a cognitive/behavioral component, and to me that translated as “all in your head” — that my illnesses were not real or were all psychological, which I knew was not true.

What I learned from watching the DNRS DVDs — and what I’ve come to understand better by reading several books about the brain and neuroplasticity — is that the brain controls many aspects of bodily systems that go far beyond “psychology” and the conscious mind, yet that by using the conscious mind — thoughts and behavior — we can alter these (unconscious) activities of the brain!

One very clear example of this phenomenon is people who are totally blind and read Braille. The part of their brains that sighted people use to process visual stimuli (the part of the occipital area that is often called the visual cortex) is not getting used to process visual stimuli, so it takes on other jobs, such as processing sound, word retrieval, and memory! (This may help explain why so many of my blind friends seem so much more on the ball than me!) Further, the sensorimotor area of the brain devoted to the [PDF] finger they read Braille with enlarges quite a bit. But what’s even more interesting is how quickly such changes take place: In a study of sighted people who were blindfolded around the clock for a week, their “visual cortex” started to reorganize itself within five days!

The hypothesis underlying DNRS is that disorders like MCS, CFS, and fibromyalgia are caused by an insult to the brain that leads to disordered functioning of the hypothalamus, amygdala, and hippocampus. Because these parts of the brain regulate and affect other systems and organs in our bodies, if they are malfunctioning, it can affect a person in numerous ways that might not seem neurological.

How can CFS/ME, MCS, fibromyalgia, or post-treatment Lyme disease be related to the brain? Read my page, Making the Limbic System Connection.

Like a stroke survivor or other survivor of brain injury, my disabilities were caused by insults to my brain, including carbon monoxide poisoning and brain damage caused by pathogens (bacterial and parasitic infections from ticks). These injuries led to disorders in many bodily systems:

  • Immune system: allergies (histamine response) to many things I inhaled (mold spores, dust, cat dander) and ingested (wheat, milk, eggs, apples, grapes); keloid scars (an overreaction of the immune system involving spontaneously building scar tissue); swollen lymph nodes, chronic sore throat, and fever; Hashimoto’s thyroiditis (my immune system creating antibodies to my own thyroid hormones)
  • Respiratory and dermatological: asthma and chronic cough; burning in lungs and mouth; mouth sores (canker sores); rosacea, rash, and flushing
  • Musculoskeletal: pain, swelling, discoloration, and impaired mobility of muscles and joints
  • Neurological: migraines; hyperreflexia (overactive reflexes and tremors); apraxia and spasmodic dysphonia (speech disorders); hypersensitivity to sound, light, smells, and movement

These problems were observed and documented by physicians via physical exam or tests, such as blood test, intradermic allergy test, etc. In fact, soon after I started my recovery program, I got a lab report on my blood that had been drawn several weeks earlier. The report found that on a cellular level, I had major abnormalities. My understanding is that my results were so abnormal that they are normally associated with people with malignant tumors. (My doctor and I did not think I had cancer; we just saw these results as a reflection of how ill we knew I had been at a cellular level.) I just decided to ignore those results and continue with my neuroplastic recovery program, believing by that point that when my brain was no longer sending out the wrong signals to the rest of my body so often, my cells would get healthy again. As far as I know, that has turned out to be true!

Applying Dog Training to My Own Brain

Another facet of the DNRS program that was compelling to me was that it was a training program with a big behavioral component. It contains both operant and classical conditioning aspects. Well, behavioral modification and training had been my passion and my practice for over fifteen years! That’s what dog training is! So, I approached that aspect of it with confidence and great curiosity. Time and again during the months that followed, when I was trying to figure out how to deal with a challenge that arose, I’d think, “If my brain were a puppy, what would I do?” And then I’d know how to proceed.

Beginning DNRS was the biggest hurdle. It was very frightening to even entertain the hope of recovery! I had not dared hope for almost two decades. And parts of the program challenged beliefs that I had held, without question, for decades, too. But I took the plunge. I had to try.

In the first few days, it didn’t make me worse, so I kept going. I kept learning about neuroplasticity and adding more and more aspects to my program that I thought would be fun and effective.

Why was fun so important?

I believe strongly in humane training — not just for dogs, but for all beings — for two reasons:

  1. Witnessing training that causes pain and distress to the learner causes me pain and distress, too.
  2. Humane training is more effective because a learner who is enjoying themselves and feeling a sense of mastery in the situation is much more likely to learn well and to stick with the program (versus a learner who is scared or confused). One clicker trainer aphorism is: Respect the organism!

Since I am an organism as worthy of respect as much as any dog or child or lab rat, I tried to make the program humane for myself. I made it as fun as possible, and that was very effective, just as making training into a big game is effective for dogs!

Sharon sits cross-legged on the floor. Barnum stands in front of her and kisses her on the chin. Sharon has her head tilted back and is smiling, with eyes shut, leaning away from the tongue. Barnum has curly, fluffy black hair.

How I Am Doing Now

I am now able to go where I want and do what I want! I can be around perfume, smoke, cleaning products, and lawn chemicals without adverse reactions. I am able to be as physically active as I like and enjoy the emotional and physical benefits of exercise. My head is clear; my memory is good; I can read, think, and problem solve. I can talk whenever I want. I do not have migraines, nausea, dizziness, vertigo, fevers, sore throats, muscle weakness, tremors, or insomnia anymore.

