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The Eternal Asterisk of Chronic Illness

“Join us for dinner, I feel like cooking.”*
“Yes, get me a ticket for the baseball game.”*
“See you at yoga tomorrow.”*
*unless I’m too pained, dizzy or nauseated to do so

For about 10 years, this was the pattern whenever I’d make plans: My excitement would build as the dinner/concert/play/party approached. I’d spend the day resting, hoping to build energy reserves, and give myself a couple hours to shower and dress. The migraine pain/exhaustion/dizziness/nausea would persist despite my best efforts to supplicate it. I’d push myself and become distressed, and worry and panic would fuel the migraine. Angry, I’d crawl into bed (or sometimes collapse on the floor) and ask Hart to call our friends to cancel.

After years of disappointments — and lost friendships — from last-minute cancellations, I stopped making plans. The pattern was just too painful to repeat. I withdrew further into the isolation of chronic illness, dragging my husband in with me.

Moving back to Phoenix, where my friendships are long-established, I began making plans again, knowing my friends would understand if I had to cancel and that, if we had couple plans, they’d welcome Hart even if I couldn’t come. So now I make plans with an asterisk. I’ll come to your party, meet you for tea, go to a mini high school reunion, as long as I’m up for it. I still don’t like rescheduling and am reluctant to buy tickets for events that I’m not sure I can make, but I am no longer ashamed or embarrassed when I have to stay home.

Shame or guilt were only part of the problem. If I couldn’t go out, I felt like I was letting migraine win. Like my default mode was healthy and deviance was an anomaly. Truth is, my default mode is migraine (“chronic” might have been the first clue). I’d been too stubborn to see and too ashamed to admit that I was too sick to live a “normal” life. Coping with chronic illness isn’t a matter of winning or losing, but of being honest with myself. And that may be the biggest challenge of all.

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You’re Doing Everything Right

“You’re doing everything right,” a friend wrote to me two years ago when my migraines were at their very worst. That sentenced has sustained me through many difficult patches. It has been so helpful for me that I want to tell you that you, too, are doing everything right.

The next 10 days afford many opportunities to talk with (hopefully) well-intentioned friends, family or co-workers who will tell you about the person they know whose horrible migraines were cured with a sun lamp/energy cleansing/daily enema. Maybe you’ll be lucky enough to encounter someone who tells you that all you need to do is think positive thoughts and your health will improve. Before you explode, try to take some deep breaths and remind yourself that this person probably means well but doesn’t understand the magnitude of your illness.

Then, instead of jumping on the guilt and self-doubt train that awaits folks with chronic illness (“I’m letting people down” or “I need to seek new treatments more aggressively”), remember that you are doing everything right. That’s really the only truth that matters. Whether or not you live up to someone else’s judgments, real or perceived, is irrelevant. Maybe you cancel plans or show up at the party without the requested potluck dish. So what. As long as you get up every day and try to live your life around your illness, you are doing everything just right.

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Remembering Why I Blog

My mood lifted almost immediately after I posted on Monday. When I sat down to write, I had no idea what was going to come out. The ideas that flowed through my fingers surprised me. And released the reminders of why blogging has been a crucial “treatment” for my migraine and chronic daily headache.

While writing, I work through what’s bothering me and discover feelings I didn’t know I had. I speak candidly without worrying you will be distressed by what you read (as I fear my friends and family will be). In fact, there’s a good chance sharing my grief or guilt or pain will somehow help in your journey and provide comfort. I also don’t have to pretend to be someone I’m not. You come here knowing I have a chronic illness. You don’t remember who I was before I got sick, so you don’t miss who I used to be. Nor will I scare you off by talking about my struggles, as I feel I do many new people.

Whenever I talk about the blog, I focus on helping other people who are in a similar situation. I say the relief and support I get from it are lovely, but I’m really doing it for the readers. Now I see I am the true beneficiary. Even though I have been absent much of the last two years, this community has been crucial in my emotional healing. Thank you.

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The Trade Off: A Scheduled Migraine Day

I drove more than three hours to my sister’s house yesterday so I could surprise my nephew on his 10th birthday. I had to be home for plumbers this morning, so I could only stay for a few hours. Cramming nearly seven hours of driving, lots of caffeine and bad-for-me food into 13 hours ensured I’d be sick today. I went anyway.

After years of constantly overdoing it and constantly being sick, I learned I become terribly ill when I push myself too much. Now I know to hold back; sometimes I think too well. I’m stuck at home with migraines so often. There’s only so much time I can give up because one might come along.

Last year, a friend taught me that I don’t have to shirk anything that might make me sick — even if it is something that I’m absolutely positive will result in at least a day in bed. She showed me I can choose certain times to push myself without doing it every single day. The trick is knowing one day of indulgence can lead to one (or more) days of feeling awful.

When planning yesterday’s trip, I factored in today as a sick day. Other than letting the plumbers in, I made no appointments or plans. I stocked up on easy food and checked out a good audiobook. By intentionally making a trade off, I feel no guilt.

I know I should never feel guilty for being sick, but I rarely do what I should. Today I can see what a reprieve it is to just let myself be as I need to be.

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Guilt: How Do Family & Friends Really Feel About Sick Loved Ones?

We feel guilty because our partners, parents, kids or friends take care of us when we’re sick. Not only that, they have to pick up the slack of the of chores, errands and responsibilities that we couldn’t take care of.

We feel guilty because we call in sick to work, cancel plans with friends, sleep too much, tell everyone around us to be quiet, have dust bunnies under our beds and in the corners and even in the middle of the dining room table.

We feel guilty because we don’t go to our kids’ soccer games, return phone calls, stop to chat with neighbors, enjoy the sunshine/snow/rain, take the dog for a walk, cook dinner.

I wrote that last September and was overwhelmed by the responses from people who also feel guilty for letting friends, families and coworkers down. Lots of us obsess about this, but have you ever asked them if they truly feel let down? I haven’t.

The teacher of my meditation class told stories of previous class members who were wracked with guilt and worried that their families and friends were disappointed in them. Actually asking the families and friends revealed an entirely different truth: They did not feel let down, but were sad to see their loved ones suffering. They all felt helpless and wished they could do more for the person with illness.

So the guilt is on both sides. If only we could figure out how to meet each other in the middle. Have you asked your loved ones what your illness is like for them? Let us know in a comment on this post or on the online support group and forum.