Chronic illness dismantles our life force, but what does it look like to reassemble it?
As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can’t be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). My life has blossomed in many positive directions beyond my physical health.
Since surgery, I have gone from having around 10-20% function on most days to seeing 40-50% function on several days, but I still crash pretty hard. Those with ME/CFS understand the significance of this improvement. It is the difference between having a small, sequestered life to being able to leave my house a few times a week, pick up my kid from school, run an errand or even two, make nice meals for my family, and do physical therapy (PT). It is the difference between having no life force and having some energy to rediscover who I am.
Before surgery, I had all but given up on pacing and was in a perpetual state of post-exertional malaise (PEM) from chronically overdoing physical activity and other stressors. My function suffered and decreased over time after gutting it out and pushing through illness. The noise-to-signal ratio was too high for me to discern symptom patterns. My surgery offered a chance to clean the slate and build from the ground up.
Rather than being crashed all of the time and having the odd better day, my surgery seems to have flipped this narrative. It’s as if my body has a new set point; when I crash, I return to a new, more functional (but still delicate) equilibrium.
Getting the most out of physical healing demands introspection. My recovery has allowed me to disentangle the effects of stress and activity intolerance on my wellbeing. This opening has forced me to face a few truths about my illness (and self) I have known all along.
In my last update, I described a process I called “neurological overwhelm.” After my surgery, I noticed that in one moment, I would be fine, only to unravel and lose my ability to cope in the next. It felt like a light switch. Once triggered, the more I tried using my brain, the less I could process information and needed to isolate myself in a quiet, dark room until it passed. This usually happened when trying to figure something out, combined with too many neurological inputs, such as lights, sounds, and scents…and having too much on my plate. This extreme response helped me see I contend with a milder but still impactful version of stress from neurological processing every day.
I am learning that people have different ideas about stress, and I probably talk about it too casually. Many seem to equate it with anxiety and imply there is a choice about whether and how we experience it. It sort of reminds me when you tell people you have crippling metabolic fatigue, and they reply with, “Well, I get really tired sometimes, too.” When trying to describe how disabling neurological stress is, I get, “Yeah, I get really stressed, as well.” Not to minimize the suffering of others or their desire to empathize with me, but neurological overwhelm is something different, stemming from who knows what, but likely a combination of HPA-axis dysfunction, dysautonomia, mast cell activation, and brain inflammation.
The extreme on/off neuro switch in the weeks after surgery seems to be in the rearview mirror, but in its wake, I have realized what I have always known: stress is enemy number one in my illness. It doesn’t take much for my stress bucket to overflow and shut me down. This part still feels very broken, even though I see many physical gains from my surgery.
I used to thrive on the thrill of multitasking, high-stakes pressure, and creative problem solving, skills that allowed me to succeed as a graduate student, conservation biologist, and professor. I loved the rush of having many spinning plates in the air, but I sacrificed my wellbeing and health to maintain them.
Old habits die hard, and I have struggled to feel the weight of my life come crashing back after surgery. I tried stepping in where I left off too quickly and realized this approach would undermine my recovery. I rarely give myself time to heal after momentous procedures. I recall how I once chose to present my post-doctoral research to my new boss and work colleagues at The Nature Conservancy the day after having embryos implanted in a second IVF attempt. Or when I finally did get pregnant, and my OB/GYN warned I would end up in the hospital with pre-term labor if I didn’t slow down (you can guess how that turned out – pre-term labor at 30 weeks). As another example, I remember how Dr. Jose Montoya told me to rest and not rush back into my life after starting antiviral drugs (I did the opposite and crashed). I try not to live with regrets, but these decisions made me question whether I have a pathological addiction to stress. My surgeon said he could get me 50% of the way there, but the rest would be up to me. Would I be up for the task this time?
As I recall these memories, I ask myself what my choice is now. Why bother flying across the country and having an intense neurosurgery only to undermine it back home with my old bad habits? Why, indeed.
While writing my last update, I realized I needed to withdraw substantially from the world to find my post-surgical footing. I envisioned wide-open days with no demands on me. Being embedded in a busy family makes this goal impossible on most days. Having anything on my schedule is a significant stressor. Even one item on my calendar can throw me off, regardless of what it is.
