November Link Up with A Chronic Voice

I’m getting a bit of a late start on this month’s A Chronic Voice blog Link Up party, but better late than never. This month we were charged with sharing how we are discovering, rediscovering, anticipating, decluttering, and cherishing our lives with chronic illness. Read my take below, then follow the link above to add your own!

Discovering

This month and every month, I spend time combing the Internet in an effort to discover new information about my illnesses. I’m a researcher by training and since I no longer work, my research project has become my own health. I follow academic journals, as well as a number of medical professionals so that I am search_personexposed to the latest findings. Although I’m trying to declutter my treatment plan (see below), I’ll never stop tweaking it as I learn new things.

 

Rediscovering

As I write this, cold has finally set in. I had to turn the heat on for the first time last weekend. So I am rediscovering the warmth of flannel sheets, fuzzy slipper socks, fleece blankets, thermometerand down coats. When you live in Vermont, you have to embrace all four seasons. You can’t appreciate the warmth of spring and summer without also enduring the long, dark winter. Can you tell winter is not my favorite? I’ll make the most of it by burrowing into everything warm.

 

Anticipating

Having several chronic illnesses, the holiday season has lost a little of the excitement it held before. I still mourn the foods and activities in which I can no longer partake, onesIMG_20131204_195916 that would now trigger a migraine or bout of IBS. That doesn’t mean I don’t find joy in the holidays. The season does evoke some of the anticipation it did as a kid. I think this is partly because I have a nine year-old nephew whose excitement is contagious. He started his Christmas list in July and still believes that Santa visits on Christmas Eve (talk about anticipation)! I also find it really satisfying to try and find the perfect gift for everyone on my list, even with my now limited budget. That brings anticipation to Christmas morning as I wait for everyone to open their gifts.

Decluttering

I am aiming to declutter my treatment plan. I just went through a busy two months of exploring some new diagnoses; running new tests, seeing new specialists, and making 20171030_142020.jpgsome minor treatment tweaks. I’m also closing out a year of intense focus on my migraine treatment. So, in all, I’m trying to weed out those treatments that don’t work and narrow my plan to the ones that seem to have the most benefit: the medications, devices, and practices that give me the most bang for my buck. Constantly visiting doctors and trying new treatments has been mentally and physically taxing. It’s almost winter. Time to hibernate, conserve energy, and prepare for a healthy spring!

Cherishing

Like most people with a chronic illness, I try to cherish the good days. I need to do this more. I’m learning the patterns of my symptoms. Due to my treatment cycle, I seem to get a few good weeks right after I have Botox. Then, as it wears off, I seem to revert to a merry-go-round of high pain/moderate pain days until the next round. Now that this pattern has held for two cycles, I’m thinking of ways I can make the most of those 2 to 3 weeks where my migraine symptoms are most tolerable. This time it will coincide with Christmas and New Year’s Eve! As this pattern continues to hold, I think it will also help me let go of large amounts of trigger anxiety and self-blame I’ve been holding. When the migraine symptoms return and I’m back to daily moderate or high pain, I often think “what did I do yesterday to trigger this?” The fact is, the pattern just seems inevitable. This frees me up to enjoy more things I’ve been afraid to include in my life and cherish the good days more.

Happy Thanksgiving to those who celebrate and please check out my other blog posts! Thanks for visiting.

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Beth Morton, Phd, (Honorary) MD

dr_google_2Tell me, what would you think if you walked into the office of a doctor who had this posted in their waiting room? A web search seems to indicate some doctors have posted it in their offices and you can get it printed on mugs and t-shirts. With so much information at our fingertips, part of me can understand why a doctor might be tempted to post this. They are medical professionals and we are living in the age of “Dr. Google.” However, something doctors don’t always understand about those of us with chronic illness is that we can’t help but become honorary MDs, especially in the information age. They may not realize that healing ourselves is often our full-time job. This makes us the experts of our own bodies and, in a lot of ways, our diseases, too. In fact, we may be more up-to-date on the current treatments than some of our doctors. That said, it’s pretty obvious that our relationships with our doctors are incredibly important in moving our health forward. For me, this all boils down to finding doctors who are willing to collaborate.

I’ve seen several new doctors recently. The experience highlighted stark contrasts in styles of care. Let me back track and share how I came to realize this. After a year of actively trying to improve my health, I felt like I needed to reevaluate. I had tried a lot of treatments. I had also learned a lot. However, despite all this, I felt like I wasn’t making any progress.

