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!