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Readers Speak: Reflections on Acceptance

Thank you for your thoughtful responses on acceptance! I’ve loved seeing your thoughts on a topic so close to my heart.

Only three of you balked at the idea of acceptance. For a couple of you, it was seen as as giving up the search for effective treatment.

Debbie: “I’m not there yet after 35 years. I can’t accept this is going to be the rest of my life! I search regularly and often for answers.”

Rowena: “I’m also going on 30 years with chronic migraine and I refuse to accept that this is how my life will always be.”

The third dissension also defined acceptance as resignation, but believes that her anger about migraine is what motivated her to find relief.

Bibi: “Not accepting my migraines—being innerly infuriated about how much good time was stolen from me made me motivated to change my lifestyle, diet and how I arrange my work life. It can be hard to accept once in a while, that I have to maintain this healthy lifestyle to stay free of the migraines for longer stretches. Like a diabetic I have to avoid things, else my body gets totally out of balance. This was hard to accept in the start, because I felt sorry for myself not being able to eat chocolate and a lot of other foods or to binge on computer watching at night. I try to treat myself with different ‘goodies’ now, when I want to have a good time now. Perhaps saints can accept the crippling, depressing attacks—I couldn’t.”

While our motivators may be different, I don’t think those of us who accept migraine are saints, nor do I believe we are complacent about the “crippling, depressing attacks.” In fact, everyone who wrote about embracing acceptance also said the continue to try to find relief, either by trying new treatments or managing triggers.

Newfoundlander: “I, too, have found that acceptance has been very important to my life quality. It has allowed me to grieve deeply about the life I don’t have. Unloading that heavy grief has lightened my emotional load, so life is better, even if the daily migraines are not. Simultaneously, I keep one foot in the door of hope. Hope for medical advancements, hope for new insights, hope for miracles for us all. That keeps me researching new possibilities. This balance of acceptance and hope is the best approach for me so far.”

Natali: “My most recent and potentially final liberation from the torment of migraines is exactly the same statement of acceptance. That doesn’t mean that I don’t (still!) try new medications or new treatments, it doesn’t mean that I have lost hope and have totally surrendered to a life of doom and gloom…. Acceptance of some short shifts the power back to the individual, you are no longer at the mercy of migraines…. [it] is not about defeat, pessimism or giving up. It is the start of rising from the ashes like a phoenix. It is a very spiritual and pragmatic means of reclaiming one’s own inner strength. I only wish, I had embraced the idea of ‘just accept it’ earlier in my life, to save myself endless days and nights of hellish desperation and pain.”

Lisa: “I think acceptance can easily live next to still being open to what may help…. Well maybe not easily. It takes work, but it’s possible.”

Dawn: “Yes. This has been the biggest help in my life. I still keep my ears open for ideas, but my life isn’t about the search anymore.”

Trish: “I agree that it is a healthy place for me to be when I can accept that I will always have migraines…. If there comes a day that a cure is found or something else works for me, hallelujah!!! Until then, I do have them, I just need to get on with this thing I call life.

Alicia gives a great example to differentiate acceptance from resignation:

“Eckhart Tolle in The Power of Now makes an important distinction between acceptance and resignation. Acceptance is where you are right now in the present moment. He gives an example of being stuck in the mud. If you’re stuck in the mud, you don’t necessarily have to like it or resign yourself to being stuck in the mud. But until you acknowledge that you’re stuck in the mud, you really can’t take necessary steps to get out of the mud. I think that I can accept that migraines are a part of my life. But I don’t necessarily resign myself to them. In the present moment, even if I have a migraine, I try to accept it and then do the necessary things I can do to abort it or prevent one in the future. Acceptance means not adding extra suffering to the physical pain of the migraine, such as resisting it with phrases such as “I wish this weren’t part of my life”,” this will be my life forever,”” I hate this pain, etc.” Changing the way I think about it has given me a lot of relief—after all the psychological aspect of having migraines can be just as devastating as the physical aspect.”

This response is in a similar vein to Acceptance, Not Resignation, a Migraine.com article I wrote, which several readers mentioned in their responses. I still agree with what I wrote several years ago:

I will never be migraine-free.