Armed with recent articles from journals and professional meetings, and questions inspired by conversations with fellow patients, I made an appointment with a new primary care physician. At that first appointment, I “confessed” to her that I am a very engaged patient. I told her that I would likely come with ideas from research articles and that it wasn’t my intent to cause disrespect. I felt the need to preface our relationship because of a bad experience with one of my current doctors. This other doctor is pleasant. She listens and answers my questions. The problem is she never seems to hear me. When it comes to my actual treatment, she has a plan and my suggestions don’t hold much sway. She would never hang this sign in her waiting room, but she might have the mug back in her office.

Anyway, my new PCP took my admission in stride. Not only has she been patient with all my questions, but she’s agreed that many of my ideas were worthwhile. Because of that, we’ve even identified new treatment directions. These new directions are what led to my appointments with new specialists. As with my PCP, I worried that going in armed with questions and ideas would put the new specialists on the offensive. As it turned out, I shouldn’t have worried. My new specialists were equally patient in discussing the research I had done ahead of time.

When I’d had a chance to reflect, it struck me that I’m really working with two types of doctors. One who sees my knowledge as challenging hers and prefers to ensure she stays the advisor and me, the advisee. And others who can appreciate that a patient like me will come in having done their homework and be okay with some collaboration. I wish I could say I don’t have time for the former. That I dump them, find another, and move on. However, the reality is that I’ve moved to rural Vermont and there isn’t always another option. I need to make it work.

For me, there have been two lessons. First, I’m not going to stop researching treatments. I know the potential pitfalls of playing Dr. Google, but I’m smart. I happen to have a research PhD. It’s in a social science field, but it’s taught me how to be a savvy consumer of research. Second, I’m quickly going to get out of my depths. That’s when the best case scenario is that I have a collaborative doctor, one who will hear my ideas. Navigating the health care system and my chronic illnesses these past two years have taught me a few things. I don’t have all the answers, but I’ll share a few thoughts.

  1. Don’t be passive in your treatment. Being passive never even crossed my mind. Being active is exhausting. However, I believe I owe it to myself to be engaged. This means gathering all the (good) information that I can. I wouldn’t want to think I missed anything relevant!
  2. Get your information from smart people and organizations. This is kind of like weeding out the fake news. I make sure to follow (on Twitter, Facebook) professional organizations, foundations, patient groups, physicians/advocates, and academic journals. I’m still a member of Facebook groups, but anything I see shared there I try to corroborate with a reputable source. For example, I read on Facebook that plastering a banana peel on my forehead would stop a migraine, but I’m still searching for the scientific evidence. (Anyone?)
  3. Use your time with your doctor wisely. I try to prioritize what I want to talk about: my top questions and suggestions. Given my anxiety, I literally prepare notes.
  4. If your doctor doesn’t appreciate collaboration and you have the option, find one who does. There is no reason to stick with a doctor who isn’t hearing you. Obviously, switching isn’t always possible. When it’s not, be diplomatic. Be calm. Look for others who can help. When your neurologist won’t hear an idea you think it worthwhile, talk to your PCP or look into a pain management doctor.

Contrary to the meme, evidence suggests some of my recent ideas were good ones. It also triggered for me a realization of the different patient-relationship preferences doctors have in this information age. This only scratched the surface of why this meme got to me, but you’re a champ for getting this far. I couldn’t make it longer. I’ll end with a question:

Do you have other tips for keeping up a healthy (or working) relationship with your doctor? Please share!

Related reading:

Doctors Tell All — And it’s Bad

An Open Letter to the Headache Doctors Who Treat Us

 

October Linkup Party with “A Chronic Voice”

I was in need of inspiration for my next post when I came across the blog linkup party sponsored by Sheryl Chan from A Chronic Voice. We’re given five words to use as prompts for sharing our experiences living with chronic illness. This is the first month in which I’ve participated. I found it to be a really nice way to share some brief thoughts on everyday life with our particular disease – in this case, what inspires me, what I dream about, what I need to reduce and want to create, and what I am listening to.

october_blog

Inspiring

There are some fellow migraineurs who I have come to admire for their advocacy and the support they provide the migraine community. They have inspired me to think about what I can do to advocate, too. It has taken me a while to get to this point. I needed to work through the anger, pain, and loss of chronic migraine, and the frustrations of trying and failing various treatments. However, now I’m coming to accept my current situation. Acceptance has given me more energy to think about what I can do to help others going through the same “journey.” First, I hope by sharing my experiences through this blog, I can help others avoid some of the struggles that I went through. Second, I want to start doing more in the migraine community. At the moment, I’m judging my capacity and learning what is out there. With time, I hope I can also contribute to migraine advocacy.

