By Kimberlee MacLean
I’m on a deserted island in a sea of deserted islands; my chronic condition is the sea that separates me from others. We all have made shift rafts that allow us to visit one another from time to time, but we always end up back on our spot of ground. Sometimes I visit someone with Lupus, or Fibromyalgia, or even someone who lives with the same condition I have: daily chronic migraine and I feel, for too brief moments, that someone else understands. I don’t have to educate or feel that niggling obligation to prove that, indeed, I face it every day; that I’m not faking it.
I’ve had a daily chronic migraine for eleven years. Although the chronic migraine condition is defined as lasting more than 15 days per month, I experience some level of pain every waking minute of every day. So do most of the people I know who have the same condition.
I’m sure I started my search for relief like many:
I wanted the magic pill. I had unquestioning faith in the medical community and thought that, surely, there was some way to fix this thing that had turned my world upside down. Then I discovered that medicine is as much art as science and that my condition, like so many, eludes effective long-term treatment.
So I turned to alternate therapies.
Everything from acupuncture to massage. From the power of positive thinking to elimination diets. From consistent sleep to exercise. From trigger point injections to radio nerve ablation. They, like the medications I’ve tried from western medicine, didn’t provide long-term effective relief.
It’s easy to get disheartened.
Even those of us who manage to hold onto hope on a regular basis, spend some time in the clutches of despair, wondering if we can keep going through the long days that will inevitably follow. So what does work? How do we move forward? How we do more than exist? How do we live?
Although there’s no magic pill or wand here either, I’ve found some practices that help and that, unlike some medications, continue to provide some benefit no matter the length of time I practice them.
Manage Your Health
My health is solely my responsibility.
I only see doctors who will work with me. A doctor who will partner with me, one who explains their suggestions and who listens to and answers my questions, one who will graciously accept me declining specific treatments for reasons I explain is the cornerstone of me effectively managing my health. Doctors that unilaterally make decisions regarding my medications, procedures, and treatment are immediately fired. Anything I put into my body and anything that is done to my body is ultimately my decision.
I research and read and learn.
I bring possibilities to my doctor as much as they present possible treatments to me. And I inform them of everything I try and its efficacy or lack thereof.
I am my own guinea pig.
There is little I won’t try if it’s low risk and, with the knowledge and help of my doctor, I can research and implement on my own. I’ve been a vegan and a vegetarian. I’ve practiced yoga. I’ve removed processed sugars from my diet. I’ve researched hormones, their impacts and ways to regulate them through diet and exercise, and implemented those dietary and exercise ideas. And I’ll continue to see what might work. Ensure that any changes you make or therapies you try is under the supervision of a doctor! Many practices can have effects on current medications and other therapies you may be undergoing as well as present health risks that only your doctor can help you understand.
Get An Extra Spoon
No matter what our circumstances: spouse, parent, employee, single, friend, lover, there are things that need to be done in life. Grocery shopping, or ordering food when cooking is entirely out of the question, but eating is possible. Cleaning so that there are times when we can actually see the floor. Laundry, bathing, brushing teeth. These things sound easy. But when getting out of bed is a feat of extraordinary fortitude, the multitude of tasks after that are simply impossible.
I used to spend my “good” days attending to all the things that don’t get done regularly, followed by falling exhausted into bed with hopes that tomorrow might bring another “good” day. Soon I found that all of my “good” days were spent doing things that had to be done. Certainly, it felt good that a few tasks were checked off the list, but the list never ends. Add to that exhaustion that inevitably followed the frenzy of activity. My cup was always empty; my spoons spent on either feeling awful or doing what had to be done.
Those of us managing a chronic condition feel like we need to do it all, and in a fraction of the time, it takes those without our particular challenges. I’ll let you in on an enormous secret: we don’t. We will not be bad spouses if we don’t get the house cleaned. We will not be bad employees if we miss work on occasion. We will not be bad friends if we can’t make a birthday party. Most importantly, we are not bad people because we aren’t able to function the way many others do.
It’s hard to believe; to convince ourselves that, indeed, we are worthy; that we are enough. We have those angels perched on our shoulders shaking their fingers at us. Well tell that angel something from me: go pound sand. Even better, tell that winged creature yourself. Really get into it! Get creative. Make up horrible names for the beastie. It feels fantastic.
You have permission to care for yourself. We can’t continue to spend spoons on the incessant “shoulds” of the world. Those actually cost more than one spoon. Try it out. Keep hold of that spoon for the day. And keep hold of another one the next day. Chose a different spoon one day for a week and see how you feel at the end of the week. Seriously, make a note of how you feel on Friday night or Sunday night or whatever night works. Then take that entire week and save spoons. Reassess at the end of seven days. Scan your body. Scan your mind. Only concentrate on that. See how you feel. If it works for you, keep it up.
I don’t mean this in the spiritual or prayer sense, but if that works for you, by all means, run with it. It makes more sense to me as a method to train the brain. In managing my condition, I’ve tried everything. Medication, exercise, supplements, nerve blocks, Botox, trigger point injections, and more dietary changes than I can count. And still, meditation is the single most effective thing I have found.I started it because I’d read studies that showed it helped with
I started it because I’d read studies that showed it helped with chronic pain. And, as I’ve repeated said, I’d stand on my head and sing The Star Spangled Banner if I thought that would provide a modicum of relief.
I, like many, get tied up in horrible thoughts. About how worthless I am because of the condition, how I’m incapable of living a fulfilled life, how awful a parent I am, how terrible a spouse, how I’m not capable of working consistently on anything, how I just can’t take it anymore. And it goes on. So, on top of pain (and nausea, and light/sound sensitivity, and cognitive issues), I can find myself panicky and miserable.But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel.
But, this is exactly what brain training helps with. If our thoughts run away with us, it’s our brain that’s at the wheel. This practice has offered up the ability to allow me to be human, and sometimes less than human. I can let myself, if not fold the towel and place it aside, throw it in and recognize the days that I need more self-care than to care for others. And it actually helps me think through ways to make that happen. It allows me to offer myself forgiveness and compassion for my weak moments, and to ask for help without self-recrimination. In a nutshell, it has offered me more freedom than I felt even before the daily chronic migraine struck.
It’s not perfect, and it took some practicing before I started to manifest forgiveness and compassion for myself. I still feel the pain (and nausea and light/sound sensitivity, and cognitive issues). But I have my life back. I can live joyfully when conditions are low enough without the thought that it will be short lived. I’ve traded in panic for peace, and terror for calm. Even in the midst of awful days, I’m still me, and I can actually see that there may be a good day on the horizon. It has allowed me to leave mere existence behind and live life more fully than I thought possible.
Kimberlee Maclean is a fellow Unchargeable who suffers from Chronic Migraine.