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.
161 thoughts on “Learning to Cope With Chronic Pain”
Hello Jodi, you’re on the best journey you can be, you never stop learning and providing your readers with such well-rounded posts.
Good luck with accepting the ‘new reality’, hopefully soon the pain won’t be on your mind as often and you’ll get to directing your thoughts naturally towards other, more pleasant, things. I’ve had rheumatism since 5 y.o. which in a way is quite lucky as pain’s been quite normal and I’ve had no problem living with it. The ‘worst’ was accepting high heels are really not good for the knees and that I shouldn’t even try bungee jumping because my neck might not handle it. Giving up on both was pretty easy :)
Sending you a lot of good vibes!
Thank you Veronika! What a wonderful attitude. Sending good vibes back at you.
I, too,have had years of pain and physical breakdown, depression after DHF in 2010 in Indonesia . After reading your article about your journey, I am wondering if I also had chikukungnya at the same time because no description of dengue has included all the intense pain symptoms that I experienced, something new almost each day. My husband and I call it the Baskin Robbins disease: 31 flavors of misery.
The biggest fall out for me after a year of clinical depression was intense soft tissue inflammation and pain and scar tissue throughout my body, often locking me up and keeping me immobile. A massage therapist said that I am like bubble wrap. Musculoskeletal specialists and rheumatologist tried most everything, to no avail. I finally tried changing my diet on the recommendation of a naturopath, adding probiotic, etc to rebuild some of my immune system and began walking in a super warm pool. Little by little, I have regained some strength, and can now ride a bike. Walking still remains painful. Scar tissue and inflammation is always a battle.
My brother is an infectious diseases specialist and he has totally accepted this approach to my managing pain, and agrees that sometimes these diseases turn us upside down like this. So, we do what we can, and we are grateful for what we can do. Thanks for an article that validates my experience.
Hi Susan, thank you for taking the time to comment. I’m glad to hear your brother has accepted your more functional approach and that lifestyle changes have worked for you. Since I wrote this post in 2016, I have made further changes to diet and more and also unfortunately am disabled due to a spinal CSF leak. I’m grateful that my approach here was in place before the CSF leak began, as it helped considerably to have this framework already.
I don’t know if you’ve seen some of the studies comparing COVID’s effects on the body to that of DHF and other serotypes, but if not there is a group of doctors who believe that mast cell activation can result from both. In my case, dengue did set off my mast cell cascade (which includes a lot more than inflammation), but I did not know it nor had I heard of mast cells until my csf leak. The procedures for the leak further exacerbated my mast cell dysfunction. If at all helpful, I’ve put my notes together here: legalnomads.com/mast-cells
All the best to you <3
Read this whole article. I was unaware of a lot of the effects that you discussed. I’ve heard of dengue, but never really knew what it was. Wishing you luck in your journey and thinking about you now.
Thank you Leah. It’s not that dengue causes this kind of reactions; many people heal with no issues. It’s just simply the cocktail of what went wrong in my own immune system. Thanks for the kind words. <3
Hi Jodi, this is a great post. I had an accident early this year and have been in chronic pain ever since. It has been an education for me… as a nurse with 26 years experience I knew “textbook” what chronic pain does to a patient emotionally, but to experience it personally has been an eye opener. Thank you for posting what works for you and being so honest about the “drain” of chronic pain.
Thank you Alana. I’m sorry you’ve been in pain also, and it must have been quite a mind-mess to be on the other side of it after being a nurse for so long. I’m grateful for your comment.
I never thought Dengue can be this serious. Although I know that it can be fatal if not detected early on. I know some people who even had to undergo blood transfusion. 3 years ago I was also diagnosed with Dengue. I don’t know if this makes sense but after being admitted for 5 days in the hospital I was released and I felt better. On my third day, I was advised by nurses (knowing that there is no specific medication for Dengue other than having enough supply of water to prevent dehydration and constant monitoring of platelet count) I was advised to boil “Tawa-tawa” leaves (from Philippines. I’m Filipina.) I believed it helped me a lot. I don’t know the composition of this miracle leaf. For all I know it could be some sort of placebo effect. A cousin of mine who got Dengue before I caught it also took the same advice and he also got better in a few days. But I guess the medicinal plant is only used to increase platelet production and relieve fever. I don’t know if it can actually help patients relieve pain.
Anyway, I just want to say thank you for sharing your stories. Your commitment, determination, courage and positive reinforcements inspire a lot of people. You found a great purpose for your pain. You are touching so many lives everyday. I hope & pray that someday you will find relief and recover the “normal” you used to have.
As for now, keep writing and carry on.
Hi Jen, to be clear it’s not the dengue that’s this serious for everyone. As I said in the piece, many friends recovered without a problem. It’s that I’ve got other immune system issues that didn’t play nice with the dengue antibodies.
Thanks for the kind words, and for leaving a comment.
Excellent. Thank you.