Dreaming

I dream about getting my symptoms under control enough to have a few predictably “good” days in a row. I dream about having a migraine-management plan that works so that when my pain and other symptoms flare up, I have a working abortive plan. If I had these two things, my world could get so much bigger – I mean that figuratively and literally. It would mean getting back some of the life I had before chronic migraine hit. I don’t expect life to go back to “normal,” but I do dream of gaining a little ground rather than feeling like I lose it.

Reducing

I need to reduce the amount of time I spend on social media. On one hand, because of my chronic illness, the internet is what keeps me connected to friends and family. It’s also where I share my experiences and try to advocate for other migraine patients. On the other hand, a percentage of my time can definitely be considered wasted online. These days, it’s easy to get sucked into the drama of Facebook or Twitter. Something might seem helpful or useful in the moment, but I later realize that my energies would have been better spent elsewhere (e.g., offline, on myself). I’m resolving to take more breaks from social media and put my energy elsewhere – get some exercise, read, or… create.

Creating

In June, I took part in a fundraiser for migraine advocacy and research. As part of my fundraising efforts, I promised the first person to donate $50 a hand-knitted gift. I only learned to knit last winter as a pain distraction. It took me all winter (and part of the spring) to finish a very simple scarf. So I’ve been meaning to figure out something to create for my friend, Alyssa, who so generously donated to my fundraising campaign. If there are any fellow knitters out there who have ideas for easy knitting projects, do share!

Listening

I’m trying to join a book club. I say trying because there are a few hurdles to overcome like getting the books in audiobook format with time enough to listen before the group meets and feeling well enough on a Friday night at 7:30p to even make it to the gathering. Anyway, this month the group has chosen to read “The Age of American Unreason,” by Susan Jacoby. It’s described as a cultural history of the past forty years. Migraine brain means I often pick light, mindless mysteries or dramas that I can listen to without having to engage too many brain cells. This has me intrigued, though. The description of the book includes the following: “Sparing neither the right nor the left, Jacoby asserts that Americans today have embraced a universe of ‘junk thought’ that makes almost no effort to separate fact from opinion.” And this was written in 2008! I guess my hope is that reading this book will help me understand how our country has gotten to where we are today. That’s all I’ll say on that topic, for now.

So there you have it! How I’m spending October inspiring (or being inspired), dreaming, reducing, creating, and listening. What about you?

Applying for Disability: Opening Old Wounds

I’m checking back in after a bit of an absence. I haven’t garnered a huge following yet, so it’s unlikely anyone noticed I was missing.  However, I had gotten back in the habit of writing, so I noticed its absence.

To be honest, I have been doing quite a bit of writing lately. It’s just that the writing I have been doing hasn’t been a satisfying substitution for my blog writing. Last month, I completed the initial paperwork for Social Security Disability. It is a lengthy process and I can see now why people either put it off or give up on it. The process involved completing detailed online questionnaires about my personal, medical, and work history. To complete all of these forms, I spent a lot of time organizing the last two years of doctor’s appointments and medical records, and the last 15 years of work history. I hit submit and breathed a sigh of relief thinking I was done. About a week later, I received in the mail an even lengthier set of forms assessing my functioning, work history (again), and “headaches.”

Collecting the relevant information was hard enough, but the most mentally – and emotionally – draining part was answering questions about a typical day, how my illness has affected my ability to work, and how it has changed my social activities and hobbies. I was also asked to describe how I feel before, during, and after a “headache.” I keep putting headache in quotes because that is their phrase. Throughout my application, I kindly corrected them and explained that I have chronic migraine, a neurological disorder of which headache is just one symptom. I do this not to antagonize, but it is just one more opportunity to educate. You see Social Security doesn’t list migraine as its own category of disability even though it is now the second largest cause of disability worldwide.

Back to the questionnaires, though. These questions asked me to rip a band-aid off wounds I have been trying really hard to heal for over a year. Take for example this open-ended and overwhelming question, “What were you able to do before your illnesses, injuries, or conditions that you can’t do now?” How do I even begin to answer that? My life has changed so dramatically in the last 18 months that I’m not sure I can even remember everything I used to do that I can’t do now. If I could, my response would likely go on for pages. So I gave a sampling.

