Living With Chronic Migraine Is a Full-Time, Lifelong Job
We should get a paycheck to live and cope with migraine.
Posted Jan 12, 2021
See if any of this sounds familiar…
I’ve been in an intractable migraine cycle for six days now. I’m going through the fear I always have when it goes on this long and I’ve “thrown everything at it:”
When will it end?
What’s going to make it lift away?
Will it end?
Rationally, I may know it always eventually does, but in the middle of it, emotions take over.
Of course, despite the headache that is pounding over my right eye and the pain deep into the right side of my neck, I have to continue to function fairly normally. After all, at this point, the migraine hasn’t been severe enough for me to stay in bed. Not only that, lying down makes it worse. This is what I call a "functional" migraine.
Therefore, I try to do as much as I can: I work for an hour at a time developing my syllabi for spring semester courses and try to complete some basic tasks/chores. I take and make all the phone calls I possibly can, though I don’t feel like talking to anyone.
I can’t really concentrate to read or stay still long enough to watch television. My mood is all over the place, from depressed, to teary, to rageful. I am exhausted, want relief from pain, and want to feel less lonely in all of it.
I walk around with tightness around my scalp and my forehead numb (maybe from Botox or just the migraine). The fog leaves blanks in my speech, with sometimes the wrong word coming out. This morning, I stood still for many seconds before coming up with the word "blanket" and then used “plate” for “refrigerator” a couple of hours later.
My anxiety is much worse; I shake inside myself and am restless, with no way to get away from it.
Yesterday, when the pain was more severe than now, I went to the pharmacy, only to struggle with the tech about prescriptions—not giving me enough Ubrevly, being told they had not received authorization from my doctor yet for my Medrol dose pack, pleading with them to let me have enough medication to get through the weekend. All, only to walk away from the window with more problems to solve on Monday but no help for the weekend.
I’ve gone to my weekly physical therapy appointment for work on my neck, which usually helps, have taken all the rescue drugs I have, have stayed hydrated, and have tried to stay on my sleep schedule—but nothing is working; the cycle won't break.
On Monday, I will likely get the pharmacy problems straightened out and then will go to the Migraine Clinic (infusion center) for several hours, and then hope.
Those who know me well, care for and support me, ask every few hours how the migraine is. Believe me, they’ll know when it’s lifted. This is hard on them, too, because when in this state, I am the migraine, and the migraine is me.
I can say it’s only part of me, but it controls everything I do and don’t do. It alters my personality, takes away choices and freedoms, and steals life from me. I’m existing, not living in these times.
How can these changes not dramatically affect my loved ones? I’m not as present in so many ways: I can’t do so many things around the house; I can’t even bend down for any reason (not even to get my dog’s ball for her, and she looks at me with her head tilted, not understanding).
I can’t Zoom with friends, as I just don’t have the energy or focus for it. I don’t drive unless I really need to, since I need to focus so sharply on the basics— making sure I don’t miss exits and forget where I’m headed.
Right now, living with it is a full-time job. I must spend my days and nights doing all I can to accommodate it, must utilize all my resources to tend to it— taking my medications, avoiding triggers, wait for my scheduled Botox, see my physical therapist and chiropractor, and put in the time…wait and hope — hope I’ll wake up tomorrow with that exhilarating lift, a spectacular vacation from this job.
As I finish writing, I have just learned from my doctor that insurance companies will now cover only 8, yes 8, Ubrelvy a month. That’s down from 16 a month ago. I am deflated.
This blog post isn’t about advice for living with migraine; it’s more about reminding you that you are not alone. If you (or your loved one) lives with migraine, you have an additional full-time job in your life.
Gail Mazur, in her poem “Dear Migraine,” reflects on the lifelong relationship she has had with migraine:
We have spent the best years of my life intertwined: wherever I land
you entrap me... (lines 20-21).
May you find comfort for yourself if you, too, are suffering. May you discover empathy, if you know someone who is.
Mazur, Gail. "Dear Migraine" in So Much More than a Headache: Understanding Migraine through Literature." Kent, Kent State University Press: 2020. 151.