My immune system has also been in transition; for the first seven months of my recovery, I was getting a lot of viruses! I had eight colds and a case of hand, foot, and mouth disease between September 2013 and March 2014, after almost never catching anything for 18 years. (I had about four colds in the previous 18 years, total.) I was averaging about one cold a month after I started recovery, ranging from a cold every three weeks to every six weeks. For several months I also had many canker sores in my mouth, almost continuously. By the summer of 2014, the colds and canker sores had mostly gone away.

I attributed the frequency of these viral infections to two things:

  1. Much greater exposure to many more germs because I’m leaving my house. After handing out candy at Halloween, I got hand, foot, and mouth disease, which is usually a disease of children. I also noticed a sharp rise in colds after I started swimming at the YMCA every week.
  2. My immune system normalizing. For many years, my immune system was so upregulated (examples are Hashimoto’s thyroiditis, spontaneous keloids, and the development of so many allergies) that even if I made out with someone who had a cold (or even a cold sore) or someone prepare food for me who was coughing and sneezing, I didn’t catch anything. When I began to recover, I seemed to catch everything that was going around! My partner, friends, and assistants do not catch my colds, though. I viewed this as a temporary situation while my immune system got stronger and normalized” again. I also reminded myself that I am much more functional with a bad cold now than I was when I had chronic illness.

Otherwise, I am spending my time on

  • continuing my recovery,
  • living a normal life,
  • preparing for my new career in dog training, and
  • working as a neuroplasticity coach.

These are all really big things for me!

Continuing my recovery involves a few activities. I am still doing a bit of brain retraining when old issues arise, and I am continuing to work on balance and proprioception, which I think are the only areas where I really notice I am not yet where I want to be. When I need more internal support, I meditate every morning.

I do still have some achiness and stiffness, especially in my legs and feet, which might be residue from Lyme disease or from muscle fatigue from deconditioning. This is decreasing in time, so I am just continuing forward with all my activities and not letting it stop me.

I am still withdrawing from a few medications. This has been a long process, and while some medications have been easy to stop — I just stopped taking them or reduced the amount and noticed no difference — others have caused a lot of withdrawal symptoms. I am currently withdrawing from Elavil (amitriptyline). I have posted about my experience withdrawing from Depakote and Klonopin. I manage withdrawal symptoms with a wide range of strategies, but the most important seems to be a lot of vigorous exercise and yoga. I try to make sure I have an hour or two per day for swimming, yoga, dancing, or a mile or two long walk.

Sharon in a black bathing suit with white trim stands in the ocean surf up to her waist with her arms in the air.

I also need to get eight hours of sleep every night. My sleep schedule shifted radically when I started my recovery, and then when I am in withdrawal from a medication that sometimes disrupts my sleep, too, so I have found it very important to give my brain and body the time to rest and regenerate that I need to continue to recover and live a healthy and full life.

Taking care of my hands and feet has been important, too. I experienced issues with my wrists and hands shortly before I started my recovery, and having improvement from stretching my wrists and doing OT exercises was actually what launched my recovery. I continue to do exercises for my wrists and hands as needed.

After so many years of not being on my feet, my recovery has caused very big changes in my feet! When I started walking, I got plantar fasciitis in both feet and tendinitis in my ankles. I’ve done a lot of PT and stretching for this, and I got new, supportive shoes and then orthotics for fallen arches and bunions. Body work and massage have helpled, too. I have had to vary times of standing and walking with times to rest my feet. Now they are doing much better! They are stronger and less inflamed.

Doing “normal” things that most people take for granted is still new to me — washing my dishes, doing my laundry, making meals, running errands, walking my dog, gassing up my car, and driving. Even bathing myself, and dressing in clothing that fits and doesn’t have holes or stains is an adjustment. All of this takes time and planning, which has taken some trial-and-error. (At first, I was so excited to be able to do anything I wanted that I tended to schedule my day so full that I didn’t have time to eat or wash dishes.)

I am apprenticing with two animal trainers to achieve my goal of becoming a professional trainer. Twice a week, I assist one of the trainers with classes for dog owners on basic obedience and manners, Rally obedience, and other behaviors for the well-mannered dog. I enjoy these classes immensely! I also sometimes observe or assist with working with shelter dogs to make them more adoptable or other private clients.

The other internship is with a trainer and behaviorist who works with dogs and cats. I observe behavior consultations and coaching and training sessions with clients, assist her with the behind-the-scenes running of her business (feeding and exercising boarding dogs, doing paperwork and filing, washing dishes and scooping poop), and do some hands-on training with the dogs. I am also completing a curriculum she designed with homework assignments and lots of reading on learning theory, ethology, human interaction, and the business side of being a trainer. I am learning a lot and always look forward to the work.

I am on Social Security’s Ticket-to-Work program, which requires that I meet various work and vocational goals over the next months and years. I am doing this by apprenticing as a dog trainer, with plans to get certification in the field, and by earning a substantial portion of my income.

I am also working as a neuroplasticity coach. This has been very challenging and rewarding work, requiring all my quickest thinking, confidence, emotional and mental skills, and memory retrieval! Sometimes I speak to someone one time to answer questions and help them think about next steps, and with other people, we speak every week. I use my Nonviolent Communication (NVC) skills, my knowledge of learning theory and behaviorism, and my knowledge and interest in neuroplasticity to provide support and help map out detailed training programs. It feels very satisfying for me when I can help someone improve their life for the better. The best feeling is when I work with someone for several weeks and see their life transform! The more I do it, the more I am able to relax and trust myself to do a good job. It’s also very hopeful and a relief to me to have a little more income.

More about my recovery and related topics:

To contact me with comments, questions, or to book a coaching session, please use the form below. Thank you!