I want to share the whole story of my diagnosis here, not necessarily because I think everyone should (or will) read it. Feel free to skim. But I do hope that sharing the whole story will help shed some light for others out there who may be struggling with similar chronic illnesses. Sometimes it just helps to know you’re not alone and maybe this will help some of you find a diagnosis even sooner than I was able to.
We don’t know exactly what “causes” ME/CFS, but it is suspected to be related to a severe virus that kicks the disease into action (see the Open Medicine Foundations definition for more). One theory is that a virus actually manifests in the “vegus nerve.”
In tracing my own health history, the last time I really felt “healthy” was about 5 years ago. I suspect that my ME/CFS journey began less than a month before I got pregnant with my second baby in 2011. In November I got a really bad flu. The worst I remember having in a long time. Less than a month later I was pregnant and we made the decision to move to California the following summer. At about 3 months pregnant we moved out of our house and into my parents house while ours sold. Meanwhile I wrote, recorded and performed an album while we began raising support for my husband’s internship and ordination into the PCA and I tried to keep up with my 1.5 year old through morning sickness and the physical strain of pregnancy.
Five months after that, at 8 months pregnant (with barely a month to settle before the new baby arrived), we moved to California. And so we entered a brand new city with no family to help, new germs to submit to, the beautiful but physically demanding miracle of birth, postpartum, newborn sleepless nights and breastfeeding, all of which does a number on any woman’s body. Then one year into our Cali stint we moved again into a new apartment. Although our time in CA was wonderful, it had its hard moments in marriage, parenting two spirited kids, and dealing with some personal spiritual anxiety while struggling with what I believe I was undiagnosed postpartum depression. I experienced a lot of beautiful growth spiritually during that time too, as well as inspiration for my art. During that time I wrote and recorded my second album, Undone By Grace which really documented a lot of what I was wrestling with spiritually.
Then, after our second year in CA, we uprooted yet again and moved to Phoenix where my husband took a call as as lead pastor of a church plant. Adding to all of the above physical stress, emotional stress continued to compact when I had a death in the family within a few weeks of moving. Then several months following, I rushed home to NM to be with my mom who was hospitalized suddenly, and almost lost her life to a rare and severe vascular disease.
I’ve learned that the body stores stress in ways that we don’t often realize, and the brain maps out pathways and sort of “rewires” during trauma. The brain can get “stuck” in trauma mode (which is not good on the body). It was about that time, roughly two years ago, and not long into our first year in Phoenix, that my symptoms began, or perhaps finally could not be ignored. It’s possible that they were there from the beginning of that first flu in 2011 but I just powered through, functioning on fumes for two years, pushing myself to the limits, wearing down and not realizing that I was headed for a major crash.
It started with extreme fatigue. One day I was balancing the mom, wife, musician, and church planter’s wife roles without a glitch. Then suddenly I couldn’t make it to 9am without feeling like I had been drugged and my body couldn’t fight the “hit by a truck” exhaustion. I would submit myself to the couch and try to stay alert enough to keep an eye on my busy 3 and 5 year olds. Sleep was either altogether un-refreshing or I just wouldn’t sleep at all due to these strange adrenaline kicks where just as I’d nod off exhaustedly my body would “kick” me into a kind of limbo state of semi-aware dozing. These were often accompanied by racing heart and anxiety because I knew the next day would be rough without a good sleep under my belt.
Sleep deprivation aggravated the fatigue and then came mental confusion, forgetfulness, and brain fog. I had trouble concentrating and staying focused in conversation or even reading books. I developed anxiety around social situations where I would have to engage with other people, especially if I didn’t know them well (not good for a pastor’s wife!). I began having panic or anxiety attacks when simply going to the grocery store. I often felt dizzy and disoriented, listless and “out of body.” Sometimes my limbs would feel numb, tingly, or “slow” to function and fatigued in specific areas. I became really sensitive to light and sound and began wearing earplugs throughout the day because the “joyful noise” of my children was literally painful to me.
Then came the pain… I started feeling like I had the flu a lot. Think full body aches from head to toe, but with more acute and isolated pain in random areas from the upper spine/neck area to my cheek bones, wrists, or fingers. I would have chills like a fever, but my temp would remain normal. I would be writhing in bed in pain multiple times a week feeling alone and helpless, afraid in the unknown of it all, and guilty for the ways I felt like I was “failing” at life and parenting.
My Journey to Diagnosis:
Initially I went to 3 different docs, all of whom ran the basic blood tests. Everything came back normal. Mystified by the lack of explanation, doctors initially wrote me off as simply having anxiety and depression. A cocktail of medications was the blindly prescribed solution. My instincts told me that there was more to the story. I knew these were symptoms of something deeper going on. I found a more sympathetic MD (with integrative/naturopathic leanings) who was willing to spend more time helping me dig. I proceeded to spend nearly 9 months undergoing an array of tests to rule out everything form anemia, to auto-immune disease, to thyroid disorder, and other potential issues. I already ate very “cleanly,” but I tried dietary adjustments, went from rheumatology to endocrinology, added vitamins, and omitted certain foods. I experienced some initial improvement from some of those adjustments, but still lacked an answer. On paper, I looked normal. I felt so far from it, but was beginning to wonder if it was just all in my head. Still, I knew something was physically wrong and I did not give up looking for an answer.