I’m sorry to hear about your condition, but I would like to say that you shouldn’t give up hope, yet. You do meditation, yoga, and have altered your diet, all which appear to help you in one way or another. But have you ever tried fasting? This suggestion lies firmly outside the realm of Western medicine but is something that I would strongly suggest you take the time to investigate. Any pain that is related to inflammation can benefit from fasting. Furthermore, it’s completely free. I recommend fasting as it helped my health in completely unexpected ways, and with this new realization of the bodies ability to heal itself, I have taken it upon myself to spread the word. If you are dealing with auto-immune type issues, fasting could help as it gives your body the much-needed chance to heal your digestive tract, which is where a lot of these issues arise from. Everyone’s body is different so there is no guarantee that fasting will help your situation, but given that you don’t have any other solutions, I think it would be well worth your time investigating its potential to cure all kinds of “incurable” illnesses.
Good luck with your journey in life. Hope things get easier for you in the future, but in the end, all we can ever do is make the best of our circumstances and appreciate what we do have.
I pass out when I fast but yes, I have heard that it works for some.
I hope you can find a QiGong group to practice with. Mindful movement is a tremendous healing (not necessarily curing) force.
May all beings find the roots of suffering.
I’ve been doing Tai Chi but the restorative yoga has helped the most. Thank you.
I read your post and it resonated with me for a number of reasons. You remind me of my daughter in many ways and on this level I just wanted to send you healing energy and strength for dealing with what is in front of you now.
Like many of the people who have replied to this post, I have had my own struggles to do with a spinal injury that can produce a constellation of symptoms that when they flare are pretty unbearable and for which I can get no support within the conventional health care system. I’ve (knock on wood) been in a state of remission for almost two years which I attribute to creating a regime similar to the 10 things you have described. I think for lots of reasons and not just when we are sick or suffering this is a good recipe to follow.
What having to deal with this issue made me acutely aware of is how fragile our sense of the world an who we are in this world is. When something like this happens, we can lose our compass for navigating our own body and life and that is, for most people, frightening. Having connection to people who love and care for you is so important when it comes to dealing with this. I think before this happened to me I just took for granted that I would always be able to do more or less with my body what I had been able to up until that time and then it hit me that this was not something I could take for granted and could be taken away in a second. This realization has really helped me be present and grateful to everything I have from moment to moment and also to cherish and nourish and protect the capabilities I do have.
The last thing I wanted to share with you is that the conviction that I could, with patience heal, sustained me. It was a fine line for me between surrendering to what was while maintaining my fight to heal and I did work very hard to heal. Like with so many things, it is a matter of walking the razor’s edge. Stay strong and be well!
Many who suffer with Lyme also have had serious exposure to mold, to which they are serious. They address the mold and find that the Lyme symptoms diminish. Perhaps that is true of dengue also.
Hello Jodi: Just read your article in the Guardian and loved it. My daughter struggles with chronic and thus far incurable conditions as well. One thing that has helped me much is making the distinction between struggling and suffering. We struggle, but we refuse to suffer, and there is a huge difference psychologically and spiritually between the two. When I recognize and remember that distinction life goes a whole lot better. Thanks for the article, and good wishes. -Chris
Thank you Chris!
Thankyou for sharing your story. Life with long-term chronic pain is no fun. Your story shows us it is better to have a positive attitude and that is our choice rather than letting chronic pain deal with us. I like to think I have a chronic pain problem that once had me. Have you any opinion on the use of Medical Cannabis in any form for chronic pain? I believe it is being proven that it is a very useful herb whose properties have been suppressed by big pharma et al for the last 80 years or so…
I don’t have an opinion as I haven’t tried it – in the countries I’ve been living it’s not a legal option. Others have definitely found success with it, however. I can’t speak to it myself.
Thank you for sharing your perspective. Even if I do Not suffering like you, your article helps me to understand the people who suffers. I believe that understanding can be a little help as unfortunetely we do Not have the power for more.
Thank you very much.
I really am encouraged by your detailed way of putting your issues into words. I have Epstien Bar virus with Fibro, multiple food allergies, structural issues from several falls. While these seem totally different, we both have an auto-immune disease coumpounded with a virus and other isues. I break down my day into segments and I know that if I want to go out in the evening, I have to sort of pre-pay ahead of time with several rest periods and choose low-key activities. Mornings are my best and I try to do any task or errand that requires much math or critical thinking, early in the day. I’ve seen a sleep specialist to help me organize my sleep and naps in a way that helps. I’ve suffered bone-loss from inactivity when the virus was most active so I’m trying to keep moving. I got a dog to walk. He’s been a great motivator though it took a while for me to get around the block. He’s a lazy dog though so if I’m having a down day he doesn’t mind. I sent your link to my family to help them better understand my issues. But the barbed wire picture really says volumes. Thank you for helping those of us put into words what can’t be seen or easily understood.
