Living with a disability often means endless hours of disease management. There are doctor appointments, medications, special diets, triggers, and an ever-evolving list of limitations. When faced with more than one disease, as is often the case for migraineurs, keeping it all straight becomes a full time job. It’s easy to get so lost in sickness that we forget how to be healthy.
Isn’t being healthy the reason we do all of this?
Every appointment, treatment, and lifestyle change are all for one purpose. We’re pursuing the dream of more healthy days. So when a healthy day presents itself, how do we remember what to do without sacrificing all the hard work that created it? If it’s been awhile since having a healthy day, you might not recognize the signs at first. Even if you do notice, you might be skeptical. After all, these days don’t last, so there’s no point getting too excited about a single day. When a treatment does start to work and the healthy days begin to add up, our approach can change.
Forgetting what it’s like to be sick
It takes me about two weeks. Late in that second week, it will occur to me that I missed my typical weekly migraine. If one doesn’t appear within that week, I start to relax. It’s still a mixed response. The initial response is one of excited relief. Then I begin to wonder what made the difference and start to test my limits. Hesitantly I get out more, become more active, and generally behave a lot more like a healthy person.
Remembering our limits
That first migraine attack after a long break is usually met with resistance, sometimes even denial. I don’t want it to return. Healthy Me still has plans. There is still so much I want to experience. I’m not ready to be Migraine Me again. Yet migraine returns. With it, I return to a more cautious and measured outlook. It’s not like I’ve given up trying. It’s just that I am reminded I don’t get to live a carefree life. Please don’t misunderstand. Life with migraine is still happy and fulfilled. It’s just different than I planned. When I get a long break, I start to think that my old dreams might still be possible. Sometimes I forget that I still have Migraine. I let my guard down and dare to behave as though migraine isn’t coming back.
Healthy days don’t happen by accident.
They take work. Medical treatments can help, but I have work to do as well. I must maintain good sleep hygiene, stay hydrated, eat regular healthy meals, and manage my expectations if I am going to have more healthy days. My treatments, while effective, don’t replace a migraine-friendly lifestyle. When I first became chronic in 1999 I fought hard to regain what I thought I had lost. Yet I didn’t start to improve until I had a complete change of perspective. I thought, “What if I treated myself as though I were facing a serious, life-threatening illness?”
I laugh every time I think about it. After 25 years of migraine, I still didn’t think of it a “serious”, “chronic”, “incurable”, or any other adjective I now associate with Migraine. It was a nuisance, an interruption, an annoyance. I was almost 40 before I heard migraine referred to as a neurological disorder or understood that migraine is a disorder that is always present, even between headache attacks. Yet I committed to living the lifestyle of a sick person in the healthiest way possible. In addition to regular medical treatment, I ate wholesome foods, drank plenty of water, maintained healthy sleep habits, learned yoga, got regular massages, and acupuncture treatments. I treated my body kindly and cut myself slack on bad days.
It wasn’t easy to maintain long-term because no one else saw migraine as a good enough reason to make such drastic lifestyle choices. Even my own supportive family did not really understand. Without something to back up my gut instinct, gradually these healthy habits disappeared. It took about 10 years to stumble upon evidence that my instincts were right. Armed with scientific evidence to support my earlier choices, I renewed old habits. This time they stuck. My closest supporters began to understand why the changes were necessary and encouraged me to keep going. Gradually I have learned how to be healthy, with limits.
Healthy, with limits is ACCEPTANCE.
Acceptance that migraine is a serious medical condition
Commitment to permanent lifestyle changes
Communicating my limits and needs to others
Engaging with multiple healthcare providers
Patience with myself when symptoms interfere with plans
Teaching myself and others about migraine
Acknowledging how migraine impacts my loved ones
New ways of thinking and behaving
Changing my definition of success
Excellence, not perfection