Lately, I have had too much on my plate (appointments and more appointments for my son and me), making it hard to cope. I struggle to find life’s volume nob. When stressed, my routines fly out the window – eating well, meditating, doing physical therapy, and seeing where my joy takes me, such as listening to music, writing, exploring a new place, or rediscovering my love of cooking.
My big breakthrough observation is that I can handle more physical therapy without crashing when I manage my life with good boundaries and habits. This “interactive” effect of stress x physical activity is an astounding finding to me. Who wouldn’t want more function, even if it means letting go of a lot? With a cost-benefit tradeoff this clear, I have been inspired to minimize neurological stress and find more day-to-day stability. But it is a constant struggle.
When changing habits, there is always low-hanging fruit, but enduring changes take more work. My first move was to address my dismay over the state of the world – that was an easy one. I spend far less time on social media now, which also helps. Instead of pouring over the various newspapers I read and listening to the talking heads, I turn to (non-political) podcasts, music, and baking shows.
I am also learning how to set better boundaries to not sacrifice my health. Unfortunately, I have had to say no to people in need, which pains me. Imposing a routine on an otherwise aimless existence also helps: fasting till noon (helps with IBS), eating whole foods instead of protein bars, meditating, reading books, and having a set bedtime. Having a more regulated life allows me to tolerate more activity. But entropy constantly pushes back against me, threatening to unravel my efforts. It doesn’t take much to throw me off.
Another strategy is to change my relationship with “stress.” I remind myself that life is just a series of moments. I usually have the tools I need to handle anything at any given instance if I am present with it, even with pain and discomfort. The more significant threat to my health comes from trying to reside in the future and the anticipatory anxiety that it evokes, adding to the neurological overwhelm. When my calendar fills up, I try to use each appointment as an object of meditation. Still, what I need more than anything right now are vast, open, unscheduled spaces to see where my joy takes me.
Physical therapy is my top priority right now. I love that I am getting stronger, but I also see a long road ahead. You can’t remedy a decade of deconditioning overnight, especially with ME/CFS. I am fortunate to work with an excellent local physical therapist who understands the therapeutic needs of people with hEDS who have undergone neurosurgery. Recently, I met another client of his who had SFT with Dr. Petra Klinge, another highly-specialized neurosurgeon on the East Coast! My exercises are designed to rebuild strength, (appropriate) flexibility, and mobility. The details of my PT program would require another post – perhaps I will do that at some point. I approach PT with a “beginner’s mind,” seeing what my body can do each day.
It’s been a challenge finding the sweet spot of physical activity. When my stress is controlled, I feel pretty good and easily overestimate my abilities. It is hard to pull back when feeling better! A couple of weeks ago, I felt so good and decided to extend my walk. I marveled at my ability to be upright and let my legs take me to new streets in my neighborhood I had never seen. On one day, I walked further than I have in years, ran through all of my PT exercises, and explored a tiny village at the foot of the Sierra that I have wanted to visit since I moved to Nevada four years ago. I did all of this without my mobility aids.
Needless to say, the next day, I crashed hard and was unable to do any PT, except for some stretches, for a week. Even with these more significant crashes, I marvel at how much I am NOT crashing. My PT and I are trying to find a stable equilibrium before adding new exercises. It has been slow, but I am making progress.
My crashes feel different, and I can dissect them better now. Since surgery, my crashes seem to exacerbate what I have come to call my CCI symptoms – headaches, suboccipital pain, orthostatic intolerance, and more. I had my first crash like this at around the 3-4 week mark after surgery. Sometimes, but not often, I still experience a rise in sympathetic drive and muscle weakness, consistent with PEM. However, I don’t have the same feeling in my body that PEM elicits.
When I get back to baseline, I can do so much! Lately, I have dared to leave my walker in the car. Before Thanksgiving, I went shopping – on foot – at Trader Joe’s – a place I could not tolerate before surgery, even in an electric cart. I can sit through two hours of an online Welsh course each week, sitting upright and looking somewhat normal. I have been cooking meals for my family and trying new recipes. I do some form of physical therapy every day, even it is only some light hamstring stretching.