I’ve been dealing with chronic pain for about a year now, and I have absolutely benefited from reading your story – thank you so much for sharing it. There is much in this post that resonates with me and a few things that I haven’t thought about before. While I’ve been trying to cope with my new life with pain, I haven’t really tacked the attitude side of it. Thank you for sharing about how being more grateful and changing your attitude towards the pain has helped you. I’m going to try writing down three things I’m grateful for each day and also look at some of the other resources you provided. To start with, I’m grateful that this post has become popular and shared in many different places, because it’s exactly what many of us “spoonies” needed to hear.
Hi Jodi – thank you so much for your article and the fact you have never got rid of the body pain that comes with dengue. I also had dengue fever, typhoid and hepatitis A all in a three month period in 2008. Since then I have never recovered and have been left with severe chronic pain. Medical professionals shake their heads and suggest I just get “on with it” I am healthy. It has been like living in a nightmare – the daily struggle of performing normal tasks, the disbelief of family and friends and many other frustrations. The most difficult thing I have is has been just how far my world has shrunk. Your article is very timely for me as I am attending The Chronic Pain Unit at Geelong Hospital in Australia and their approach is very holistic and many of the suggestions you have they are already promoting. But personally the most profound thing you wrote is that you have chronic pain post dengue – I have never been believed this was the cause.
Hi Patricia, from what I’ve read and been told the cause isn’t the dengue per se, but actually my immune system and how a virus like dengue interacted with it. It might have been a similar result with a different mosquito virus, or something like mono, hard to know :( I’m sorry to hear that you are in pain – what a terrible 3-disease punch all at once! I hope you heal as best as you can, whatever that means for you.
Jodi, thank you for sharing this and I’m so sorry to hear this happened to you – though proud of you for your approach and how you’re dealing with it. It’s also a fact of us getting older – and you’d not be the first full time nomad to quite the nomadic lifestyle.
I have chronic IBS, rheumatoid arthritis and asthma as well as food allergies, so I know what you mean about looking fine on the outside and people not understanding the pain you have inside. I went through it for so many years, and the emotional experience is so close to the surface that if someone suggests I go through any part again (like return to a certain medical office!), I panic and start crying.
I have been almost entirely cured for about 5 years now using Enbrel (the brand name, I think it might be Embrel in the states). It’s an expensive injection every week and it means I’m immunosuppressed so I get everything that goes around (and I try to avoid flying – crap for a travel blogger), but I can walk and do sports and have no pain. I don’t know if that’s an option for your disease, and it doesn’t work for everyone (plus it depends on your insurance situation), but I know it worked quite miraculously for me. Mental strength and non-drug solutions can go on for a while, but for me 10 years of that was enough…
All the best
Thank you Alexandra! I am glad you have found something that works for you.
You have entered a world that I entered 8 years ago. My active life came to a screeching halt and 12 doctors and 18 months spent sleeping, I was finally diagnosed. My diagnosis is Fibro/ Intrinsic Factor Antibody with Pernicious Anemia. This is when your body creates an antibody to B12. I will never absorb B12 through my digestive track again. It took so long to get a diagnosis other that, she is depressed, that my bones were breaking, the constant pain was so serious that I broke my leg, went to the hospital, was sent home after being told that everything was free be, and 3 weeks later found out that my leg was broken. The pain is a constant. I was fatal when finally diagnosed.
I have learned to overcome my fear of needles and self inject my B12. Needles are keeping me alive so I accept that now.
I recently found, themighty.com, I think you would be a valuable contributor. I really enjoy reading that I am not alone in this world with a chronic, little known illness.
Thanks, useful advice and good books. I am in same boat now :-)
Hope we get well.
Hang in there Jodi. Appreciate sharing your personal struggle.
A good friend sent this to me as she knows my daughter is at the beginning of a possible life of chronic pain. She has something on the auto immune spectrum but as yet we do not know what. I will share this with her, but not just now, she is aware this will probably be life long but is not really prepared to accept it yet.
Thank you for sharing.
Thank you. No advice – just a thank you for sharing.
Wish you all the best.
Wow. Thank you for sharing so much of your story and your resources and strategies for getting to a new “normal.” Sarah Peck sent me here because I’m working on a documentary about Invisible Illness and would LOVE to talk with you more and perhaps even interview you for the film. Wishing you all the very best in your healing journey!
Pls check your inbox! <3
What a brutal graphic! Just a different type of journey. Have complete confidence in your reaching your destination. Namaste.
Jodi, I’ve enjoyed reading your blog so much. I read a bit of it every day. This morning, while reading your entry regarding your constant pain, your mention of having developed Reynaud’s, and the fact that you no longer have fingerprints certainly caught my attention. I have a rather severe case of Reynaud’s, and my fingerprints have also disappeared! I’d never connected the two, but now that you mentioned it, I suspect they are related.
I discovered that I was “printless” a couple of years ago when I went through Customs and Immigration in Panama. The immigration officer was pretty frustrated that my prints wouldn’t register, so I took that to mean this was not a common occurrence. It certainly was a shock to me.