I explained much of what I’ve described to you in earlier posts. I don’t eat the same foods. My diet has been restricted to avoid common and not-so-common triggers. This makes eating outside the home challenging and eating in general stressful. I can’t support myself. I don’t have mental or physical stamina to be a consistent and dependable employee. I stepped out of my career right after finishing my PhD and that has been immensely disappointing. I don’t travel to new places or to visit friends, because sleeping in a new place can trigger a migraine attack. The physical process of travel itself – flying or long car rides – can expose me to triggers. I’m not as physically active as I was. Paddling is one of my favorite things to do, but I haven’t used my kayak in two years. When I lived in Boston I attended concerts, theater, and sporting events, but most of these types of events would be impossible now without triggering a full-blown attack because of lights and sounds. I can’t read physical or e-books. The eye movements either trigger migraine or worsen symptoms. I now rely on audiobooks.

I described how chronic migraine has changed my life and my personality. I was always more of a planner and introvert by nature, but now I have no choice. There is no such thing as a spontaneous meeting with a friend or a last-minute weekend adventure. I need time to review menus or maps, and time to make sure I have on hand all of my medications, supplements, devices, and any other migraine-related needs. From the time I wake up to the time I go to sleep, I am assessing controllable triggers and doing a cost-benefit analysis of any activity. I was also careful to explain that so many of my triggers are unknown or out of my control.

… and that was just the first question. I spent the better part of the last three weeks going through these questions, answering honestly, and doing bits at a time so as not to get too overwhelmed. Now I wait to see what the next step brings. I’m thankful that I know others who have forged this path ahead of me and shared their knowledge and experience. I’m also very thankful that I have my family’s help and support while I wait out this lengthy process.

Five Stages of Migraine Grief

I just read a quote that really resonated with me.

“Pain is inevitable, suffering is optional.”

After some searching, it appears to be attributed to Haruki Murakami. It got me thinking about my current state of health and Elizabeth Kubler-Ross’ stages of grief which were based on her work with terminally ill patients. I know this isn’t an original blog post, but after I realized the other day how wild a ride – both physically and psychologically – the last year has been, I had to write it.

I realized this as I was painting my toenails and thinking about the last pedicure I got. It was just about year ago. I was still in Boston. I’d been trying to make plans with a close friend for a while and, of course, my migraines pre-empted a few dates. When we finally met up one Sunday for pedicures, I described to her how hard it had been keeping up with work full time. I had FMLA, but was considering, at my doctor’s recommendation, short-term disability leave.

Within six weeks of that pedicure date, I was taking leave and I never got back to working full time. For the past six months I haven’t worked at all.

(*Side note, pedicures are not a good idea for someone who has migraine and is scent sensitive! Lesson learned.)

My point is that the past year has not been anything like I would have imagined and as I think back, I now see I was going through my own stages of grief. No, my illness is not terminal, but it is chronic and there is no cure. It’s also considered as debilitating as dementia, quadriplegia and active psychosis.1 I’m not the first to recognize this, but it helped me finally come to the realization that because there is no cure, I have to accept my current life and learn to live it as best I can. That’s really hard. Not only is there grief in being ill, but illness has resulted in a whole host of losses that I have to come to terms with, from my job, to friends, to my independence. It’s this double layer of grief that’s so challenging.

A while back, I had a therapist who tried an approach called acceptance and commitment therapy (ACT). We didn’t get very far with it, so I won’t profess to understand the theory and I will admit to finding it hard to want to follow at the time. Mind you, this was eight months ago. Thinking of the stages of grief, I was only likely at anger and it felt like she was asking me to consider skipping straight to acceptance. I see the benefit now, but I wasn’t ready then. I guess I needed to work through some stuff first.

Anyway, as I understood the idea of ACT, those of us with chronic conditions have one level of suffering: our illness. However, to try and fight against it, deny it, or be angry about it just adds a second level of suffering that is unnecessary. I understood that, but I didn’t know how to not “fight” my disease. How do you not fight to get rid of a thing that is all encompassing and ever present, and ultimately, the root of the suffering to begin with? It would feel like giving in and maybe giving up too soon. What if I gave up and the next treatment worked? But that’s the fine line. You don’t necessarily give up trying to get healthy. I guess you just give up the fight against being sick. It’s a really, really fine line.

This is how I journeyed through the stages.

