when you're partner's in pain, too

I wrote this during summer 2009 for ChronicBabe.com, but I never heard back from the very busy Jenni about whether or not she wanted to publish it on the site. So here it is in this form.

7/24/09

Overnight, tons of percussion instruments appeared all over my house. Congas in the living room, bongos in the bedroom, an African balliphone in the TV room, and a collection of maracas in the office. After three years together, my musician boyfriend moved in with me.

In truth, we've been pseudo-roommates since the summer we met. Downtime is at my house, dinner time is at my house, coffee time is at my house, and oh-my-god-I-hurt-so-much-I'm-going-to-throw-up time is at my house. That's right: I cope with migraine disease, chronic fatigue, and a host of other chronic problems, and my boyfriend has some chronic pain and migraine issues himself.

When I'm really low, J is a loving, caring nurse, albeit one who loses patience with his patient now and again. In some way or another, we've all been in his position: someone we love is hurting terribly and is unable to tell us how we can help simply because there is no solution, no cure. My college psychology professors would tell you that, when faced with a friend's problem, women will focus on listening while men will try to figure out what action they can take. There have been several instances wherein I've watched J's back as he left my darkened daytime bedroom--he shuts the door briskly in frustration as I've told him yet again that there's really nothing he can do.

We were pretty spoiled for awhile there: rare was the day when both of us were struck down. Then came last year. I'm not sure what happened to us, but last spring we turned into arthritic, achy 60-somethings overnight. Suddenly we were both sick and bedridden at the same time, and it. was. awful.

J and I are both fiercely independent (it took a couple months of exclusive dating and confessions of love before we actually admitted that we were boyfriend and girlfriend) and have trouble relying on others for help. Oh, another thing that's fun, especially when we're sick? Each of us is right all the time. Makes for some productive conversational volleys.

So let's return to the scene last year, when I was having some particularly rough migraine spells and his back was, after years of wear, was finally beginning to tear. We two were lying in bed, too worn out to take care of our own lives, let alone each other's. We bickered. I glared at him when he turned over in bed and woke me from my hazy, migrainey nap. He winced with a sharp intake of breath as I tried to hug him--no matter what, I always seem to forget how much his back hurts and squeeze him too hard.

It can be exhausting to be with someone burdened by health problems. Sometimes J's empathy is heightened and he really identifies with what I'm going through; other times, I think he sees too much of himself in me and, consequently, is a little too harsh and judgmental. (Same goes for me.)

Here are some things I try to tell myself when dealing with a stressed-out, ailing fellow:

1. Don't assume you know how he feels. Yes, you have similar diagnoses. No, you don't know how his pain affects him physically and emotionally.
2. Choose your time wisely. Have most of your health-related discussions while you guys are feeling good and healthy. Too often, we start Serious Health Talks when one of us is down for the count. I'm guilty of preaching to him about making more frequent doctor visits while he's completely tuckered out and feeling awful.
3. Remember that you have a choice in how you deal with what life gives you. As Jon Kabat-Zinn might say, it's important to respond to what you encounter and not necessarily react to it. The emotions you experience may not be under control, but increased self-awareness can allow you to choose between ignoring or indulging in those feelings.
4. When feeling healthy, teach each other what you'll need when you're sick. I know where J's medications are and will have them at the ready as soon as he asks; he sometimes knows where mine are, but there are lots of bottles and supplements and it can get confusing. Note to self: make a list he can consult so that next time you're in bed with migraine you're not calling out to the dude in the bathroom (as your head throbs with exertion), "No, not that bottle. The other one. The one on the right? NO, THE OTHER ONE!"
5. Give your partner the benefit of the doubt. Always remember that he loves you and wants the best for you, and make sure he knows the same is true for you. Try to be extra patient when he is in pain and vulnerable.

Our health problems have been addressed thoroughly, and each of us has seriously evaluated our futures: can we handle being with someone this sick? Can we hack it if our loved one's problems grow dramatically worse? Will we be okay if one of us is miraculously cured and no longer depends so much on the other? As for now, we're confident we can handle what the future brings--after all, we have a pretty good record so far.

question for my fellow migraine bloggers

Do y'all still use Wellsphere at all? I get about 50 emails a week from them (slight exaggeration?) but never click into the site. Now I only vaguely remember why I decided to stop being involved, and I'm too lazy to do research to pick at my old-self's brain.

So I'll just ask you: do you use Wellsphere? Is there any point to my keeping the account open (assuming I get more active in the health blogging world again).

Thank you. exes and ohs to you.

one of those days

Last night I said to J., "I feel really hopeful." "Good--you should!" "I always feel hopeful and excited about things, but today feels special. Something really good is going to happen. And I really think I stand a chance with this grant giveaway." "Of course you do!"