I hope you pass a most pleasant winter in Oaxaca. I’d thought of visiting there, but I thought maybe the altitude would not be good for someone with Reynaud’s. Please keep us posted, and best wishes for your recovery.
Thank you for the kind comment. I wasn’t sure — and no one can confirm — whether it’s the Raynauds or the celiac that has led to print disappearance but definitely a strange mix! For Oaxaca, it’s only the height of Denver, not that high :)
I found “Legal Nomads” while scouting for information about Thailand. Since then, I’ve been an irregular reader, so I’m late to your post about chronic pain. I’m very sorry to hear about your suffering, but I’d like to encourage you to keep writing about it. If you feel the need, start a new blog for talking about both soup and pain.
This request may sound both glib and cruel, but I speak from experience. For many years, I’ve suffered from depression. It comes and goes, but never disappears. When it’s very bad, I take a high dose of medications, which offers an odd sort of relief that makes me feel like somebody else. That sensation quickly becomes disorienting, so I avoid meds when I can. Unfortunately, low daily doses have no effect on moderate depression.
Believe me, absolutely nobody likes to hear me talk about this. In fact, it makes most people visibly uncomfortable. Given that, I’m always surprised that there are so many people who are interested in reading about depression, and I’m not talking about the latest journal article on selective serotonin reuptake inhibitors. Sure, there’s too much pop-psych garbage, but there are also some great books like William Styron’s “Darkness Visible.” Large ambitions aren’t unrealistic.
You’re an articulate writer and an acute observer. Pain is a big part of life, so it’s something everybody wants to understand. Chronic pain is extreme, so people will be open to the idea that your understanding might be better than theirs. Just don’t forget the soup. The right mix is crucial.
Dear Jodi, thank you for sharing your story. I initially came across your blog from taking a year off to travel, but have kept coming back after coming home because I am enamoured by your writing. I am sorry you have been suffering, and for so long.
I see that many people have offered advice in the comments section. Actually I would like advice from you. I am an Infectious Diseases specialist, and in clinic we have patients coming in sometimes with your ailments – pain, fatigue and other things we can’t explain after viral illnesses, Lyme disease, all sorts. We doctors, it seems, are perfectionists too, and because it implies failure on our part to not be able to explain a condition, I have seen in my training years that often we dismiss patients’ symptoms instead. There is an insidious implication that they are ‘weak’, ‘fragile’, ‘making it up’, or the ‘too-hard basket’.
I don’t think this is the case, as I have listened to several patients and seen them at wits’ end, but scholars tend to be black and white. What I would like advice about, from a human level, is how I can best help patients like you. I have been afraid to broach things like meditation to patients for fear of sounding like a quack instead of a real doctor, even though I have peronally experienced the benefits of it in my own life. I want to know how to balance giving advice (when truthfully I probably have run out of advice in this evidence-free zone), vs frustrating the patient with more advice that seems superficial and pointless, or simply saying I have no answers and fear their anger and/or disappointment. I want to know how I may be the best doctor to a patient like yourself.
My only medically-based advice would be to re-do the investigations (which I’m sure you’ve done many) again in the next year or so, as some autoimmune diseases often have a clinical prodrome that begins before the markers we have, which are at best non-specific and imperfect, can detect any abnormality.
As a travelling spirit to travelling spirit, I wish you well my friend.
So sorry to hear about your chronic pain, Jodi. I won’t be giving you one of those “hang in there”s. Because I have seen the after-effects of Dengue myself when it hit a couple of family and friends. Its a wonder they were even walking after 6 months. I can’t even imagine you going through the pain even after 3 years.
You are an inspiration to many.
Im so sorry to hear about your chronic pain, but I’m happy that you are sharing this with the world and how you are coping with it. I think that you are coping with it in a very educated way. Uneducated being, popping pain pills and hoping it masks the pain enough, because this isn’t the answer.I truly feel that people who deal with chronic pain need someone like yourself who they can see is willing to beat the pain, facing it and winning. Not letting it get you down, at least not permanently. Not masking it, or hiding it, or hiding from it, by drowning yourself in medication. I had a serious injury and i had to deal with chronic pain for about 3 years, and it was hard to hear people say to “get surgery” or “take a pain pill”. I’m thankful that I no longer have that challenge, but my heart goes out to those who do. If I had someone like you it would have helped me get through the pain in a more positive manner.
Thank you for sharing Deborah! I wish you all the best also.
Jodi, I came down with dengue a few years ago. It’s a horrible thing to go through for sure. At that time, I did some internet research to come up with anything I could to find a cure. As you probably know, there is no cure but what I did come across was that papaya leaf juice helps to restore the blood platelets that the dengue destroys. So, I found a juice bar that would make the juice for me and I drank it a few times. I’m not sure if it had an effect or not because I had no way to measure it. I can tell you though that it tastes worse than wheatgrass juice. — I just Googled blood platelets and pain and there seems to be a connection although I didn’t get into it extensively. It seems like blood platelets would restore themselves over time but I thought you might want to investigate it further. Other things that might be helpful are a good quality curcumin which is in turmuric and also maybe gelatin, from a good source. I’m sure that you’ve done a lot of investigation and may have already come across these things.