Denial

For me, it wasn’t so much denial. I would define that as knowing something, but ignoring it forcefully. Instead, I didn’t really notice warning signs. I knew my headaches were becoming more frequent, but I didn’t know there was such a thing as chronic migraine – daily, unrelenting pain, nausea, and other symptoms and side effects. Even if I had known, I think I was so stuck in my anxiety that I wouldn’t have recognized that my headaches were turning into chronic migraine. I certainly had no idea that this would be a chronic pain condition that would be so very, very difficult to undo.

Anger

Around a year after my headaches began worsening I stopped having any pain-free days. That was probably when I realized migraine was changing my life dramatically. It was summer, but I couldn’t enjoy it. I only made it to our friends’ cabin for one quick overnight marred by a doozy migraine. I didn’t get in my kayak once. I had just finished my PhD program and hated that I was missing out on summer fun.

By fall, I had to take short-term leave from work. I was having week-long flares that I couldn’t tame. My mother was having to drive down to Boston to help me catch up on normal chores as well as make sure I could eat. I got angry at this point. Unfortunately and unfairly, I often took it out on people trying to help me. I still struggle with this. I have lost my career, my ability to be spontaneous, I’ve lost weight and my hair, I can’t eat what I want, go to a movie, or even go out with friends without triggering a migraine. Anger seems inevitable.

Bargaining

I do a lot of bargaining in my head. Some might say I’m doing it with a higher power, but I just make a lot of deals with the universe. For example: “If this new medication works, but it makes my hair fall out, that’s fine. I’ll live with being bald, but otherwise healthy.” The truth is, nothing has helped and I’m still losing my hair, not sleeping, having muscle twitches, and a host of other side effects. Apparently, my bargains aren’t good enough. And I really don’t want to have to make these kinds of bargains.

Depression

Like anger, how do you not go through depression when you have a chronic illness that steals so much away from you? My depression is tied very closely to my pain levels. In a bad flare, a bad week, a bad month, my mood will suffer. In those rare, brief respites from migraine, my mood will lift, but the anxiety is always present. I go to counseling and I’ve tried medications. There really shouldn’t be any shame or stigma in needing either one. Happiness and sadness aren’t always choices. Sometimes it is biological.

Acceptance

I still struggle with what it means to accept my illness, but also want desperately to get better. I know I’m only in the earliest stages of acceptance. I’m no longer in denial (i.e., ignorance), but between stops at acceptance, I also revisit the other stages.

Keeping in mind that I haven’t mastered acceptance and that pain is my most pervasive symptom, my new motto is:

This is my pain today. I will do what I can to diminish it. 

If I can’t, I will live my day as well as possible.

 

Some light reading, then some nerdy journal abstracts:

As I mentioned, coming to accept migraine as part of life for a person with the chronic form of the disease is not an original concept. Others have written about it, too. It is even something being studied as a sort of coping mechanism for living better with chronic migraine.

https://migraine.com/blog/acceptance-not-resignation/

https://migraine.com/blog/on-acceptance-productivity-and-pain/

https://migraine.com/blog/accepting-limitations-can-ease-emotional-pain/

http://www.thedailyheadache.com/2008/02/making-peace-with-pain.html

https://electricliterature.com/10-stories-for-the-5-stages-of-grief-fc96fdfba24b 

http://onlinelibrary.wiley.com/doi/10.1111/head.13058/full

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990866/

http://journals.sagepub.com/doi/abs/10.1177/0333102415590238

Edit (10/9/17): https://migraineagain.com/coping-with-chronic-illness/

Note: I talk about my headaches a lot in this post because that was how my migraine disease shifted from episodic to chronic, poorly controlled daily headaches that were more and more often becoming full-blown migraines. Now, I talk about having migraine. One symptom of my migraine disease is headache. I just wanted to make it clear why I chose the wording I did in this piece.

1Shapiro RE & Goadsby PJ (2007). The long drought: the dearth of public funding for headache research. Cephalalgia. 27(9):991-4.

Bored on the Fourth of July

Do you get that same feeling I do when you are preparing for a trip? It’s that feeling of anticipation. For me it starts weeks in advance with the mental countdown. Then, as it gets closer, I start a “to pack” list. I make “to do” lists all the time, but my favorites are in preparation of trips. Once I’m within a week or so of departure, I will start piling stuff in a corner of my bedroom. The clothes and bathing suit I need to pack. Sunscreen. My life jacket and kayak paddles. The books I have been wanting to read. If you’re like me and the trip includes seeing friends, family, or friends who might as well be family, then you start to trade little emails or messages on social media: “These look yummy for the lake!” “I want to go to this bar!”

