ESTIMATED READ TIME: 17 MINUTES
Recovering from Chronic Illness: The Big Picture
Read Part 1 Don’t Be a Superhuman
Read Part 2 A Good Healthcare Team
In the summer of 2002, I had a very bad car accident that initiated the process of becoming chronically ill. 11 years later, I was still struggling with these illnesses (fibromyalgia and chronic fatigue syndrome/ME) and doing everything I could to not give up and keep seeking answers and health. You can read a little more about where I was in May 2013, 11 years from my initial diagnosis, from my post (You are Not) BROKEN. This is a blog series about that journey and what I did along the way that ultimately led be to being healthier than I was pre-diagnosis. DISCLAIMER: Fibromyalgia and chronic fatigue syndrome are very unique and complex illnesses. I am not suggesting that my path to wellness will work for others. I am hoping by this series that I can encourage others who are ill on their own journeys to wellness. Please be sure you have a good doctor and consult with them!
rom a western medicine perspective, we often seek to resolve a symptom, be it through medication (which either helps the body heal or just masks the symptom) or physical treatment/intervention. But what happens when your symptom list is endless and growing in every direction? Either you end up on more medications/interventions than you can count, or you seek the root cause(s) and aid the body in recovering from there. I was both of these cases.
My illness journey started with a car accident and continued to worsen and “deepen” through years of circumstances that weren’t conducive to healing, despite the incredible doctors and practitioners that were working with me. Some of my contributing circumstances were very personal, but I’ve decided to start writing about them in hopes that even just one person out there can be helped along in their quest of healing. I have waited years to share some of the things in this post, and do not write it with any amount of animosity or mal-intent. But there was someone, also chronically ill, in my life that shared some of her struggles along the way and what she shared with me gave me a sobering view into my own future and thus helped me change my course, and I’ll always be grateful for that. Please read the following with this in mind.
Ok, deep breath. Basically, here’s what happened:
- (2002) A car rear-ended me and pushed me underneath the one in front of me. Not only did I suffer some significant musculoskeletal injuries (herniated and bulging discs and good-ol’ whip lash), but it FREAKED OUT my nervous system. Suddenly being under another car is really scary.
- I traveled across the country to see one of the world’s best osteopaths that I knew through my gymnastics connections. I made serious progress from this treatment, but quickly relapsed upon returning home. My nervous system stayed freaked out for a long time. My docs talked about how it was all they could treat really for the first 6 months because my sympathetic nervous system was so engaged that it wouldn’t allow the tissue to be treated or hold treatment.
- I was sooooo determined to keep my injuries from turning chronic that I initially over-treated, not giving my body enough down time between treatments. This turned out to be counterproductive in two ways: first, I was overwhelming my body with treatment, and also, the stress of getting to all of my appointments (8/week) as a injured college student with an over-loaded course schedule contributed to keeping my nervous system raging. I needed rest and I wasn’t getting it.
- When your body is in constant “fight-or-flight” mode, things easily snowball because everything is “life or death.” This is when it’s common to start developing allergies (normally the type that short-circuit your system back into crisis/fight-flight mode, not the anaphylactic type) to anything and everything, which I did (but didn’t know it until many years later). When you eat or are exposed to something and your body is literally trying not to be killed from a nervous system perspective, the body often associates that food/substance exposure with its crisis mode. MUST BE THAT APPLE THAT IS TRYING TO KILL ME!!! MUST AVOID APPLES!!! THEY ARE DEADLY LIKE GRIZZLY BEARS!!! Interestingly, this is apparently commonly seen with caretakers as they are always present and the body starts to think they might be the problem. Yes, you can be allergic to people.
- Spend long enough in this crisis mode and not only will you possibly develop allergies/sensitivities to anything and everything, but all other systems in the body start freaking out and malfunctioning too. This is part of why fibromyalgia/chronic fatigue syndrome/ME patients have such varied symptoms that seem completely unrelated. Everything just stops working.
- Meanwhile, my physical injuries were real and were getting worse. I was put on lots of meds, but still, no rest. I pushed through my courses and took medication to try to just make it through each day. I would drive myself to school and pick up a friend on the way. As soon as I got to class, I would take my medication which would allow me to sit through class (I also had electrodes all over my body for pain management and carried around tempurpedic seat cushions to each class). My friend would drive me back to his apartment after our classes and I would crash until the meds wore off and I could safely drive again. I did this for a whole semester.