Hi Dennis thank you for reading and writing in. I’ve not looked at papaya leaf juice but will investigate! Yes, turmeric and gelatin all good – though I’ve stuck to bone broth for the latter for now. I don’t take turmeric as I find it doesn’t sit well with my stomach but use it in cooking where I can. I also find that diatomaceous earth has helped with joint pain (food grade of course).
Jodi, this has been quite the surprise. I found you on Twitter, interested because I, too, have celiac. As I read your blog, I further identified, as I have lupus, Raynaud’s, migraines, etc. (As you know, autoimmune diseases never come alone.) I am very fortunate to have the most supportive spouse possible. Chronic, sometimes intractable pain is difficult, but I find the emotional aspect worse. I work hard, too hard, at appearing “normal,” so even my dearest friends don’t fully understand my circumstance. No one but my husband sees me at my worst. I have learned to schedule activities days apart, in short spurts, and pace myself. Yet I still get the “Can’t you just push yourself?” and “You look fine” lines. I was always the over-achiever, hardest-worker, do-it-all person. The adjustment continues, as you well know. I decided day one that my illness would not define me, and it hasn’t. I rarely discuss my medical issues and generally don’t consider myself as “sick”. You have a positive outlook and a wonderful focus. I admire your ability to adjust and shift as needed. I do hope your pain improves and wish you much success with your evolving projects.
Hi Susan, thank you for the kind note and for reading. I think I have backslid into letting it define me more when things are flaring, but I suppose that’s all part of the journey, and so long as one tries to keep perspective it tends to even out in the end :) I agree that the emotional aspect is the hardest part – a shorter fuse, a more opaque road to finding balance, etc. I am grateful for this platform to share this post, so that my friends and family can understand more about why I may sometimes look normal but feel terrible. Thank you for sharing your own perspective so elegantly.
I don’t know exactly why I’m writing this. I don’t usually comment on blogs, and besides, it’s the first time I read you (from a link posted by mark wiens on twitter, btw). I think it’s just that I felt understood when I read your post. I’ve been dealing with fibromyalgia (I don’t know if you got diagnosed with fibro, but your symptoms seem just like mine. pain all over, like a permanent flu-like feeling, and an incredible fatigue). I’m much better now, I think 5 years passed since my initial diagnosis, and the first years were almost unbearable, because I couldn’t find ANYTHING that would help. in my case, it started because of work stress, I think. I’m a PhD student and at that time I was also doing some teaching and taking a lot of classes… if I had any infection that caused it, I wasn’t diagnosed. I don’t think so, because I was always slightly feverish, but not much. however, the “breakbone” feeling describes it perfectly, alongside something like a flu-feeling. I think weeks passed while I was totally locked up in my house, almost all the time in bed. it’s a miracle I kept my job, because I couldn’t even work from home, my head was in an ugly fog. I couldn’t think. also at the same time I developed rheumatoid arthritis, so I had to deal with the treatment, which is not at all nice. it’s like a light version of chemo, and I’m lucky it caused my RA to recede temporarily, which is not normal. I’m no strange to migraines, or raynaud’s… luckily I live in buenos aires, here it’s never too cold :P
I’m not a nomad, but I love to travel. when I travel I feel that my symptoms ease a little. I can do things I couldn’t in my usual life. I know de-stressing has this huge impact for me. I think the trip to thailand-vietnam-myanmar was one of the best things I’ve done in my life, and I felt pretty great most of the time.
also, yoga, meditation, changing my eating. in my case, what worked best is a pretty low carb diet, without refined sugars, MSG, aspartame, and I try not to get a lot of nightshade vegetables or lactose. yeah, this is really difficult when travelling, I can’t imagine if you suffer from coeliac’s. I try to avoid gluten because coeliac’s runs in the family and I feel better avoiding it, but cross-contamination doesn’t cause a strong reaction in me. also I ditched all caffeine (it was difficult because I was drinking coffee AT ALL TIMES and I totally love it, but I sleep much better and I’m not crashing at 4pm like before), and a magnesium supplement at night.