You may read that sentence as resignation or giving up on trying to improve my health. For me, it represents acceptance and it feels a world away from resignation.

I haven’t given up on finding an effective treatment—I’m always trying new options and constantly tweaking my regimen—but I have given up on the idea that my life can only be good if I’m migraine-free. And by accepting that I will always have migraine, I have lessened its control over me.

The reader who asked the question about Larissa’s comment emailed me after reading some of your responses. He said he thought that maybe the difference was semantic, so I pointed him to the Migraine.com article. After read it, he agreed that we were using different words to describe the same approach.

This is only a sampling of the responses. You can read more in the responses to On Accepting Migraine: Your Thoughts? and in the Facebook discussion.

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On Accepting Migraine: Your Thoughts?

“The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

That’s an excerpt from Larissa’s story of life with chronic migraine, which I shared last week. It registered with me as healthy statement of acceptance, but it didn’t sit right with a longtime reader. This reader’s unique insights and questions give me a different perspective and help me clarify my own thoughts, so his comments always catch my attention. He wrote:

Would be very interested what the readers thought of one statement of Larissa’s story: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life.”

Why accept she may have them rest of her life? She is around 30 years old—she will probably live another 60 years or so. With new medical advances and because she is so young—is that a helpful perspective moving further? (No offense to Larissa in my query.)

What I love about this reader is that he hasn’t discounted Larissa’s perspective even though it doesn’t sit right with him. He’s genuinely curious to know about her point of view and what other people think of it. So I’m passing his question on to you.

What do you think of the statement: “The most important thing I’ve done to deal with migraines emotionally is to accept that I have them and will for the rest of my life”? Do you think it is a helpful perspective or not? Do you agree with it and operate under the same principle or do you disagree?

Please leave a comment with your response. I’m looking forward to hearing what you think. I don’t want my thoughts to influence anyone’s response, so I’ll share my response a little later.

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Survival Mode

survival mode“I’m so sorry to read on your blog about the setbacks… It sounds like you’re in survival mode,” my friend J. texted after I posted Gastroenterologist, Adderall, and Migraine Status on Nov. 2.

I wonder how she got that. I’m doing pretty well right now, I thought. A week later: J. was totally right. I’m barely hanging on.

I’d written about how great I felt on Adderall and was hoping the effects of were not dwindling. They were. After a three-week energy boost, I returned to about 75% of where I was before the June infusions. This might seem disappointing, but it was a huge improvement. (The fatigue was so severe in August and September that I almost bought a walker to get around the house. Walking to the dining table took so much energy that I ate on the kitchen floor. I tripped over the slight ridge in a slate floor tile because couldn’t lift my foot high enough to clear it. I was living with crippling fatigue, yet the severity was still nearly unfathomable. So, even though I was no longer super-charged, I was pretty happy with the result.)

The Adderall also keeps my pain from getting above a 4 most of the time, even during a migraine attack. I’m grateful for this, but the pain has been the least of my migraine woes for the last couple years. (I never thought I’d say that!) Even with Adderall, I am severely fatigued during an attack. The fatigue continues to be even more disabling for me than pain at a 6 or below.

This up-and-down cycle of fatigue (plus cognitive dysfunction) has been going on since early November. I can’t predict how severe the migraine attack that follows eating will be, even when it’s a food I eat frequently. I never know how much energy I’ll have when I wake up or how long it will last. If a few good days follow tweaking something in my regimen (like increasing my magnesium or Adderall), I’ll think I’ve figured it out… then the benefits will dissipate.

I was eager to start a ketogenic diet January 3. It’s a high-fat, low-carb diet that’s used to treat epilepsy in children. (It’s also a trendy diet for body builders and people wanting to lose weight, but the version for epilepsy is a lot higher fat and lower carbohydrate.) The ketogenic diet seemed like a drastic change that could really make a difference. I saw no improvement. As January wore on, the migraine attacks seemed to get even worse. I was demoralized and panicked. The ketogenic diet was my trump card; I had no idea what to try next.

