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Gratitude and Love Amidst the Pain

celebration-of-friendsTurning 40 has been unexpectedly difficult for me. It’s not aging so much, but the recognition that I have spent the last 15 years in service to migraine. While I don’t normally worry about the future, somehow moving to a new decade has me projecting the past 15 years onto the next. I’ve written more about my churning thoughts, but they don’t feel worth sharing. I don’t want to spend more time thinking about grief and fear right now. Because even though these days have been difficult, my heart is also swelling with gratitude.

A friend was over last night and she, knowing how much I love my birthday, asked what my plans are. I explained that it’s been tough making plans because I can’t celebrate with food (which is how I used to celebrate everything), the weather is still too hot to do anything outside, and I’ve been getting migraine attacks every time I’m indoors in a public space. That led into a conversation about how scared I am that my life will always revolve around my health, how I panic whenever my migraine pattern (and responsiveness to treatment) changes, and how tired I am of exerting so much effort just to remain barely functional. As I cried, so did she. When I told her I just want to eat cake for my birthday, she told me she wants that for me, too.

I’m always grateful for this friend, but the cake thing took it over the top. She knows how much food means to me and how momentous eating cake would be. It was a reminder that she always sees me for who I am and listens to what I have to say. She doesn’t have migraine, but she totally understands what I am going through.

Having a friend like this feels like such a gift, but this is just one story of one friend. She’s not all that different from the rest of my friends. They understand that when I talk about migraine, I’m telling them about my life, not complaining. They listen with concern and love. They also get that sometimes I don’t want to talk (or think) about migraine at all. They aren’t put out when I have to reschedule or when I retreat from the world for months at a time. They see who I am underneath migraine and recognize how hard I try to get better. They love me.

I’m turning 40 after a very difficult year with my health. I am sad about the past and fearful of the future. I am also amazed by the beauty and joy in my life. I have the support of so many amazing people. Even on the hardest days, I never doubt that I am loved. That’s what I am going to focus on today, not the loss and longing that has filled this year or fretful thoughts of a future I cannot predict. As I celebrate my birthday, I’m also celebrating the abundance of love in my life.

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“It’s Just a Headache” & Other Infuriating Comments

Being told it's just a headache is infuriating!Being told “it’s just a headache” infuriates readers. “Why don’t you take…” is a close second. Read on for more annoying comments that readers shared in their 30 Things About Migraine & Headache awareness meme responses. Leave a comment below to share what makes you angry to hear people say. (And here are the instructions for writing your own 30 Things.)

The Two Most Irritating Comments (By Far)

  • “It’s just a headache.”
  • “Why don’t you take [insert over-the-counter drug name here]?” (This is nearly as irritating to readers as “It’s just a headache.” The two phrases are frequently combined.)

Unhelpful Commentary

  • “Get over it.”
  • “Why don’t you go out on disability?”
  • “You need to do better at getting a handle on this.”
  • “You really need to figure out these headaches.”
  • “You need to see a doctor about that.”
  • “Why do you keep having so many?”
  • “I didn’t realize migraines lasted so long.”

The Fix

  • “Can’t you just take a pill?”
  • “Have you tried…”
  • “You need to see my doctor/chiropractor. They can fix you.”
  • “You just need to drink more water.”
  • “I have headaches too. You just need to get out more. You need to exercise more.”
  • “If only you would…”
  • “You just need to (fill in the blank with crazy random suggestions).”
  • “Have you tried X, it cured my cousin’s migraines.”
  • “Just pray.”
  • “If you just lost weight, your (whatever symptoms) would disappear /reduce.”
  • “Take a Tylenol.”
  • “Just drink salt water, or lemon juice [or some other substance that 40 years of migraines have proved useless].”
  • “I know someone who used to have migraines until they gave up cheese or chocolate or wine.”

Dismissal & Invalidation

  • “l have migraines and they don’t stop me.”
  • “Migraines aren’t that bad.”
  • “Well at least it’s not something worse.”
  • “Oh, I get bad headaches sometimes too.”
  • “You don’t act or look sick!”
  • “You’re too young to be sick.”

Triggers

  • “Do you think it’s just stress?”
  • “Do you know what’s causing them?”
  • “It must have been something you ate.”
  • “What did you do to cause that attack?”
  • “It’s only a little perfume.”
  • “It’s all natural fragrance.”