- I had a few lawsuits going on with insurance companies trying to get my doctors paid and they were terribly stressful. They lasted 7 years (I finally gave up) and certainly contributed to my stress-load and inhibited healing. To this day, I detest the phone and mail because during those years, phone calls and mail = stress and unresolvable issues.
- (2003) At this point, my quest to not have chronic illnesses ended with chronic illnesses. And once you are treating chronic illnesses and chronic pain, it’s a whole different ballgame than treating acute injuries. I knew I had turned the corner into chronic territory, but didn’t fully “buy” my diagnosis of fibromyalgia. I had heard it was a “poo-poo” diagnosis and so I kept looking for another reason I was so ill.
- I never stopped treating (see what I did here), but I shifted my approach. I was doing the best self-care possible, but making very little progress, if any at all. We had to get down to the deepest rooted causes at that point to be able to unravel the rest. Most of my doctors seemed to agree that there was this quest to find this key aggravating factor, but no one really knew what it was. The general idea was that there was still something that was either aggravating my nervous system, I potentially had leaky gut, a latent virus and a rewired hypothalamus.
- Life continued in this way for years. Through those years I graduated from college (2005) and started working, at which point I was doing relatively well. I was in a great relationship and remember enjoying life, as well as being able to work long hours without totally crashing. The next year I changed jobs (2006), the following I got married (2007) and within a few months everything started to get much much worse. I was given more medications to try to keep me in my job. I was stressed and depressed. Things at home weren’t healthy either, so I had no place of peace or “safety” in my life (I was physically safe—I’m not insinuating abuse or violence here). The prognosis and diagnosis was not good and there was seemingly no hope of ever being healthy again or having my life back. At 25 years old, I felt and functioned like 80.
- (2009) In search of someone that could help me change course, my osteopath sent me to a world-leading fibromyalgia/chronic fatigue syndrome specialist in North Carolina. We booked our flights and hotel and took off to Charlotte, NC to see him. He was the first to tell me why my fibromyalgia and chronic fatigue syndrome diagnosis actually made sense and fit all of my symptoms, which was at least incredibly validating. I wasn’t crazy, but I was definitely very ill. He also told me that in about 7 years of “doing things right” I could be better/recovered. VALIDATION and HOPE.
- Rest became a theoretical focus at that point, but with my demanding job, it was not very feasible. I had to keep my heart rate as low as possible to avoid post-exertional malaise (PEM) and crushing fatigue, but my resting heart rate was only a few beats a minute below my limit. I increased water and salt intake to try to increase my bottomed-out blood pressure. I had a handicap decal to limit even walking across the parking lot to my office building, as that walk could kill my entire day. When I had to climb stairs (I had two flights in my house), I was told to stop mid-way each flight to allow my heart rate to go back down before continuing to climb.
- (2010) I finally stopped working due to the strong exhortation of this specialist (Dr. Lapp at Hunter Hopkins Center). Where the year before he told me I could recover if I did things “right,” this time he was telling me I was borderline irrecoverable and had to stop everything and rest. Scary decision, but it was imperative. I was supposed to just be out for 6 months, so my husband temporarily took over my Creative Director position. My specialist also put me on yet another medicine (my 8th or 9th I was taking at the time) as I was not coping emotionally with the state of my health, my lack of progress, and now the loss of my ability to work and be independent— I knew I was not in a good place. SETBACKS.
- For the next 4 years, I almost never set an alarm clock. And the few times I tried to get up early for a special event or even a day trip, I ended up going back to bed in tears as I just couldn’t function. I wasn’t remotely able to go back to work in 6 months. I slept most days til 11:30a on average, 1-2pm on a bad or “recovery” day. My life was finally reduced down to rest and doctors appointments.
- (2012) But that wasn’t enough. I was still ill and losing ground, just with less pressure on me to perform much of anything on a daily basis. My list of symptoms was around 35-40. Luckily my husband had taken over most of the household tasks like cooking and cleaning. A chiropractic evaluation revealed that my spine, and thus nervous system, were severely impacted, and structurally resembled that of an 80 year old. We did some nerve conduction tests as well and for the first time, I had an image that corresponded to some of my pain and dysfunction. Red everywhere. MORE VALIDATION.