I’m not the same I was before, but I’ve also grown. I mean, sometimes I just want to go back in time to never get sick in the first place. but I know that’s impossible, because I was always pushing my boundaries. this HAD to happen one time or another, because it’s the only way I learnt to respect my own body and its needs…
well, I’m trying to get back to “close-to-normal”, it’s difficult for me to do some things. I have a really big fear of going out for several hours, specially at night. sometimes I think I will get so tired and won’t be able to come back home, or that I will trigger a flare-up, so I avoid doing things I want to do, and that’s not good. I mean, going out with friends and all that. it’s kind of difficult to stay connected.
well, I think that’s all. I think I just wanted to connect with someone who understands… and send some hugs. not squeezing too hard, just in case :)
Thank you for sharing your story with me. I’m sorry you’ve had to deal with something similar, but as with the other comments I feel honoured that my writing made you feel more understood. Wishing you happiness and health <3
Jodi, I gratefully discovered your site yesterday. I too love words, read avidly, but will attempt brevity here. After hesitating to share my story … so many have, and I understand begin plagued with well-wishing advice … I decided that it’s wrong to assume you have ALL the information on options, so here I am. I was a dancer for 30 years, looked 25 when I was 50, still performing, running up the subway steps in NYC; VP of International Banker as my day job, which most artists need; and had a good psychic/healing practice, during which I was able to offer substantial help to many. Super active, super busy, super energized, super healthy and vital. At 49, contracted an eye infection, so virulent that my Chinese acupuncturist/herbalist sent me to a hospital emergency room … massive doses of antibiotics. Unable to mitigate the adversities of the antibiotics, and 2 years later, my thyroid and adrenals “crashed.” I gained 100 pounds in 6 months (ended my long run as a dancer!), was unable to leave my home for days at a time, developed Chronic Fatigue Syndrome and all attendant symptoms. Chronic pain for 17 years now, flu-like symptoms, low grade fever for years, brain fog, mild Raynaud’s, etc. The Spoon theory resonated with me, as I still can do only so much in a day and need to set up my energy for planned tasks. Most of my life is spent in bed (with books). A few years ago, recovery began when I started taking moringa oleifera … CFS & Fibromyalgia gone, thyroid & adrenals much more functional. Then 2 years ago, I began taking Protandim, which is a Nrf2 Activator: turns on something in your cells that causes huge production of antioxidants. Of course, my one wonderful cup of coffee in the morning, meditation, gratitude for sparrows, clouds, grass, trees, clean water (moved from NYC to Colorado Springs 13 years ago), other herbal supplements but these 2, moringa (in a breakfast smoothie) and protandim, have been pivotal in my recovery. Recently began craniosacral treatments that are helping tremendously. Still dealing with various levels of chronic pain and lack of mobility and strength, and my saudade for dance! But I now see some “hope for the flowers,” and felt an obligation to share with you … just in case you hadn’t encountered either moringa or protandim. Even though I awaken daily, expecting the faeries might have removed all physical anomalies, there is no magic pill. A combination of tools, which may or may not shift over time, diligence and lots of patience. My apologies if I’ve intruded with no epiphanous information, but was moved to share with you. I am deeply grateful for and moved by your post here. Thank you. (Aren’t you glad I aimed for “brevity”?)
Jodi, I was surprised to read this post, of course after reading your wonderful travel/food posts I would have never thought that you were suffering from chronic pain. I admire you for the way that you have chosen to accept your reality and for being brave enough to do something about it. I have been noticing changes in my body since I recovered from a bad episode of the shingles a couple of years ago. These changes have not been easy to accept for me. Your story gives me the encouragement that I need to accept who I am and a great reminder to be grateful for all the good things in my body, the great people in my life, and my surroundings.
This is a beautifully written and moving post. I have a chronic illness and am intimately familiar with the Spoon Theory and many of the feelings you shared. The isolation can be debilitating – even when you have people in your life who care for and about you. I found great joy in my own travels – it opened up the world to me and helped take me out of my own struggles. And even though the pain and fatigue were limiting, it was important for me to do as you suggest and relish in what I had already accomplished be it that day, week, or month. Thank you again. I hope you are feeling well these days.
Dear Jodi, Thank you for writing this.. I relate so much to it. I suffer from chronic hereditary pancreatitis, which means I get attacks of pain and awful debilitating weakness. I’m a musician and tour with a band who are absolutely wonderful and let me sleep in the back of the van, carry all my stuff and generally look after me. I’m slowly learning how to look after myself and be happy doing less crazy things.. This autumn I’m going to Egypt, alone, to meet and play and learn from musicians there. Just need to make sure I have safe havens to rest in when my body tells me to. It’s going to be difficult but I’m determined to make it good :) Sending love, Tamsin x
Please rule out hyperparathyroidism by having your calcium tested.
The one thing that has worked for me is not naming my problems like, I’m having a panic attack, I suffer from anxiety disorder, existential crisis, depression, chronic back pain, etc. etc.
Of course, this doesn’t mean I don’t have them or I don’t have to address them. I do address them when I go for my checkups, explain them in detail to my masseuse. But, I avoid blurting them out in a normal conversation.
This has enabled me to do two things:
1. Treat my issues/pain as just another issue.
2. Avoid staying in the comfort of my ‘named’ problem.
I realized I liked to say I’m having a panic attack everytime my heart pounded crazily, my hands and legs felt numb or anything that had to do with panic attacks. And this had become a habit for me to back off anything I was doing. Sometimes, it was a good thing, I felt safe and realized what I was going through. But most of the times, I just liked staying behind my panic attack which made me feel miserable and even more panicky.
