Originally published: October 23, 2016
Last update: January 20, 2023
In 2013, I contracted a virus that I thought was the flu. It ended up being dengue fever, sometimes referred to as “breakbone fever.” The nickname is a reference to the level of pain some people experience when they are in dengue’s throes. It feels as of your bones are bowing under some imaginary weight inside your skin, something I don’t wish on anyone.*
I expected my symptoms to subside once the active infection went away. After all, friends who contracted dengue, sometimes multiple years in a row, seemed to return to a sense of normalcy. Instead, the joint pain remained, below the fever pitch of “breaking bones” but nowhere near my old self. For a long time I waited for that “old self” to materialize, and for the pain to recede. It took three years to finally surrender to my present and admit that the pain isn’t going anywhere.
* For those with lingering symptoms of dengue, my article of symptoms/treatment and long-lasting consequences may help shed some light on the reasons why.
Chronic pain, fatigue and my new normal
“Pain is a message to the mind that something is wrong,” Anna Altman wrote in a devastating piece about managing her own pain and migraines. “To this day I guard a hidden hope that I will receive a new diagnosis, one that clearly explains the severity of my symptoms.”
Like Anna, when I wrote this I did not have a definitive answer about what to call the aggregate of pain that has taken up residence. However, I did have an idea of how it got there.
I got dengue in Vietnam. I have celiac disease, and doctors have surmised that with an existing immune condition I was left with post-viral fatigue. Many people with COVID-19 end up with a similar post-viral issue, now referred to as Long-Covid or PAS-C. It goes far beyond fatigue, despite the name, involving the vascular system, neurological issues, dysautonomia, organs, and more.
For me, the post-viral ‘gifts’ include Raynaud’s syndrome, a disorder of the small blood vessels that reduces blood flow. When exposed to cold, my blood vessels go into spasms, which causes pain, numbness, aching and tingling.
Now, when I touch cold food or I am in cold weather, my hands and feet turn white, then blue. I tried making meatballs this summer, but had to stop because touching the ground meat was so painful that I stood in the kitchen in tears. (I’m now the worst Canadian ever.)
I also have a brain fog that makes me feel like I am wandering through quicksand in the world. Looking around, my day-to-day experiences went from a sharp and ‘awake’ feeling, something I’ve used to help me stay safe as a solo female traveler. These days, it almost feels like I’m in a slow-motion fishbowl, where I have to claw through the murk to think clearly. It’s more than simple tiredness of the brain; it’s a crippling lack of executive function. I can’t find words sometimes. I struggle to process simple maths that were never difficult problems to process. I am hypersensitive to noise and light.
The most debilitating thing after the joint pain and vascular issues and brain fog has been the fatigue. A deep, never-ending bone weariness that makes simple things seem like obstacles. And a restless sleep that does not provide respite from the haze of exhaustion.
And finally, I seem to have lost my fingerprints. I found this out when applying for a visa. After placing my hands on the digital fingerprint reader, all of my fingers had giant red Xs on them. “Oh!” said the man reading the scans, “You have no fingerprints!” Uh, what? Apparently fingerprint atrophy is not unheard of chronic fatigue patients, be it faded prints or an inability to read prints at all. Fingerprint atrophy can also occur with Raynaud’s syndrome.
I seem to have hit the fingerprintless jackpot. Jokes about my going out and robbing banks abound, don’t worry.
The combination of chronic pain, brain fog, vascular issues, and a deep fatigue combined to compress my resilience and made it difficult to see the forest through the trees. Emotionally, it felt like small disagreements loomed large. I found myself more reactive than before, taking things more personally.
Instead of facing my days with resolve, I started curling into myself, warding off intrusions that might make things hurt more. I started fearing the next shoe that could drop, and wondering if I would be able to cope.
Anxiety can be magnificently destructive, but when combined with chronic pain, it becomes paralyzing. Worrying about whether you can withstand more pain is a valid concern. But, as I eventually figured out, it only serves to make things worse.
In his book Full Catastrophe Living, Jon Kabat-Zinn notes:
“If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.”
My distress was compounded by the fact that I looked healthy, even though I was in pain all of the time. “You seem great!” friends would say, glimpsing a photo on Facebook. Some would tell me to take supplements, or to just ‘think positive’ about the pain and live my life as I used to. They meant well, of course. But the comments reveal a dismissiveness about longer-term pain that other friends with ‘invisible illnesses’ struggle with also. It’s as if people expected us to will it away.
If only we had thought about being more positive!
How silly of us.