My favorite vacation is one I’ve taken almost every year with my family since I was about 12. My parents’ college friends have a camp (a.k.a., a cabin) on a small lake near the northern border of the Adirondack Park. They also have two daughters who I grew up with. We’re practically family. I think I went to “the lake” every summer from about 6th grade until sometime after college.

There were a lot of great memories made during those trips. My favorites are of the weeks spent around the Fourth of July. See, my parents’ college friends are my brother’s godparents. The husband also shares the same birthday as my brother (July 6th), so there was a stretch of years where we all spent the Fourth together. We crowded into camp, celebrated birthdays with too much dessert, and had cocktails on the dock while we got sunburned. No television and, even now, no cell service.

That was all before chronic migraine. The problem of living with chronic migraine is how small it seems to make my world. When you have migraine, doctors often teach you to learn and avoid your triggers. However, avoiding those triggers seems to have significantly shrunk my world lately. If you read my previous blog entry, you probably got a sense of the potential triggers I consider each day. Some of the biggest are what and when I eat, how much or how well I sleep, and the weather.

Travelling can make avoiding these triggers more difficult. It can also bring a whole slew of other triggers that I’m not used to managing in my well-controlled, normal life. That well-controlled, normal life is really important for my sensitive brain. It needs consistency. It hates surprises. So travel can also induce new anxieties like: What if I run out of my meds? What if I need to go to the ER? What if I’m sick the whole time and can’t enjoy the vacation once I get there?

This year, I’m grateful for family friends who invited us to spend the Fourth with them. I actually had a good day, probably my best of the whole month. It was like my brain knew it was my favorite holiday. My pain was low. I ate relatively normal food. I got out in their kayak for a short paddle. Saw friends I hadn’t seen in years. I felt normal.

But my family also had other plans around the Fourth. My parents made a quick trip to the lake. My brother and his family spent the week at another lake. So, I also watched as rest of my family wrote their “to-pack” lists, made their piles to take, and then departed. This week they are again planning trips: my parents want to go back for a longer stay at the lake while my brother and his family plan a trip out west. I’d be lying if I said I wasn’t jealous. I am. Very much.

I know that practicing trigger avoidance presents a fine line. It’s good practice to a point, but then becomes counterproductive. I start to track everything which raises my anxiety, but more problematic, I just start to avoid everything. It also puts an unfair share of the disease blame on me. I can only do so much to avoid triggers and, honestly, I don’t think I can do very much. Triggers are not the cause of my migraines. After all, migraine is a neurological disease.

So, I’m trying to figure out my symptom (mainly pain) tolerance level at this point. I’m trying to figure how many triggers can stack before I tip into full blown migraine territory – again, not always within my control. I’m trying to figure out how to live a life with this as my baseline. I’m trying to remember that the worst-case scenario is also probably the least likely to happen.

When I was finishing my PhD and my headaches had not yet fully progressed to chronic, I was planning a trip to Scotland. It had only gotten as far as a Google map of the sights I planned to see, but I had that familiar excitement building in the pit of my stomach. I’m trying to figure out if I can make my world a little bigger. Maybe not Scotland bigger (yet), but I mean, if I’m going to feel awful, might I not as well feel awful somewhere else?

Tell me, how do you manage your symptoms while travelling? I’d love any advice!

Introductions

I have this fantasy. In it, I’m able to clone myself and every time a challenging decision comes along, one of my selves picks one option and the other self picks the other option. They continue on and, eventually, find out which decision was better. Can you tell I am the indecisive type? I’m also a trained researcher. I research everything, from what car to buy to what shampoo. Now try combining indecisiveness and a compulsive need to research. Good times.

I like to call my imaginary, other self my personal counterfactual. Never have I wanted Counterfactual Me to be real more than since my migraines turned chronic. Two years ago I was a 30-something (still am) living in Boston. I was working almost full time while also working on my PhD. Between the summer of 2015 and winter of 2016, a lot of very stressful events happened at once. The effects were cumulative on my health and by the spring, my occasional (episodic) migraines were becoming more frequent and I was battling a headache every day. Since then, my migraines have worsened to the point that I left my job and moved back to my hometown in Vermont.