The same is for my ‘chronic back pain’. Yes, my back hurts like hell and yes, it’s chronic. But just saying, ‘I’ve a chronic back pain’ to myself and my closed ones everytime I feared doing anything because of it only lowered my morale and made me helpless.
Changing the perspective to treating it as just pain didn’t solve my problem but it surely changed how I looked at the day ahead. This changed my everyday conversation with my closed ones to much more relaxed ones, without the talks about my ‘chronic’ pain or ‘anxiety’. This made me confident by the day and positive overall. This doesn’t mean I don’t talk about them anymore. I do, but most of the times because of the change in mindset, it’s how I’m getting rid of it, not how it’s hampering my daily life.
Also, I read in a recent article (https://aeon.co/essays/to-treat-back-pain-look-to-the-brain-not-the-spine) that sometimes, you might not have any pain but your mind likes to feel it anyway. I feel not naming it may have also given my brain a chance to chill and think rationally, for once lol.
In all, this one thing has been so positive for me that, despite my ‘chronic back pain’, I’ve gone for a 7-14 day trek TWICE. Yes, I was fearful and yes, it did hurt a while. But, when I was back, I only wanted more.
And, right now, my lower back doesn’t even hurt. I don’t know what worked and what didn’t. It might even relapse. But, not naming my pain definitely brought a new confidence in me to tackle the unknown world of pain.
Thank you for mentioning the 100/10 idea. I plan to try to put this into practice…very, very good idea.
What is the 100/10 plan?
I landed on your site through one of those classic internet wanderings and had to read this post. I have psoriasis, psoriatic arthritis, fibromyalgia, and Crohn’s disease. The first 2 started in my teens with the arthritis exploding on me in my 20s then calming a bit then returning full force, fibro in my 40s, Crohn’s around the age of 50. In other words, my chronic pain has other sources than yours and I have a few decades head start on you. :-)
I found it really interesting to read this from someone early in the process of living in pain. Some of it really took me back. One BIG difference though is I grew up in a family that was always more about enjoying life than about having “success” and Mother always said I seemed to get a kick out of just being alive even when I was a toddler. (other points I had a head start on, I suppose.) A couple of comments re: other things I’ve learned along the way.
One key to my happiness – and I am a happy person who happens to have health problems – is focusing on what I CAN do and, as much as possible, pushing aside the things I no longer can do. In my teens I considered trying to play clarinet professionally until the horrid hand pains began. (Daddy had RA so I had an idea of what my future probably held.) If I let myself think much about that, it still rips my heart out now that even holding a clarinet properly is prohibitively painful. I can’t even sing in choirs now because of rib pain. But I still can hear and I still have music and nothing makes life right for me the way music does. I know I will never again spend 2 months wandering around Italy. I also know how fortunate I am that when my arthritis was somewhat calmer for a few years, my husband and I milked that time as much as we could before it started to rage again. (We did go to Rome again 5 years ago, but no climbing the dome of St. Peter’s for either of us these days.) I know that I did what I could when I could and I have wonderful memories of that trip, along with others we took back then. I haven’t done what you’ve done, but I’ve done much that millions of others will never be able to do. But I’m carrying on about this part.
Beyond finding things I can do that bring me joy, I’ve learned to find joy in the things around me. One recent Sunday morning I spent 90 minutes just sitting on our back deck watching the various birds at our feeders and the squirrels running around and it was magical. I *did* nothing – except soak it all in an appreciate it. Even tedious things such as running errands when I feel lousy can bring some joy when I focus on being nice to the other shoppers and on smiling at people – even if I’m periodically stopping in an empty aisle to give in to the pain for a minute or two before continuing.
And since I’ve had the internet, online connections to others with similar ailments and attitudes have been invaluable. I have friends who are kind and helpful, but they don’t really know. Having friends who absolutely know about those days when pain and/ or fatigue won’t let you do anything and who also understand your tendency to try to do everything on a halfway decent day is great! (except lecturing another person about overdoing it isn’t very effective when you do it yourself. lol)
And I agree soooooo much with you on the gratitude part! I’ve had people, including my doctors, comment on how much I smile even when they know I’m in pain. I’m not faking it. Aside from my health problems, I have a really good life.I have a loving family, a great marriage, good friends, a roof over our heads, heat in winter and a/c in summer, enough to eat, and I live in the lovely NC mountains. Appreciating the good makes it so much easier to live with the bad.
Want a chuckle? Of all the ‘alternative’ cures that have been suggested to me, this one took the cake. Abuot 15 years ago a massage student who was a neighbor invited me to go with her to a seminar at her massage school with a man who had been having great success curing illness – including cancer! (of course) – by doing acupuncture….. on dolls! Not bursting out laughing took every ounce of self-restraint I had. Luckily we really did have some plans for that day. She did give me a good story to keep telling though…….
wishing you some decent days among the rough ones!