The Spoon Theory explains the effects of invisible pain with very effective imagery. You only have a certain amount of ‘spoons’ in a day, and you use them to do things that most people don’t think twice about. Because for you, being in constant pain, even simple things require spoons. So everything you do, every decision you make about undertaking activities, it comes with the knowledge that there’s a spoon-like opportunity cost. And if you use up all your spoons that day, that’s it. You can’t do anything but rest, since you are so depleted.
The problem is that for most people pain is temporary. When it becomes a full-time roommate, the things that used to help — going to the gym to work through it, climbing a mountain and communing with nature, going to a concert — become threats instead of pleasurable experiences. Some days you have 5 spoons. Other days 10. But the fact that you are counting is part of your illness. For many, that kind of sustained bracing is beyond contemplation.
No matter the challenges in my life, be it someone who bet me I couldn’t get into law school or the other illnesses on my travels, I have always found a way around. This time felt different, because the pain was ongoing and frustratingly opaque.
The Portuguese have a word I love, saudade. NPR defines it as follows:
A melancholy nostalgia for something that perhaps has not even happened. It often carries an assurance that this thing you feel nostalgic for will never happen again.
This word, untranslatable in English, is what I have struggled against these last years. A wistful longing for something that may never return. After so long, seeking an answer to ‘fix’ the pain was not helping. I only turned toward healing once I forced that deep, destructive nostalgia out of my mind.
Turning things around little by little
In her long, thoughtful piece about her daughter Carmen’s MS journey, Maria Bustillos interviewed a doctor named George Jelinek. Dr. Jelinek referred to the difference between “healing” and “curing,” with the central message that it really matters to take a more active role in the care of our own bodies. Ultimately, if you fall through the cracks of the medical system, or if you fail to receive a diagnosis that has clear, actionable treatment, you have to take some control back for your own sense of self and health.
Maria’s reaction to his philosophy was one of comfort:
“Being encouraged to take care of herself made a world of difference to Carmen, and to us. We weren’t waiting around for the next bad thing to happen; we were working together in a diligent and increasingly hopeful state of mind.”
In the absence of finding a solution to stop feeling pain, I found hope in being able to reframe my attitude toward the pain. This included actively cultivating a sense of self-compassion, acceptance, and gratitude. These are all words that pre-travel Jodi would have taken a look at and rolled her eyes forever.
Simply accepting what is unmanageable and not trying to control what you cannot change is a marked shift from my old way of thinking. It is also directly in conflict with the way I was raised in Western society. “Give up and just accept that things suck? Are you kidding?” But it is the only way that I have been able to turn things around. By focusing on my progress (or lack thereof), I was making a difficult situation more untenable. Now, I celebrate the small steps I have started to take instead of fighting for bigger goals.
Rachel, a reader who contracted dengue and malaria at the same time, has struggled with issues of chronic pain and fatigue. Her journey mirrored mine, except that she was able to see a pain specialist in her home country. She and I have gone back and forth about our experiences, and our respective attempts to find joy in a life that is now different for each of us. For her, too, it has meant accepting the pain and not struggling against it. She has also actively sought out what brings her joy. “I had to try and look for joy and gratitude even when I didn’t feel it,” she wrote. “This became reflexive, and somewhat automatic.”
Like me, Rachel wasn’t brought up to seek out gratitude moment to moment. But she too found that focusing on it, even if things hurt, helped shape the outline of her healing.
When I talk about travel as a small woman, or as someone with celiac disease, I say that I can only live in the body I have been given. And yet I did not want to accept that very same fact when dealing with pain. But I have come around. For me, accepting what is unchangeable and not fighting what I am experiencing has meant changes to my business and lifestyle. This has included making Oaxaca a home base instead of being fully nomadic, turning down travel opportunities because my health takes priority, and focusing on business opportunities that did not require movement, like the food art store, and my celiac translation cards.
And—a necessity—looking for joy in smaller things, in the absence of the bigger ones I can no longer do.
So Why Am I Sharing My Journey with Chronic Pain?
This post was important to write for a few reasons.
First, because readers asked why I made a base in Oaxaca, Mexico. I saw many of my travel colleagues finding bases for a myriad of valid reasons. They’re tired, they’re wanting to focus on business, they’ve met someone great and want to be near them. For me, it came down to my health. It isn’t my spirit that was weary of travel, but my body. Reconciling those two needs was a struggle.
Second, because no doubt there are readers who have their own chronic pain issues, and they may benefit from hearing this story. We are all unique in our suffering, but sometimes it helps to feel less alone. It took me time to get past the twisted psychology of wondering if I simply needed to be stronger. No doubt others are feeling the burden of pain too.
And third, because it’s all part of the journey. I’ve long maintained that this website exists to share the good and the bad, and reframing my relationship to pain and my own life choices is part and parcel of what I’m living.
How I learned to cope with chronic pain
It wouldn’t be a Legal Nomads post without some resources, right?
