By

Acceptance, My Best Treatment

This flowed out of Don’t Give Up on Finding a Treatment. It’s the most effective of all the headache treatments I’ve tried — and the hardest to get.

You may be surprised to learn I feel I’ve had success in treating my headaches. I still have pain, mental fogginess, a super sniffer and many other largely unknown symptoms of migraine. Yet I’m full of hope.

To me, hope isn’t about finding a magic bullet. It’s knowing that I can have a full and joyous life despite my illness. Something that I wrote when I first started blogging explains this idea well:

The Anatomy of Hope, by Dr. Jerome Groopman, draws a line between hope and positive thinking. Groopman, an oncologist and hematologist, has treated patients with life-threatening illness for 30 years, many of whom have survived against the odds. The definition of hope that he offers is that “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

The better future he mentions does not require living without disease. Yes, people often overcome their diseases or are able to live without pain. But the better future Groopman describes can also be learning to live joyously even with debility.

Two years ago I didn’t understand the distinction. I am thankful for the time I spent in denial, but am even more grateful that my current version of being positive is rooted in reality. A reality that means I spend more days than I want in bed, but that I’m not emotionally miserable on those days.

I’m not saying that you just have to be positive and your headaches will go away. Nor do I think you can simply decide to accept your fate and go from there. Like all things in life, it’s a process. There’s no timeline to follow, but you will notice that you’ve began to have more acceptance than you once did.

If you want some help along the way, check out The Chronic Illness Workbook and Chronic Illness and the Twelve Steps. Therapists who specialize in chronic illness can also be tremendous help.

By

Afterglow Diminished

The glow of Tuesday’s wonderful acupuncture session dimmed after yesterday’s appointment. I went in feeling great, walked out feeling OK but a little foggy, and two hours later was hit with a bad headache. Even worse, I was visited by another migraine in the night and it was accompanied by dizziness.

It’s not like I expected acupuncture to be a miracle treatment (’cause I no longer believe in those), but it was still a letdown. It sucks that what looked so promising on Tuesday was such a disappointment on Wednesday.

It’s funny though. I am disappointed, but not devastated. I’ve accepted that I may never have a headache-free day again. I go into any treatment knowing that the odds are against me. (Don’t be too quick to label me pessimistic. It’s that I recognize the limitations of treatments and accept whatever the outcome may be. Really.) My hopes weren’t too high to begin with.

But now that I’ve glimpsed my former energetic, clear-thinking self, I want her back. Having the goal just out of reach and it’s success out of my control is frustrating. It’s exciting too because now I know that my body still holds the possibility.

By

Optimism’s Health Benefits

Well-intentioned yet completely misguided friends, family members, and even strangers often say that all it takes to get rid of your headaches is to “think positive.” You won’t be surprised to learn that this infuriates me. Headaches are a physiological illness that can’t be whisked away with happy thoughts.

Yet there’s evidence that the outcome of being optimistic about your diagnosis and treatment is better than if you are pessimistic. Optimism isn’t about thinking positive or pretending the illness doesn’t exist. Instead, it’s someone who “takes action through health-enhancing behaviors, even under very stressful circumstances. . . . Pessimists may create more distress for themselves by distorting, denying and avoiding the situation.”

This information is from Accentuate the Positive: How Optimism Can Boost Your Health, an article in the the National Women’s Health Resource Center‘s October newsletter. The article goes beyond telling you to be an optimistic to recommendations for making changes in your own life. Mainly it’s a matter of changing the way you cope so that you problem-solve instead of shutting down in the face of illness.

By

Good Stuff From ChronicBabe

ChronicBabe is always an awesome site; recently it’s been overflowing with terrific articles and links.

Illness and Empathy for Others
In her latest contribution to ChronicBabe, Laurie Edwards (whose articles I love) describes how her illness influences her interactions with loved ones when they have a passing illness — both positively and negatively.

Work and Illness
Lily Thomas, who has CDH and migraine, writes about working with people who don’t really understand what your illness is like. And her experience sorting it out when her boss was the one who didn’t understand.

Emotions in Patient-Doctor Communication
“Emotional patients” have trouble remembering what their doctors tell them, according to findings of a recent study. The “emotional” participants in the study latched onto frightening or worrying information.

Keeping Cool
Heat and dehydration are big headache triggers. ChronicBabe gave this link for ways to cool off.

Acceptance
In an essay on NPR‘s This I Believe, Kay Redfield Jamison writes about accepting the role of bipolar disorder in her life: “It is not a gentle or easy disease. And, yet, from it I have come to see how important a certain restlessness and discontent can be in one’s life; how important the jagged edges and pain can be in determining the course and force of one’s life.”

Invisible Chronic Illness
Next week is National Invisible Chronic Illness Awareness Week. During the week, people who live with invisible illnesses are encouraged to educate the “general public, churches, healthcare professionals and government officials” about the frustrations of having an illness that others can’t see.

Thanks to Jenni and all ChronicBabe contributors for sharing coping strategies and great resources.

By

Migraine Design Project, Questions 4 & 5

Here’s the third installment of my answers to Molly’s questions. Molly has already heard from many of you and is thankful for your honest, unveiled answers to some tough questions. I’m sure she would appreciate any more answers that trickle in. To help with the design project, send your answers to her at mmcgee@risd.edu. (Does this read like an NPR fund drive script or is it just me?)

4. Are your family and friends or coworkers understanding of your pain?

Mostly yes.

My headaches became debilitating while I was in grad school and teaching. I often had to have friends cover for me. One friend in particular took many of my classes. He was very helpful and understanding at first, but I depended on him way too much. We’re not friends anymore. Most of my students were understanding, others weren’t. It mostly broke down by the feel of the class. The least understanding bunch was the semester when I missed three out of the four first classes. I never felt like I established a good relationship with them and they challenged me verbally more than any other class.

I worked at the place I wound up at after grad school for three years. The first year and a half I managed to hide my debility and work my butt off. Things went way downhill after that. Most of my co-workers were understanding and personally supportive, but I know that my missed deadlines and many absences were frustrating for others.

My friends and family are wonderful. Before I recognized how severely my health affected me, I lost several friendships because of my “flakiness.” I couldn’t explain to them what was going on; I didn’t know myself. Other relationships have shaken out over time, but growing up has contributed to ending some friendships. Now I’m surrounded by people who believe and support me. And it’s terrific.

5. Finally, write anything you think is important. What is the most important thing you want to express about migraines?

Headache isn’t curable. It’s treatable and symptoms can be minimized or even disappear for many patients, but even these people still have the underlying disease. As someone who falls into the not-really-treatable category, the most important part of my treatment has been accepting that this disease isn’t going away. After many years of fighting nonstop, I’ve accepted that I will probably never have a pain-free day in my life. As much as this may seem like resignation, it’s not. The more that I accept migraine and CDH as part of my life, the less of a hold they have on me.

Migraine and CDH (at least in CDH from transformed migraine) don’t just cause pain, but have a collection manifestations. These include odor hallucinations, weakness or heaviness in limbs on one side of body, numbness or tingling of face, confusion, disorientation, difficulty finding words, problems understanding spoken or written language, pale skin, frequent urination, irritability, excitability, depression, nervousness, difficulty concentrating, nasal congestion, runny nose… And this is only a partial list!

Other headache bloggers who have responded to the questions are Tracy of Moogle’s Thoughts and Angel from Give Me Something to Sing About.