Even with my physical improvements and good stress management, I still fall off the cliff. Low blood pressure seems to wax and wane on its own, which I can control with IV saline to some extent. Significant drops in BP can affect me for days, even after it improves – but it does not feel like PEM. Oddly, my orthostatic intolerance – my ability to be upright – has improved since surgery, despite my blood pressure still being low. Dysautonomia underlies some of the most disabling symptoms I still have.
I have some surgery-related pain. My lumbar spine can get very sore and extend down into my sacrum. Advil, cyclobenzaprine, and heat help. My PT stretches and walking are essential for keeping this type of pain at bay.
There are still some activities I cannot tolerate, namely, car trips longer than 30 minutes. I get pain in my lower back, and being in the car seems to exacerbate my head and neck symptoms. I can’t walk far without crashing (~ 10 minutes), but I hope to see some improvements in both of these areas in the coming months.
How we choose to spend our energy also matters. I happen to be the type of person willing to undermine my own health while exploring a passion and helping others. How do I explain to people that, yes, my physical ability improves significantly sometimes, but this is entirely contingent on how well I am managing other parts of my life? We’ll see where I am in a few months! For now, I am focusing on my recovery and well-being. I am fostering quiet spaces vs. careening around the mountainside with white knuckles as the wheels come flying off the bus. I hope to rebuild more enduring health from this more peaceful and stable place.
Beware of sleeping beasts
The big question that most people face with SFT surgery is whether it will unleash instability at the cranial cervical (CCI) junction and require cranial cervical fusion (CCF) surgery. The symptoms I associate with CCI returned in the third-week post-surgery but are not as bad compared to back then and seem to track with overdoing it. I work to protect my neck by keeping it in a neutral position, not doing puzzles (a beloved pastime I have had to all but give up), and getting into a fetal position when symptoms ramp up. The next six months will tell me if I need to head back to New York for another surgery.
In the meantime, I will continue to build on my physical gains in PT and get more ground under my feet.
|Symptom||Just after surgery||3 weeks||6 weeks||3 months|
|Leg muscle fasciculations||100%||100%||100%||95%|
|Restless legs (body)||100%||100%||100%||95%|
|Shimmering waves down legs||100%||100%||100%||100%|
|Electrical sensations in legs||100%||100%||100%||90%|
|Cognitive dysfunction||Hard to say with the drugs||30%||40%||40%**|
|OI (ability to be upright)||90%||70%||60%||60%|
|Bowel function||(hideously worse from opioids)||20%||20%||20%|
|Mast cell reactivity||Horrible (!) from surgery drugs||Still bad||Better||Baseline|
|Coat hanger pain||100%||100%||50%||40%|
|Need to be in a fetal position (CCI)||100%||70%||70%||60%|
|Neuropathy in feet and calves||100%||30%||20%||0%|
|Low heart rate||100%||100%||100%||80%***|
|Low blood pressure||100% (hypertensive!)||80%||20%||0%|
|Appetite||0% (yucky hospital food)||30%||50%||50%|
* Post-exertional malaise: I am no longer in rolling PEM and spend a vast amount of time with no PEM. However, if I far overshoot my abilities, I crash. Being out of rolling PEM has allowed me to better understand the anatomy of my PEM. The encouraging part is that I can do more now without triggering PEM if I manage my energy carefully, which is difficult when feeling better. I am watching this space closely.
** Cognitive dysfunction from PEM has improved vastly, but I traded it for a different type of cognitive function – the type you get after neurosurgery. It is more like neurological fatigue vs. the thick, fuzzy, and slow brain of my PEM/inflammation.
*** My resting heart rate is about 12 beats higher on average – from around 48 to 60. All of this raises the question about pacing benchmarks. My old 2-day CPET is probably not valid anymore.
PS – I sat on this piece for several weeks because I crashed really hard after Thanksgiving! So, perhaps I still have a little way to go 🙂 I have no idea where this is going, but I promise to share it here. Thanks for reading my blog!