The most important, most difficult, most fundamentally frustrating thing is this: you simply need to accept that this is your reality, and move forward from there. Even when moving forward feels like crawling on the floor, a millimeter at a time. Even when progress feels elusive, and you can’t bend your hands in the morning. The only thing you can do is care for yourself and try to find solutions that work for the body you’ve been given.
I do want to add that I have experimented with a lot of different diet-based changes, supplements, and therapies. I have been tested for inflammation markers in the blood (thankfully they’re low), and thyroid disorders, and many other things. While I appreciate those telling me that I should try x and y thing that will magically fix it, with all due respect, I have tried many of those things.
1. Daily meditation
I meditate both morning and night, and while there are times where I feel resistant to the practice, I cannot deny that it makes a big difference. Meditation has helped accepting what my body is feeling moment to moment, and also reduced reactivity in other areas of my life. I use Insight Timer app (free) on my phone, where I can select by topic there.
2. Helpful books about pain and chronic illness
I read some very helpful books for stress, the brain, and pain management. The following are a few of the dozens and dozens that I have read in the realm of pain management, stress, self-help, and more. They are books that I will return to, because they tackle the precise tool that has helped turn things around: my attitude toward the pain. I highly recommend them all.
- Full Catastrophe Living, by Jon Kabat-Zinn. As the creator of mindfulness-based stress reduction programmes, Zinn focuses on mind-body strategies derived from meditation and yoga to counteract stress, establish greater balance of body and mind, and help you get out of the rut of fearing pain.
- Self-Compassion, by Kristin Neff. Self-esteem work isn’t the fix to perfectionism, argues Neff. Accepting the present, being kind and compassionate to ourselves and still striving to do better is. The book offers exercises and questions in each chapter to help.
- When Things Fall Apart, by Pema Chodron. I picked this book up a few years ago, but wasn’t really ready to read it. Or rather, I was not yet willing to accept the pain and change my perspective about it. I was still looking for a fix. Chodron writes that when we are continually overcome by fear, anxiety, and pain, the way out is to stop bracing against it and learning to stay open. Not easy, and you have to be willing to read her words without judgement, but I’ve found them very helpful.
- The Brain’s Way of Healing, by Norman Doidge. This is more about neuroplasticity than coping with pain, but the entire first chapter delves into just how incredibly adaptable the brain is, and how we can harness its plasticity to help downregulate our pain loops, be they neurogenic or nociceptive. One of the more important books I’ve read for my own journey.
2023 Edit — Additional, very helpful books that have accompanied me on this long journey are as follows:
- The Lady’s Handbook for Her Mysterious Illness: A Memoir, by Sarah Ramey
- The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O’Rourke
- What Doesn’t Kill You: A Life with Chronic Illness – Lessons from a Body in Revolt, by Tessa Miller
- How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernard
3. Cultivating patience
I started to understand that resilience is a process, but that targeting resilience was also counterintuitive to my healing. Like many overachievers, I trafficked in perfectionism for most of my life. I’ve had to let that go.
Warding off imperfection doesn’t make us stronger, even if it feels like it might protect us. As with opening your heart to others, cultivating openness makes you resilient by process, but striving FOR that resilience ekes into toxic positivity.
For chronic pain, baby steps feel like giant leaps. Progress doesn’t happen overnight. And that’s ok.
4. Accepting what is
One of my best friends often mentions “magical thinking,” that wishful place when you “what if” something to oblivion. Magical thinking isn’t reality, it’s simply a story you are telling yourself.
Instead of my fantasy that I’d wake up healthy one day, I’ve worked on accepting what is. I’m a person with significant pain problems, and I’m availing myself of tools to cope better. It is what it is. All you can do is work with the reality you are living, and for me that meant accepting that these limits are valid and I need to respect them.
5. Practicing gratitude
A friend argued that this blog is a practice of gratitude, since it shares the many wonderful things I’ve encountered and appreciated during my travels. While that’s true, it also hasn’t been enough to help me in this journey with pain.
What has helped is very simple: writing down 3 things at the end of each day that I am grateful for, within my reality. There is science behind this practice, despite my initial skepticism. Nowadays I’m all for reminding myself of the good in my life, which is plentiful despite the pain.
6. Moving as much as I can
Walking when the pain is slightly better, doing restorative yoga classes (highly recommended and far more gentle than a different type of yoga class), stretching and taking stairs when they are around. Every little bit of movements counts. I’m used to it hurting when I move but I still try to move when I can.
2023 edit: with a spinal CSF leak, this is quite difficult. I still do try to walk when my body allows. And it still helps.