Cue 12:01 AM, when I tried and failed to submit my Pepsi project. A few hours later, adrenaline still rushing through body after having tried to troubleshoot the technological issues that held me back from submitting my little grant application, I lay in bed trying to fall asleep.

And then today was a doozie. It's rare that I'm discouraged or down in the dumps, but man--today did a number on me, and nothing even happened! (Why did I refuse to note the signs of a migraine coming on?) While running errands, I noticed that the daylight made me squint, and my vision was blurry. I took down my photo show from the Flicker Bar, and ended up getting super-teary-eyed. Not sure why, as I know I sold well (I sold enough photos to reach my goal of having enough dough to launch the Avid Bookshop website!) and had a really successful art opening on February 1st. Hell, even if I'd sold nothing, I still would've felt proud of myself for having my first-ever photo show, for doing something public with a hobby I think I'm pretty good at.

So it wasn't regret that made me teary-eyed, and it wasn't the usual reason that I cry at the drop of a hat (um, PMS, anyone?): I think it was that I was getting a migraine. Yesterday evening, I was feeling particularly euphoric, more encouraged and productive and active than I've been in weeks! But then the prodrome really set in (my blurred vision, the bright sun, the weepiness, incessant yawning) without my realizing (or wanting to acknowledge) what it was.

Now, 22 hours after my hopeful, euphoric outburst, I'm feeling okay. A little down in the dumps, a little discouraged, and a little distracted by the discomfort that's not quite settled in behind my left eye. Tomorrow I'll begin anew, having a couple of bookstore meetings and dealing with some bureaucratic bill pay stuff that will surely find me sitting on hold, book in hand for a little while.

Hope you're well.

absent migraineur

Can't say why exactly I've not been writing on here. The obvious answers refer to my very busy bookstore life (I'm opening my own independent bookstore in Athens this year), my busy personal life, and my not wanting to be on the computer after a long day of work. I have been doing pretty well, migraine-wise, and I like that I don't think about attacks during pain-free days as much as I used to. That being said, I miss the community of health bloggers and must admit that nothing beats getting a warm email from a reader who says, "At last--someone who understands what I'm going through!"

I logged into my Blogger account this evening and found 43 unmoderated comments. Unbelievable. (And few of them were spam.) For those of you out there who noticed I've been gone, I'm sorry if I've disappointed you by disappearing!

Life is good. Had a 3-day migraine attack during my birthday weekend in Miami a few days ago, but I handled the pain well and was able to have a fulfilling, fun vacation all the same. I feel that, for the most part, I'm better at coping with migraine attacks than I used to be.

My primary care doctor put me on the birth control pill, which is really helping my migraine attack frequency but wreaking havoc on my menstrual cycle. Supposedly that will clear up soon, but man! 20 day periods are not my cup of tea. Maybe it's just menopause, a couple decades early. :)

Oh, and speaking of decades: I've wrapped up 3 of 'em now. Time to change my blog description at the top of this page, as I'm no longer a "20-something"!

Finally, I'll refer you to this month's How to Cope With Pain Blog Carnival. The moderator was kind enough to include me even though my posts have all but grinded to a halt.

Take care, be well, and let me know what's new with you.

Mindfulness-Based Stress Reduction

Last week, I started formal training in MBSR, mindfulness-based stress reduction. I sound a bit stodgy calling it "formal training," but that description serves to differentiate my class experience from the half-assed mindfulness meditation I've been attempting on my own (with varying degrees of success).

I'm still at the point where, in the first few seconds after hearing the word "meditation," I think of chanting and swamis ordering me to completely clear my mind. I think of orange robes, big gongs, and Asia. I think of hippies and LSD. Yes, I am operating entirely on stereotype.

But after those first impressions have passed, I begin to think of meditation for what it is in my life, for what it is to me. Mindful meditation does not ask you to magically erase your mind. Mindfulness encourages you to be completely in tune and at peace with what's going on, to focus on the present and only the present. There's no point in scolding yourself for a wandering mind: the mind's nature is to wander, and that wandering is part of the mindfulness process. The key is to notice that your mind is drifting and then to bring it back gently to whatever you're trying to focus on.

I'm not doing the program justice. Do a google search, download some mindfulness tapes, enroll in a class. Jon Kabat-Zinn, one of the main folks who popularized mindfulness, has written (or co-written) several books on the process, and several of those books are accompanied by CDs. Worth the investment.