- We started treating with chiropractic adjustments and started to see some improvements in the images and diagnostics, but still little improvement in my symptoms. One of my doctors was convinced there was “Something I was putting in my body that was pissing it off” (her words exactly), and so she wanted to run allergy panels. It came back with me allergic to nearly everything, and especially all the super healthy foods I was trying to nourish my body with. I was put on an elimination diet which meant I could not really eat healthy and balanced nutrition since I had become allergic to all of it.
- Through more testing with another doctor, we found I wasn’t just allergic to foods, but all sorts of things. Like both acid and base digestive enzymes. So, even if I wasn’t allergic to the food, I was allergic to the processing of every. single. thing. that I ate. We started treating these types of things that were constantly present in my body (also, some hormones and neurotransmitters), and while my diet improved, my health was only showing tiny improvements. There was still something else.
- (Early 2013) We had tested and treated so many things that I was starting to be able to identify when I was having a reaction (since my body was no longer constantly reacting to ever-present things like hormones and enzymes) and isolate the cause. PROGRESS. With this little bit of progress, I trepidatiously returned to working some weekends as a gymnastics judge in efforts to have something in my life that resembled me and my passions. Even though that required alarm clocks for the first time in 4 years and long days, I would always feel better during those weekends. Usually they involved traveling and hotel stays, which became our next clue.
- The new quest was to find what in my bedroom/home was the culprit (bedroom was especially suspect because I would wake up more ill than I was when I went to bed… Throbbing pain, itching/burning, “crawling skin,” burning sharp pain when I put weight on my feet, immobilizing and oppressive fatigue). After a few months of mattress, pillow, bed frame, carpet, tap water, insulation, dog, furniture testing/treating, still very little progress.
- Finally, this doc said “I need a sample of [my husband’s] DNA.” Sure enough, I was VERY allergic to him. This explains why I would start flaring up immediately after going to bed, wake up in terrible shape and feel better on the weekends when I was away. We had little contact through the day as I would get up long after he was gone and he would go out most evenings without me… frequently coming home after I was in bed. This wasn’t every day, but it was common. This also potentially explains why my health went from relatively functional to massive relapse in my first month or two of marriage.
- My allergy to him was not limited to a contact allergy, but also produced when coupled with certain emotions (fear, betrayal, disappointment… among others) or activity in certain lobes of my brain. Literally the chemicals produced with these emotions and neurological pathways used in these areas of my brain, when coupled with exposure to his DNA, produced a reaction. These rounds of testing were fascinating and very specific, as well as a bit telling of the dynamics in our home. We were able to get me to stop reacting purely to contact, but the reactions wouldn’t resolve with these pairings that were obviously more deeply and complexly rooted in my nervous system. SPOILER ALERT: there was a reason this was happening and wouldn’t resolve. Back at the office of my North Carolina specialists, in my April appt that year, I was strongly warned “DO NOT have a baby with this man. It will destroy you and every amount of progress you have made. I’ve seen this happen time and time again.” GULP. Kids were always theoretically in the plans.
- (June, 2013) I went to Paris with my mom for 10 days. Paris had always felt like where I belonged in life, and I had long had dreams of living there, but I gave up on them many years back believing it would be impossible. During those 10 days, I felt 100% healthy again. 100% me again. 100% hopeful again. As if, FINALLY, those thousands of doctors appointments and treatments had been able to make a difference. I also danced for the first time in years and felt in that moment more alive and more me than I had felt in at least 7 years.
- Once I got back home, my health started to deteriorate back to normal a little more and more each day. We were still treating me for this DNA allergy and finally I had the bravery to ask my doctor “Will I ever be healthy in this relationship?” It was a hard question to ask because I had to be ready to respond to the answer, and up until that point, I hadn’t been that brave or ready. (He said “no.“)
- So, I had the choice to be sick for the rest of my life by choosing to stay in a literally toxic relationship, or get out… Which was something I had known deep down I needed to do from probably month 1, but was never the plan. While my marriage was not the CAUSE of my illness, it was certainly the ROADBLOCK at that point in my quest for health and healing. Anguishing reflection followed … my heart and head knew the answer, but my lips were unable to articulate it for months.
