Day 27: Challenges & Victories
My 5 Challenges of Migraine Disease
- Accepting my “fate”: One of the hardest parts of having a chronic illness is accepting that life will be different.
I had plans for myself; we all do. I never realized that migraines – a condition that, “got in my way” once in a while when I was younger – would take over in such a big way in my middle age. Its funny how abruptly my plans/goals change when I have those chronic days that sometimes turn into weeks; when the pain is so distinct and enveloping that I can only wish for just a few hours of “normalcy”. In these moments, all I can do is beg and pray for any relief. College and a career seem millions of miles away, and not nearly so important.
- Staying Courageous: Maintaining a brave spirit in the face of pain that often becomes unbearable is hard work at best.
If migraine disease only meant excruciating pain, that would be enough; but it does not: migraine disease is so much more than just pain. Along with the myriad of associative symptoms: dizziness, nausea, vision issues, exhaustion, difficulty thinking, gastro distress, and more, migraine equals a life in which this suffering will never go away. Treatments abound, but they are NOT cures; suffering becomes part of a migraineur’s mere existence. Holding on to courage becomes essential, but its one of my most difficult and elusive mental acts of balance.
- Disregarding “Non-believers”: Stigma surrounding migraine disease is alive and well; owning my own power regardless of what others’ think, say, or don’t-say becomes all –important.
I have an especially hard time when something is said; a job is lost; my reputation is lost; or when anyone in general gives me that “look”. To suffer in a world where many people (and many professionals and doctors, too) equate migraine with, “just a bad headache” or “hysterical woman/hypochondriac syndrome”, horrifies me. It also brings to life in me an inconsolable fear; defiant anger; and a loss of my own power that takes tremendous amounts of energy to regain.
- Avoiding Worry & Fear: Misunderstanding that cannot be rectified; unbearable pain that will not abate; and worry surrounding the pain and how it will be treated creates a situation of almost unbearable worry and fear.
Attempting to avoid worry is another necessary task for me that is always “easier said than done”. I worry that my headaches may become so frequent or so extreme that no one will be able to help me; I worry that my life will be wasted, and everything I’ve ever dreamed of will disappear; and I worry that I will run out of triptans: my insurance allows only six of any triptan in a month. I average eight to twenty migraines every month, and my only relief is medicines that cost approximately $30.00 per pill. This fear that lives in my subconscious is real, and can only be quieted with my management and balance of courage. If the courage dissipates, the fear fills all the empty spaces.
- Disregarding Depression: Depression and hopelessness seem to have been invented by migraine disease. Holding on to happiness while in the grips of an unrelenting illness that no one seems to understand or care about becomes all-encompassing.
Many days, it is incredibly hard for me to remain positive and light. My “little victories” (thank you, WEGO) keep away the unmentionables under the bed (thank you, Stephen King – sorry, had to put this one in…), but depression is always ready to take me away. I’m sure that all chronic conditions share depression as a co-pilot, and migraine is no different. Maintaining sanity, and a reason to be here is another full-time job, and I work there every day.
For me, all the challenges that I face boil down to one truth: holding on to those “little victories”: the daily/weekly/expected pleasures that allow hope to live. This hope supports all the necessaries – Courage, Acceptance, Security, Happiness, and Self-Esteem. Without that hope, all else becomes loose sand gripped in a tiny fist.
My 5 Small Victories (“Migraine Defense Plan”)
- Enjoying my daily/weekly/routine “get-togethers” with my husband & daughters and my sweet pet-friends. I love knowing that I can look forward to my daily routines with my family. These “little things”, keep love, purpose and hope alive…
- A victory exists that I never knew “existed”; this is the help, camaraderie and support of others who are chronically ill. Until recently, I never really reached out to ask for support; I didn’t want to be one of the “sick” ones, but I am and I must. I’m at the beginning of this story, but I’ve found in these people another piece to my puzzle in accumulating and keeping all those necessities that a chronically ill person cannot live without. This is true hope, even in the face of paralyzing fear.
- My own health. I am grateful everyday that I have the good health I do. Although migraine attempts to gain control of me on an every-day basis, I am secure in the knowledge that my “other” parts are well and usable. I know enough to realize that any health can be fleeting. This allows me to be all the more grateful for the health and abilities I do have.
- My hobbies and my ability to enjoy them. (This “victory” is probably a subcategory of the former one above.) Migraine disease constantly reminds me of what I can’t do; hiking, writing/reading, learning/exploring, the arts/music and the fact that I can still enjoy them reminds me of all that I CAN DO. Being able to do these things invites strength; strength allows courage, and courage makes everything else possible. This is a Grand Victory.
- Finally, loving all those things that I love is a victory above all other victories. I am grateful that I’ve found these loves and desires. Many of them existed long before I got this sick; the fact that they remain is miraculous and keeps my hope well fed. Being able to enjoy these seemingly small tidbits of life reminds me that beauty exists. The ability to live this life is synchronicity in the midst of disorder; relief after the most horrendous pain; and life in death’s face. Just another small victory…