At last, through a mutual connection, I got an appointment at the Mayo Clinic in Scottsdale with the founder of the Integrative Medicine program. He spent over 2 hours going over every test result I had accumulated over nearly 8 months, and doing his own intensive work-up. For now, this is a diagnosis by elimination. And although there are no “bio-markers” yet for this disease (and thus no definitive blood test for diagnosis), my Doctor, has spent a great deal of his professional career to the study of ME/CFS, and has done some of his own research, publishing papers and lecturing about ME/CFS with colleagues in the UK. He recognized and confirmed that I indeed had this disease. I was so relieved to have an answer! I wept for joy at having a NAME for it, and validation that I was NOT crazy or making it up. There was a real, chronic process going on and now I could move forward with learning to manage and treat it and Lord willing see some healing and restoration.
Throughout this process, my husband was, and continues to be, a rock, wholeheartedly by my side, picking up the slack with the kids and taking care of me when my pain and fatigue is severe. He has supported, listened, fought for me, prayed, and long-suffered, meanwhile working faithfully and providing for our family.
What ME/CFS looks like for me today:
We moved again this year. This time coming full circle back home to Santa Fe, NM, closer to family and into an incredibly supportive and wonderful community. (And by the way, the Phoenix and San Diego communities were equally supportive and wonderful along our journey. God has cared for us every step of this journey and we are deeply grateful.)
These days, when I’m “flared up,” I still experience many of the symptoms I had 2 years ago, but in learning to manage my disease, some of the symptoms have lessened greatly. I still deal primarily with trouble sleeping, fatigue and the myalgic (flu-like) pain. When I’m taking care of myself my flare-ups are less frequent and less debilitating.
What triggers my “flare-ups” varies, but it can be as simple as a restless night or it can come as a “crash” after a week (or even just a day) when I’ve put too much on the plate . I often experience what’s called “payback.” That is, a day or two, or even three following any exertion when I can barely function. When I exert myself in even the smallest of ways (physically or mentally), my body has, for some reason, been wired to misinterpret my efforts and overreact.
The best analogy I’ve heard is to think of an every day exertion or stressor (like doing the shopping or taking the kids to the museum) like a small birthday candle burning in our bodies. When blown out, it creates the tiniest little bit of smoke. In a healthy person, the body’s response would be minimal. It’s normal activity requiring a fairly minimal amount of physical effort or complex processing. The “smoke” should just dissipate with minimal effect on our bodies. However, in the body of an ME/CFS person, that tiny bit of smoke triggers the whole body to respond as though a raging fire were burning. Fight or flight hormones (called cortisol) begin dumping in an unnecessarily large amount. The smoke alarms go off and all systems are a go in response to what should be a very normal thing. Naturally, following an internal episode such as this, the body of an ME/CFS person responds as though they’ve been hit by a truck, run a marathon, or been sleep deprived for 48 hours straight.
In short, we crash and burn.
My New Normal and How I’m Managing my ME/CFS
I have NOT been great at self care. I have been moving and having babies and adjusting to new cities over and over again while perusing a career in music and serving in the church. I have not been good at slowing down, saying “no” to more things and “yes” to rest. I have allowed myself to be very self-critical, even self-condemning when I make mistakes. I have given in to worry, anxiety, and anger, storing up these toxic stress responses in my body until they have come boiling over. None of this helps the pre-existing condition of ME/CFS.
I know now that stress is a HUGE trigger for me, so I have focused a lot on minimizing mental and physical stressors. Anything that calms, grounds, soothes, warms, relaxes or slows me down is very helpful. I have to carve out ample time in my day for it.
So far, here are a few things that are helping me manage:
-Routine. Healthy rhythms create space for me to adequately rest and prepare for the events and the “doing.” Planning and pacing myself and limiting the number of busy events outside of the routine per week.
-Laying down or slowing down AS SOON as I feel achy or fatigued (aka NOT just powering through)
-Staying hydrated and nourished with healthy foods, mostly veggies, fruit and quality meats, (limiting sugar and processed foods).
-Prioritizing sleep. Setting a reasonable bed time, daily 30 min nap if possible, limiting TV and phone exposure right before bed or any other stimulants)
-Staying connected with my husband. Communicating, praying together, date nights, and connecting physically.
-Supplementing with vitamins, herbs, and foods that support adrenal glands and immune system.
-Mindfulness. When I have to lay down I often put on relaxing music or a guided relaxation recording. I pray, breathe deeply, and try to be present in the moment. I try to focus on gratitude and count the things I’m thankful for.
–Spiritual self care. Prayer, devotions, worship, etc.
-Massage, very gentle yoga or tai chi movements, chiropractic, and acupuncture are all some physically beneficial things as well. I try to incorporate at least one of these into my routine per week.
All that said, I am still learning how to manage this disease, but I am seeing much improvement, primarily in the way I’m learning to respond to it mentally and spiritually. On the days when I’m flared up, if I give in to doubt and fear I feel worse.
However, when I submit those hard days to God, relinquish control and and ask Him to be my portion, I find great peace and HOPE even in the midst of the pain.
As John Piper has said:
“Suffering clearly is designed by God not only as a way to wean Christians off of self and onto grace, but also as a way to spotlight that grace and make it shine. That is precisely what faith does; it magnifies Christ’s future grace. The deep things of life in God are discovered in suffering.”
“Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Cor 12: 9-10