Ten days ago, the dietitian changed my meal plan to increase the fat and decrease the carbs. It’s brought some remarkable, but sporadic, improvement. I still have to take an Amerge and two Midrin every time I eat, but some days I barely notice the migraine at all. Then I’ll do something reckless, like try a vitamin D supplement(!), and have a downturn for several days. I’ve felt really good on about half of the past 10 days. Yet the progress feels substantial enough to have restored my hope.

I’m back to feeling like maybe the ketogenic diet will make a difference. The dietitian said it can take three months for the metabolism to fully shift, so I am hopeful more progress is ahead. Also, there’s room to increase the fat and decrease the carbs in my diet, which could mean even greater improvement. The fatigue is a drag and I wish I could think more clearly, but I’m optimistic that I’m on the right track.

The last year has frayed my optimism, leaving me with tatters that I feared could not be rewoven. Slowly, slowly I’m finding the threads and knitting them back together. I can’t say I’m out of survival mode, but I no longer feel like I’m in constant crisis. With my hope and optimism returning, I feel more able to cope with the setbacks that are sure to come.

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Chronic Pain Has Many Faces: 2016 Calendar

calendarEveryone who lives with chronic pain could use a daily reminder of our strength and courage. Anna Eidt, who blogs about migraine at Brain Storm and writes for Migraine.com, and her friend Jamie Ashforth have created a beautiful 2016 art calendar to do just that. Anna wrote the text and Jamie painted watercolors in response to Anna’s words. The image in this post is a sneak peek of the calendar; you can see details in this PDF preview.

This beautiful calendar would make a great gift (to someone else or to yourself!). The calendar is available on Anna’s blog and in Jamie’s Etsy shop. You still have time to order for Christmas delivery!

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Losing Time to Migraine

How much more time will I lose to migraine?Last Tuesday

I turn 39 on the 28th. For the first time in my life, I’m not excited about my birthday. It’s not the typical existential dread of getting older. I like the wisdom that has come with age and am OK knowing that the remaining years in my life are dwindling. The distress comes from knowing that migraine will have an outsize role in determining how I spend those years.

I have been housebound for nearly two months. Confined to the couch, I have to wonder: Will I have another six months of this then get back on track with my dreams? Or will I spend another decade trying fruitless treatments while science catches up with my body?

Thinking of everything I’ve lost to chronic migraine—friends, work, school, hobbies, living in Seattle…—brings me to tears. But only one loss is a fresh bleeding wound whenever I think of it. Time. Time is the only thing I can never regain, repair, or replace. Approaching my birthday prone on the couch, I ask: How much more time will I lose to migraine?

There is so much I want to do with my life. Writing to do, family to spend time with, friends to see and make, countries to travel to, bands to dance to. I don’t waste any minute of my time when I feel good (or even halfway decent). On those days, I go nonstop and crawl into bed at night satisfied and happy that I’m tired from exertion, not migraine. But those hours don’t add up to enough for me reach my goals.

In January, I finally believed that the improvement I experienced in 2014 was real and lasting. I finally believed that I had enough energy and cognitive ability to bring the book I have in mind to fruition. In March, that belief was shattered. I know the book will happen, but not until migraine stops absorbing all my physical and mental energy. Will that be next year? Five years from now? 20? I have work to do. When will I get to do it?

Last Wednesday

The 17-year-old main character in the novel I’m reading is trying to discern the meaning of a poem her grandfather shared with her before his death. It’s a future society and the poem is illicit, so Google is of no help. Over and over, she puzzles through these lines:

Do not go gentle into that good night
Rage, rage against the dying of the light

It’s a Dylan Thomas poem that’s probably familiar to you. It was to me, but the words hit me harder than they ever have before. As the main character begins to understand what the poem means to her, I considered what it means in my life.

My 30s are nearly over and I don’t know how much more time I’ll lose to migraine. Now matter the number, the one certainty is that I will spend that time raging against the dying of the light. I’m still breathing, therefore I’m still trying to get better. I will not go gently. I cannot. I love life too much to give up.