My instructor told us that if we could keep a journal about our mindfulness meditation practices, we'd learn a lot about the nature of our individual minds and would also notice patterns of thought. This evening I listened to a CD track of the body scan, a 30-minute process during which you slowly and methodically focus on one body part at a time. It can be extremely calming, but tonight I was just not into it. More than once I thought about getting up and turning the stereo off. I kept going, though, continually redirecting my thoughts as I got distracted again, and again, and again by potentially stressful things in my life.

So far I am most easily distracted by my to-do list. I have so much to do, so little time. And when I do have time, I waste some of it on frivolity. Other times I am not feeling at my best physically but beat myself up for not being able to plow through the discomfort in order to keep trucking.

In any case, the to-do list popped up over and over as I meditated, and I continually redirected my focus to whatever body part I was *supposed* to be focusing on. And you know what? About half the time it worked. I feel a lot more calm than 45 minutes ago before I hit "play," and I'm glad I didn't turn off the CD. The times you are most tempted to NOT engage in stress-relieving activities are most likely the times you need the most stress relief. Note to self: remember this.

Has anyone else tried MBSR? If so, any reports from the field?

stuffy head or migraine?

I'm not sure if it's my freshly diagnosed autoimmune issue, my mucositis (yech), or just bad luck, but I've gotten lots more colds in the last couple of years than I ever had before. I don't mind them so much--sometimes I enjoy the scratchy, sultry voice (it allows me sing in lower registers as I belt along with the radio in my car--I'm amazing).

Perhaps it's not the frequency of colds but their duration that has changed in recent years. I used to get a cold for 2-3 days and then have little to no trace of it left. Nowadays it seems my cold develops slowly and takes a long time to leave. This one's been around for at least a week and a half. It started with sneezing and stuffy-headed-ness. Then it moved into my throat, where it settled in and made it hard for me to speak loudly enough for people to understand me well. After my voice started coming back early last week, I figured the cold was on its way out. WRONG. It moved back into my head, focusing mainly on the left side of my sinus cavity.

Here's the rub: I can't always tell the difference between the beginning stages of a migraine and sinus congestion. From what I understand, a lot of migraineurs confuse the two. (Let's not rehash the sinus headache issue here, though.) This past Wednesday, I went to bed early with a congested head; I woke in the middle of the night a couple of times because my head was so heavy and it was hard to breathe. After awaking Thursday and walking around the house a bit, I realized I was not suffering from just sinus congestion: I had a migraine that was rapidly progressing. I kicked myself for not having taken a triptan in the middle of the night.

But it had been so hard to tell the difference between sinus pressure & the early stages of migraine!

This morning I awoke with so much sinus congestion on the left that I immediately opened my bedside table drawer to get a Maxalt tab. There was no such tab in the drawer, so, favoring another hour in bed over getting up to look for my triptan pill, I took a nasal decongestent (I have an emergency drug arsenal next to my bed, of course). Upon waking in earnest, I dared to try my neti pot again. (Months ago I had a strange experience wherein using my neti pot led to an immediate and severe migraine--not sure how I screwed up, but I did and it HURT. I've been scared to try the pot again ever since despite its having worked wonders pre-pain-incident.) I can't claim that any one thing cured today's head issues, but the decongestent + neti pot flush rid me of the migrainey feeling I had. Interesting.

Do any migraineurs (or folks with sinus problems like me) have any tips as to how to know when to use a triptan and when to focus on the sinuses? How do you tell the difference between the beginning of a migraine and a side effect of sinus problems?

stop faking it, people--you're giving us a bad name!

This makes me angry!

Figures it'd be something frustrating to get me back here on the blog after such a long absence. When I first read this headline ("Migraines now top excuse for calling in sick,") I was ready to fill out a comment on the Telegraph's page. I can hear myself starting to preach now: "You really should have used the word "reason," not "excuse." Migraine is a disease, not a..." You guys know the drill.

Imagine my surprise to find out that the word choice in the article title was right on!

If you are a migraine sufferer and are willing to be open with your boss(es), then more power to you: you increase awareness of the disease when you are honest about why you can't be at work. Yes, there are risks. Yes, that bitter woman in the back might snicker at you yet again and think you're a wimp who can't handle a headache. You know what? Screw her! Take care of yourself.

If you are NOT a migraine sufferer, then don't use our illness as a reason for you to take a vacation day. Admitting that you're faking it doesn't really help your case or ours: it just makes people less likely to believe all of us next time they hear the word "migraine."

April Headache & Migraine Blog Carnival posted!

A helpful potpourri of writers' favorite posts from the past month. Enjoy!

the joys of being a woman!

some of my favorite things to bring my headachey self some relief:
delicious cafe, reading, and my rose-tinted, anti-fluorescent glasses

Each blessed month, I am so proud to be graced with an entire week of cramps, headaches, exaggerated achiness, remarkably spectacular swings in mood, irritability with the people I love most, and--best of all--I get to deal with my Feminine Products nearly every hour on the hour for a couple of days! IT'S AWESOME.