Hi Jody — Just discovered your blog and am engrossed. Just had one tip — I also suffer from chronic severe Raynaud’s, and have even had surgery (cervical sympathectomies) to restore circulation. Even with this I always have difficulty with the TSA fingerprint scanners — it seems that Raynaud’s and fingerprints are not compatible! A tip that usually works for me — before you have to use a scanner, spend a few moments running your fingers across your face. (People will look at you strangely, but who cares?). The combination of the heat in your face and the oil on your skin will frequently plump up your fingertips enough that they will register in the scanning device.
As someone who’s never experienced anything as remotely difficult as what you’ve gone through, I just want to thank you for sharing your story. Chronic pain research is severely underfunded and every person who finds the courage to share their experience only brings more attention to the issue and brings us one step closer to finding cures. Wishing you the best.
Your blog is great. I suffered a stroke two yrs ago, and I lost my left foot mobility, but I am doing a lot of exercise, and it is getting better. After travelling for 16 yrs, I came back to my hometown in Argentina 2 yrs ago. But I mean to travel again next year. I am 41 yrs old, and also drink just one cup of coffee per day, no sugar in it. Thanks so much, best wishes to you!
Thank you Ana, best wishes to you also and I hope you can travel soon, at whatever pace you are comfortable with. <3
Hi, Jodi. So thankful I found your blog today. I feel I’ve never nodded so much in agreement in my life. I’ve been dealing with chronic pain since 2007, and it definitely took awhile to accept a new normal. But I couldn’t agree more; acceptance, self compassion, and gratitude have been the lifelines that have helped me through this. And it’s so true how hard it is to get past the brain eff of still thinking – if I were just strong enough I could somehow will this away… a result of our culture of ableism and what I’ve heard some other “spoonies” call “inspiration porn.” I’ve read the books you’ve suggested, all absolutely wonderful. Have you also read How To Be Sick by Toni Bernhard? It is wonderful as well. Anyway, I appreciate you and thank you for sharing your story. It always helps to read another persons experience with invisible illness and to further the feeling/knowledge that we’re not alone.
Thanks for sharing your story . The pain you have suffered is quite horrible and the way you fight with it is just awesome.
I was encouraged by your article, as I too suffer from chronic pain.
Thank you for posting this.
It is wonderful to be here with everyone, I have a lot of knowledge from what you share, to say thank you, the information and knowledge here helps me a lot
Dear Jodi, I can not begin to thank you for sharing your story and experiences! It literally gave me life today as I too, have a serious chronic illness that I have been battling now for 3 years, with tons of meds and supplements to no avail, other than very short breaks here and there, with some relief and feeling like my old self again, not not the same.
I am also alone with no support system, no friends or family in my life anymore, and feel most alone and cut off from the world. When you have chronic illness, the world quite often does forget you or give up on you, when you can not join in and do the things you used to do, as they still can. The pandemic only makes this more of a challenge, as does the world of technology we are living in today, where we are now so cut off from one another even more sadly.
I was at my end today with it all after fighting so hard for 3 years to get well along with the anguish and despair that goes with the reality of still being ill and coming to terms with this illness and impact it has made on my life, and in being alone with it all too. Then, today I came to find your website and your incredible and courageous personal story and I can’t begin to tell you what a huge gift it is for me, in helping me to come to stop fighting and to learn to finally embrace and accept my serious pain and symptoms too and the need for me to finally let go and get back to living again and not being in chronic “survival mode” which is not living by no means, as you know.
This has been the hardest for me, as I have always kept the hope alive that I will in fact beat this someday, but in doing so, I have gotten into this personal struggle, just as you described that you had gone through, and I am completely exhausted and have come to this same realization as you did, where I am powerless to control this illness, and fighting it, especially in taking so many meds all of the time and the battle of just that in itself each day, is killing my spirit and the essence of who I am. I am just a shell of myself right now, barely hanging on, but in my heart I know something must change and that the change must in me with accepting and embracing my illness for what it is and letting go of all the rest, and to stop fighting it.
Thanks to you, and to the gift of my faith, I will begin the process of doing just that, in finally letting go and embracing it for what it is, and not holding on to the constant thought of wishful thinking that “someday” I will be healed, but rather changing my attitude and thought processes within myself by embracing life again with a new perspective of gratitude, joy and love! Bless You! For we are alive and each day is a gift! And we are greatly LOVED always too, even if we feel lonely, we are never alone. Bless You & Thank You!!!
Hi Kristina, thank you for this incredible, heartfelt comment. I’m so sorry for what you’ve been through, and I appreciate learning a little bit about your story. As you move into a place where you take back some of your agency, please do keep lots of compassion for yourself. The shift in attitude is tremendously different and no one is perfect. I recommend starting with Kristin Neff’s Self-Compassion, as recommended in the piece, if you are able to read pain-wise right now. All the best to you <3
Thank you for sharing your blog.