- (August/September, 2013) We made the decision to end the marriage, with every intention to restore the friendship upon which it was built. I literally was feeling 50% healthier within days. When your body knows someone is “threatening” (be it to your physical or emotional well-being), it does what it can to warn you and protect you from this threat of danger. The “danger” was at least lessened with a newly-forged door at the end of the tunnel … and my body responded.
- (Summer, 2014) Five months after the divorce was finalized, I moved to Paris as a way to relaunch my life, continue healing, be in an environment that supported those goals and connected me with me. I had always known I belonged here—it was like Paris was my “soul-city” and every time I was here, I just felt like I was made for this place. Nonetheless, it was a HUGE risk because I was leaving behind my healthcare team I had depended on for so many years (among many other risks), had no idea if I would be able to make it with the new demands that would be placed on me, and I was risking a potential huge health crash. But nothing is gained without risk and I had my whole future on the line—and a reassuring gut feeling that this was my next step forward.
- Paris is amazing. But I’ll never say it’s easy (maybe once I’m truly fluent and can apply for citizenship in about three more years, it’ll at least be easier!). I have been on a student visa, and after 18+ months of intensive language learning and visa issues, I’m honestly tired. I think anyone would be tired, I am just more susceptible to the crash, the disrupted sleep-cycle and the mental overload. I’m not back to work, but I’m back to living. I have learned my new limits and am currently working on several adjustments that should bring me more balance and keep me healthy and within these limits. But, even on my most fatigued days, my life now doesn’t remotely resemble my old sick life. I do things I was not remotely able to do for over a decade. I proved to myself that I can again do hard things. I do things I love. I dance. I exercise. I laugh and love and socialize. I have literally climbed some mountains. I feel like I am playing the leading role in my own life. I’m in a place that makes me feel alive. Where once I had stopped dreaming and was only trying to survive, I am again dreaming of the future and actively taking steps to get there. I’m in a supportive and secure relationship. Everything has changed. Everything is being renewed.
I feel like I am playing the leading role in my own life.
Now 14 yrs past my car accident, I can surely tell you that there was no one cause (even though it started with the accident) and no one solution. I would have never recovered by treating one element and not searching for the others. Some things that I was able to do along the way would have NEVER been possible without the years of work/treatment that proceeded them (like working on the weekends, starting to dance or exercise again). I would have never recovered if we stopped after finding my 200th allergy. I would never have recovered without a multi-faceted approach. I would have never recovered while still in my marriage.
I’m not a doctor. I’ve learned a lot through the years, but my “expertise” starts and ends with MY experience in MY life. Some of the treatments I’ve done are so fascinating I can only start to wrap my mind around the theory, but fortunately I had some of the best doctors working with me and I trusted this team with my life. I’M NOT HERE TO TELL YOU HOW TO HEAL. I’m only here to tell my story and encourage anyone that is struggling with these chronic illnesses to look at the big picture and equally give weight and warrant to physical, emotional and circumstantial detriments to your health. Find some AMAZING doctors that look beyond a simple or standard cause and can see the big picture. Find people to whom you can report any random change in your body, and who are intuitive enough to know when it’s significant. My osteopath apparently knew for the majority of my marriage that it was inhibiting my healing, but she also knew I wasn’t ready or willing to end it, so she did her best to treat my body in those circumstances. When I was ready to move on, she was able to support me in that as well.
I’m only here to tell my story and encourage anyone that is struggling with these chronic illnesses to look at the big picture and equally give weight and warrant to physical, emotional and circumstantial detriments to your health.
The questions I sometimes wonder are if I could have avoided the metamorphosis from acute to chronic by taking a semester off of school immediately and focusing on the right amount of treatment and rest from the beginning? We will never know. I still think I would have relapsed with my marriage, but there is no way to be certain. Nonetheless, I have no regrets as going through what I went through for those 12 years taught me so much and brought me to where I am today… Which is EXACTLY where I want to be.
The other thing that gives everything that went through value is when I can share my experiences with others in a way that may help them find their light at the end of the tunnel. Don’t hesitate to connect with me if you have any questions or just need an understanding ear!