But the migraine that accompanies this monthly extravaganza of womanhood is probably the best part of it. It's so great that after a couple days of using triptans I'm not allowed to use any more. That means I get to take ineffective rescue meds and just bask in the glory of my brain chemistry, thinking of how every action I take brings me pain and there's relatively little I can do about it until my period is gone.

Today we are on day one of not being able to use triptans. Luckily I have a two p.m. deadline and a 2:30 PM doctor's appointment.

It is bothering me that I wrote the time in two distinctly different formats just then. But to show how casual and carefree I am nowadays, I am just going to LEAVE IT AS IS!

A bit stressed and headachey but chipper enough to drive you crazy,
Janet

I think more than I write.

I think about writing many times a day. That is to say, many times a day I find myself thinking about writing. During my evening walks, I look around my neighborhood and think about all the deep, meaningful things I could say. Of all the wry observations I could make. Of all the silly commentaries I could provide to entertain myself.

But when I get back home again, I don't write. I've neglected my blogs, my letters, and my journals. I've neglected my email. I just haven't felt like writing when actually presented with the chance.

The angel on my shoulder encourages me and fills my head with stuff and nonsense: Janet, you're not writing because you don't yet know how to express all the deep, impressive, and wonderfully moving thoughts you're having. You have a Master's degree with a focus on creativity theory: you know that you must incubate before you can produce an original idea, an original creation! You're just incubating!

The cynical, self-deprecating part of me has different thoughts all together: You're a scaredy cat. From the moment you learned to put pencil to paper, you've thought--at least glancingly--that you'd become an author. You are a good writer but will never have the guts or the willpower to be a great one, the one you know you can be. So you just rest on your laurels, write nothing, and tell yourself that you'd be great...if you were in the mood to try.

Of course the truth probably runs somewhere between those two extremes. I definitely know that elements of each argument hit a little too close to home--this suggests to me that both my kind and evil sides know a bit of what's going on inside my mind regaring my self-motivation (or lack thereof).

Writing this blog has helped me in ways I could never really describe. I have a sense of community with readers and with other folks whose blogs I read. There's a whole community of us out there, a community I tapped into at just the right time, right when I was feeling most isolated about my disease. Telling my friends and family was a big step--an important one that has improved relationships and opened lines of communication. But it's also hard to post about pain and suffering when you know your mom or sister or aunt or boyfriend could be reading. Strangers out there may sympathize with our migrainous plight and wish us well, but family and friends can be hurt reading about how much of a struggle it is to live with this illness day to day.

view from my apartment in Bs. As.

Recently I've been both bummed and relieved. Strange combination, I know. The month I was in Buenos Aires was wonderful and lovely and relaxing, but my migraine frequency skyrocketed. A disappointment, to say the least, especially after I'd been doing remarkably well post-December's doctor appointment. In Buenos Aires, I had to break my healthy diet rules nearly every day, as dairy and white, enriched flour and other no-nos were sometimes impossible to avoid if I wanted to have any sustenance at all. I lived with 1-2 roommates (friends) at a time in a comfy but small apartment. This led me to a truth I'd been on the brink of already: having a boyfriend as an occasional roommate is far different from having a friend-roommate. At least if the boyfriend is J. and the girlfriend is me. I know that my friends don't need to be entertained; I know that roommates/guests don't necessarily need my help and guidance and company. But, man! It was definitely more of an effort sharing a space with them than it is sharing one with J. (We have yet to do an official move-in, but it may happen by the end of this year. Maybe. We'll see.)

But back to the matter at hand. Since I've been back from Buenos Aires, I've not had one migraine. Not a one! I've relished the mere thought of being able to eat my meals in my own house. I've eated two meals out in two weeks. (Well, three meals if you count that very necessary 3 AM snack at Huddle house with Christa last weekend.) This is not like me. I tend to eat out a few days a week. But now the thoughts of rice and stir-fried vegetables trump any desire for pizza, heretofore desirable cream sauces and pasta, etc. I feel remarkably better when I eat well, and the truth of that was emphasized by the month in Argentina when I couldn't stick to my diet rules. Now I'm feeling no migraine pain and have no tummy issues. Whew.

However, something else is afoot. I'm exhausted, achey, tired, and more all the time. The list goes on and on. I've a sneaking suspicion something else is going on with my body. Next week I see the doctor again and will figure some more stuff out. Maybe results from yesterday's blood work will yield some answers.

All in all, things are going well and I'm confident they'll keep getting better. Hope you're feeling similarly about your own lives.