Again?!?

  • “Again, really?”
  • “You have ANOTHER headache?”
  • “You have a headache again?”
  • “Another headache?”

 

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What kind of help during a migraine attack do you want?

help-during-a-migraine“I’m really worried about her and wonder what I can do to better support her before, (especially) during, and after an attack.” The boyfriend of a woman with migraine sent me this. Since different people want different kinds of help during a migraine attack, I recommended asking her directly. But it prompted me to create a list of the kinds of help that people with migraine actually want during an attack.

I need your help. Here are the questions I’d like to address. Please leave your responses in the comments (or respond to this message if you receive posts by email). Answer as many or as few as you’d like.

  • What can someone do to help you in the early stages of a migraine attack?
  • During a migraine attack, do you want someone with you or to be left alone? If someone’s with you, what do you want them to do? If you’re alone, do you want someone to check on you?
  • What would help you when you’re recovering from a migraine attack (postdrome)? Do you need to take it easy for a while or do you resume life as if the attack never happened?
  • Between migraine attacks, is there any way someone could help you make your next attack easier?

In my dual migraine household, we have a different routine depending on who is having the attack. When Hart has one, I put water, ear plugs, an eye pillow, and the remote control for the light/fan beside the bed while he takes his meds. I smooth the bedding, arrange his pillows, and turn on the air filter for white noise. I make sure he has his phone and that my ringer is on so he can reach me if I’m out of earshot. Then I leave him alone. After the worst of the attack, I make sure he’s fed and we usually do something low-key, like watch TV or a baseball game.

My migraine attacks are so varied that we take a case-by-case approach. Sometimes I only need help getting my meds. Sometimes I need help to bed, with gathering my migraine supplies, or finishing up something I was in the middle of doing (which usually means having Hart put food away). Depending on how severe the attack is and if I can sit up, I either spend it alone or watching TV. If I can think clearly (which is rare), we play a game. Same goes for postdrome.

I’m looking forward to hearing your thoughts!

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Showing Others What Migraine is Like in a Game

14 DaysWe’ve all wished we could place someone else in our migraine shoes so they can see what it’s really like to juggle the demands of the illness. 14 Days, a tabletop game, is attempting to do just that. In this two-person game, players try to manage their time and responsibilities in a two-week period never knowing when a migraine will strike. When a migraine hits, they then have to decide if it’s worth taking meds from a limited supply and what falls through the cracks.

14 Days is a narrative game. The Kickstarter description explains it as: “On migraine days, the other player will ask you a question about how migraines impacted your day. Something like, ‘Who felt let down by you today?’ ‘What promise did you make to yourself today?’ and ‘What new ‘cure’ did someone share with you today?'” Reading that description, I thought, A game that requires me think about how I let people down? No thanks, I already do that every day. But my gut reaction was overshadowed by the games tremendous potential for awareness-raising.

The game provides the chance to really talk about the difficulties of managing migraine (or many other chronic illnesses) and to let someone experience, to a small extent, the daily frustrations we face. Then it encourages players to talk about the impact of migraine and how we cope. In an interview I did with Hannah Shaffer, the game designer, she said that playtesting the game has helped her talk about migraine in ways she never could before.

All that and the game looks like it will be fun, the artwork is gorgeous, and it helps support another person with migraine who is doing great work to raise awareness.

Learn more about the game and hear more from Hannah in my writeup on Migraine.com: Putting Others in Your Migraine Shoes… With a Game. The Kickstarter campaign for 14 Days runs through July 28—just four more days. Pledging $8 will get you a PDF copy of the game when it is released; $25 will get you a full boxed version. With 259 backers, Hannah and her team have met their initial goal; now their stretch goals are within reach. Even if supporting the game isn’t in your budget right now, it’s worth taking a look at this creative approach to raising awareness about the impact of migraine.

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Blog Dedicated to Chronic Illness and Marriage

Chronic Marriage is a fabulous blog on chronic illness and marriage that I’ve just stumbled upon. The blogger, Helena Madsen, not only discusses issues that relationships face when one partner has a chronic illness, but gives concrete suggestions for coping with them. Some that have caught my eye:

The posts are directed toward married heterosexual women, but much of the advice seems like it could be applicable to all romantic relationships. I highly recommend check out this blog!