I did finish my PhD, though! My degree is in research and evaluation. In my former life, I evaluated the effectiveness of educational programs and policies. In my current life, I like to say that I am my own research project. I’m constantly faced with decisions as I live my life with migraine. Before I eat breakfast, I’ve made more mental calculations about what will or won’t make my symptoms better or worse than you can imagine.

That brings me to the concept of triggers and treatments. I am constantly faced with exposure to a possible trigger or treatment. I used to know my triggers. I had a handful. I would do my best to avoid the avoidable ones and prepare the unavoidable. And I basically followed the same treatments for 20 years. For the past year, I have always had some level of pain. [That is why I now say I have migraine instead of I get migraines.] Managing triggers and making decisions about treatments has become a full-time, but poorly-funded study.

That is where Counterfactual Me would be amazing. In research, we often want to know if something works. Ideally, we’d have two identical people; I mean, literally cloning the same people. One group – or person –  would be exposed the trigger or treatment and the other wouldn’t. Then you’d measure an outcome for both and compare. The problem is that we can’t clone people or groups. The counterfactual (a.k.a. control) group only exists in theory. I wish for Counterfactual Me all the time. She would be exposed to the possible trigger or try the new treatment and I would go about my “business-as-usual. Then we’d see who felt better afterwards and decide which option is best. The most frustrating thing about chronic migraine is I have to make what feels like a MILLION decisions every day without Counterfactual Me Each decision feels like it’s as critical as the next in terms of whether it will exacerbate my symptoms and I don’t always have a lot of data to draw on.

Here’s a taste of my thoughts in a day.

Food. I never had food triggers when my migraines were episodic. I needed to avoid certain foods because of another chronic condition, but none triggered my migraine. I still don’t know if I have food triggers, but I’ve gone on a strict elimination diet to see if anything is contributing to my migraine symptoms. It’s not perfect science, so I constantly look things up to see if they are “safe.” If food lists disagree or I can’t find a specific food on any list, then it becomes a roll of the dice: Do I eat this pepper, strawberry, spinach, salmon, etc. and possibly worsen my symptoms? The most aggravating thing is that food triggers can kick in anywhere from 1-72 hours after exposure and since I have pain that is constantly fluctuating, I can almost never find a pattern that is clearly attributable to a specific food. I’m at the point where I’m grumpy and just want to eat pizza. And cake. Oh, and some pad Thai.

Activities. This can be anything from going shopping, to going to my nephew’s baseball game, to taking a walk or kayaking. Sometimes I just plain feel awful and I’m not leaving the house or exercising. Other days, I’m passable for human and should do all those things, but what if I do and it triggers pain? What I’ve learned recently is that low-impact activity like a walk or short paddle won’t make my symptoms worse if I’m having a decent day. That’s helped me gain a little confidence back. I just don’t get enough decent days.

Treatments & Insurance. This one is probably the most anxiety inducing and deserves a blog (or blogs) of its own. In short, the past few months brought new doctors to my treatment team. That has meant revisiting some of the same treatments my last doctor tried, stopping some ones that weren’t working, and starting some new ones. At each choice, though, it felt like I was always making the wrong decision. Do I do the standard Botox protocol because new doctor thinks old doctor’s protocol was wrong and new doctor’s will work better? Sure, but I win two months of free flu-like body aches! Do try an occipital nerve block two days before my PhD robing ceremony? Sure, but I end up with a raging migraine the day before which sends my anxiety through the roof! Do I take my abortive medication for the third time this week and risk getting into a rebound cycle or let the migraine continue to fester? Eh, does it really matter? My meds don’t work that well anyway and the pain always comes back. And the million dollar question (no joke), do I stay on my expensive COBRA health insurance or go on a state-subsidized plan that a bunch of men and women in Washington, DC are trying really hard to take away?

Now just expand this to decisions about whether the shower is too hot, the shampoo too smelly, the eggs too high histamine, what I’m going to wear (hat, sunglasses, both), if I’ll drive or call Uber (that was before, now it’s drive or call mom), whether I use heat or ice, if my pillow is too thick, … and on, and on.

It’s a really sh*tty way to live. It’s gotten old. So on some days, I eat something I probably shouldn’t. I never throw the rules out the window completely, but sometimes I’m just not as obsessively careful. On some days, I’ve started to just do stuff even though I hurt. That’s HARD! At a certain point, the pain isn’t ignorable. That point is something I’m exploring. For another post. Thanks for getting this far. I hope you’ll stick with me!