7. Trying to find joy in this new space
As I mentioned above, the things that brought me joy were the ones that now hurt. I had to get creative with the things that were available. I started to make lists, with a hat tip to the app IFTTT – if this, then that. I made two-column sheets: if this isn’t available then I’ll do that instead. If I can’t climb a mountain, I can go for a long walk in the park. If I can’t eat chilies, I can cook a fun meal at home. And so on.
8. Creating morning and evening routines
These are very simple routines — not the “how I hacked my mornings and became The Most Productive Entrepreneur Ever” lists. I have found that even if it is a really painful day and I feel like it was a wash, I still feel like I accomplished something if I stick to them.
- 10 minute stretches (I use the Sworkit Stretching App, free on iTunes and Android)
- 15 minute meditation (I have a free 10-week beginners’ course to meditation, for those getting started!)
- Drink my coffee because coffee.
- Write 3 pages by hand about what my brain is ruminating about. If my hands or joints hurt too much, I draw flow charts instead.
Evening, just before bed:
- 10 minutes of tai chi (I use YouTube videos for this)
- 30 minutes of meditation
9. Making diet and supplement changes
Some of what has worked for me:
- This may be common sense to the rest of humanity, but I’ve spent most of my life in a state of normalized dehydration. It’s amazing how much better I feel when I drink water. It’s as though everyone else telling me I was crazy for not drinking more of it was right.
- Cutting out caffeine except for that one (glorious) cup of coffee per day.
- Cutting out alcohol, with rare exceptions.
- Cutting down on sugar as much as possible. It’s in a lot of foods, and I do put a spoon in my coffee, but I have eliminated desserts and snacks that have sugar.
- Taking a robust probiotic daily (I take a product called Mood Probiotic that is d-lactate free because it’s shelf-stable and includes the strains I want to supplement with.)
- I am already celiac, so I don’t eat gluten but I have found when I do nowadays by mistake it’s far worse than it was pre-dengue. So I’m extra careful about cross-contamination. When my joints are particularly bad, I also cut out corn and nightshades.
- 2023 edit: I have subsequently learned that a huge part of my pain was something called mast cell activation disorder, and changing my diet and taking appropriate medication has lowered my pain levels considerably. I was diagnosed with this condition in 2020.
10. Connecting with others
Chronic pain has a tendency to make you feel alone and misunderstood. While it’s true that some people may not grasp the extent of it, no doubt if they are true friends they will love you all the same. Connecting to friends who accept me despite the current limitations has been really important in helping me out of my foggy isolation.
I also appreciate friends and the three readers named Rachel who have been willing to share their experiences with chronic pain and immune disorders. As humans, we are wired for connecting to others and it’s times like these that we need to remind ourselves to do so.
Tim Urban wrote a short post about the 100 10-minute blocks we get each day. It’s up to us to decide how to use them. It has taken a lot of reframing for me to recalibrate into this new normal, and I am not fully there yet. There are many days, bad days when it hurts to move, when I think what if this never ends. But then I actively try to focus on what I can do: fill those ‘blocks’ with laughter and soup and learning. Go outside and take the time to smell a flower or stare up at a beautiful building. Write whatever comes to mind, without judging.
The pain is here, and it may be here to stay. All I can do is carve out my own joy within it, and accept that it is now a part of who I am.
2023 updates: a CSF leak and Mast Cell Activation Syndrome
As I mentioned above, years after I wrote this post I learned that I have mast cell activation syndrome, an inflammatory immune condition that has required many further changes to diet and lifestyle.
This condition is common with post-viral patients who were unaware that they were genetically predisposed to developing it. I got it after dengue fever, but we are seeing it crop up frequently with Long Covid patients. I thought my years of insomnia were due to anxiety or stress, but nope: they had a physiological basis. Mast cells are more active at night, and I sleep better now than I have in years thanks to stabilizing them.
There are many contradictory resources about mast cells online, especially the ‘low histamine diet lists’. I decided to put my notes all in one place, and put together a long resource page about the condition here. It includes a section on Long Covid.
I also learned that I have Ehlers Danlos Syndrome, which explains a wide variety of disparate symptoms during the course of my life, ones I would have never connected together. You can read more about my EDS diagnosis here (scroll down past the yearly update section).
Since I published this piece in 2016, I had an even more intimate journey with pain.
A diagnostic spinal tap in 2017 led to a cerebrospinal fluid (CSF) leak, which has yet to be fixed. I’ve had four procedures to try and repair the chronic spinal CSF leak, but thus far none has lasted longer than 8 months. During the last one, I went into severe anaphylaxis on the table and that raised the floor on my mast cell disorder as well.
For more about my leak journey, see a piece I wrote for CNN here, about how I found beauty in the small again after everything I loved in life (travel, food, mobility) was taken away.