This is my journal of living with Migraine and other chronic illness. Trying to live well, to live a purposeful life, with chronic illness, since I don't get the choice of living one without it!
My own entry was way down the list. With your indulgence, I reprint it here.
Never Get Used to It
We never got used to the drunk next door
who broke bottles on the stoop past midnight, cussed all
night,
staggered into us as we left the apartment.
He was a feature of the landscape we were glad to leave
when we moved away.
Along with the upstairs landlords
whose children jumped off the couch above my head, all day,
while I napped with my newborn,
who thought 3 a.m. was a good time to install carpeting, KaChunk
KaChunk all night,
who coated the back yard in weed killer, fumes rolling into
our ground floor apartment – they were a feature of the landscape we never got
used to.
So we moved away.
We never got used to the dirty old busybody next door with
his nasty comments.
We never pulled up the blinds or trimmed the hedge on his
side of the house.
We just moved away. Again.
You’d think you’d get used to the pain – it’s a bore. There’s no excitement in pain.
Just the startled moment when it comes again, crashing like
the bottles on the stoop.
Just the deadly hours of enduring, KaChunk, KaChunk,
don’t pull up the blinds and let it look in.
Never get used to the scraping, boring, searing,
pounding.
Pain management?
I thought pain could recede, a feature of the landscape to
ignore, like the cracks in the pavement.
I never thought this was a landscape I could not move away
from.
No moving van. No
packing boxes.
No new home without the pain.
Open your boxes and find the drunken, staggering,
inconsiderate,
dirty old busybody pain.
No ear plugs. No gas
masks. No prisoners taken. No quarter given.
Never get used to it.
Better late than never, courtesy of the spectacular Diana Lee – let me remind you:
Entries for
the May 2008 Headache & Migraine Disease Blog Carnival on the theme
of “Migraines & Exercise: How do you remain active” are due by the end of the day on Friday, May 9th.particularly useful, educational or inspirational for headache and migraine sufferers are also welcome. Posts may be submitted through the form on the carnival websiteor directly to me by e-mail (I’ll forward them to this month’s host)..You can get more information about the carnival at this link:Headache & Migraine Blog Carnival.
Also, please let Diana Lee know if you’d like to be added to the e-mail list
for the carnival, if you’re interested in hosting a future edition or
if you have suggestions for future themes.
Posts that relate to the May carnival’s theme will receive preference. Entries on topics that are
The April carnival will be posted on Monday, May 12th at Atomic City
My computer is well again, thank goodness. And I have just been through a bad migraine patch – 6 of the last 11 days. For those with Chronic Daily Headache or Chronic Migraine (Migraine 15 days out of the month), that may not sound too bad. A few of my migraineur friends have lived with the same migraine for 6 weeks or 5 months. On the other hand, for others who have 1 or 2 migraines a month, or less, that may sound awful. I used to have 2 a year. The good old days!
(By the way – do I have Chronic Migraine myself, or is mine still considered episodic? I have not hit the 15 days a month marker yet, but I seem to be close some months. We’ll see what Dr. Young has to say at the Jefferson Headache Center when I go in June.)
But life goes on. I learn more all the time about managing this disease. I always try to share what I am learning. I have been thinking a lot about managing Migraine triggers. Part of my recent bad streak is probably due to having been in a course that activated many triggers for me. Lack of sleep, florescent lights, lots of noise, having to concentrate way beyond my fatigue point. It took me about 4
days to recover from 2 days in that course. It was a price I paid willingly for a useful piece of professional knowledge. I can’t always avoid triggers. But I will try not to do weekend courses like that without spending a few days in bed afterwards.
My friend, neurological-chiropractor Dr. Heidi Kaufman introduced me to the concept of neural fatigue. I
haven’t found a good reference on this yet, but basically the idea is that neurons get tired out and stop functioning as well. I experience this when I am exposed to a lot of noises at the same time – I lose my ability to sort one sound from another and all I hear is undifferentiated noise. Parts of the course were like that, as some participants insisted in talking across the instructors. I believe this is an instance of what Dr. Hayrunnisa Bolay described in her research findings of
a mechanism that leads to problems with discrimination of tones and
lateralization of sound, particularly in a noisy environment, in
patients with migraine.
“Cochlear Dysfunction Apparent in Migraineurs,” April 12, 2008, RM Global Health. (Thanks to Rain Gem for pointing me to this fascinating study.)
Another instance of just how weird this disease is: for some time now when I am fatigued, I have trouble with spatial perception. This occurs most often in a car, where I have trouble perceiving how close or far away other objects are. It feels like everything is moving too fast for my brain to catch up, to quote one of my buddies in a recent discussion on the MMC Forum. I find myself afraid I am going to fast, or that I am about to hit something when there is actually plenty of room. In case you’re worrying, I pull over right away if this happens when I’m driving. It happens most often when my husband is driving, and I flinch and gasp at what appear to me to be near misses, when actually he is leaving sufficient distance, slowing down and stopping quite appropriately. I am wondering if this is an instance of Alice in Wonderland Syndrome, an unusual sort of migraine aura which affects spatial perception. I enjoyed this article in the NY Times blog a few months ago, and here’s a new one from Teri Robert: Alice in Wonderland Syndrome – The Basics. Since Lewis Carroll was a migraineur himself, he may have been describing his own experience when he wrote of Alice’s strange growth and shrinking. Adventures in Migraine-land.
I may appear to be rambling. I may, in fact, be rambling. I’m leading an exploration of migraine triggers right now at WEGO Health. It’s part of a series of lessons on Migraine Management Coaching. Please come and visit if you’d like to look more deeply into what may trigger your migraines, and how to manage your triggers!
Hello dear readers. I’ve been a bit scarce lately due to 1) a very sick computer (it’s having a relapse), and 2) a weekend training course which left me exhausted and migrainey. I have complained at length elsewhere about sitting in a flourescent lighted interior room all weekend with noisy people and not enough sleep, so I won’t go there… (Oops, looks like I did!) Suffice it to say that managing life with Migraine disease includes handling interruptions, and the past week or so has been a string of interruptions!
But here I am to remind you about getting your weirdest Migraine trigger ever stories in. Let’s keep it simple – leave them in the comments to this post. Since my computer access is still unreliable, I’m extending the deadline to Friday, May 2. But if you’ve just been waiting to send them in today, go ahead, send them in! I have gotten a few doozies – so go for it! The contest will be judged by the fabulous Diana Lee of Somebody Heal Me and the splendid Kerrie Smyres of The Daily Headache. Winners will be announced – hmm – sometime next week! Stay tuned.
For some good reading in the meantime, please read the winning entries in the 2008 Putting Our Heads Together Migraine and Headache Poetry Contest at My Migraine Connection. While you’re at it – read the non-winning entries, too!
I hope you’re enjoying a pain-free day. It seems, for now, the little guys with grapefruit spoons have stopped trying to scrape my brain off my skull. Phew!
At least, that’s the latest thinking – last year the International Headache Society moved stress from its list of Migraine triggers to a list of exacerbating factors. In other words, stress makes us more vulnerable to the things that trigger our Migraines. In other words, pains in the … do not trigger the pain in our heads – directly.
So here’s a list of things that do not trigger my Migraines:
Passive-aggressive people who don’t listen and make me want to pull my hair out. (Note: pulling hair out could well trigger a migraine.)
Days and days of mysterious computer malfunctions that cannot be solved without spending money I can ill afford. (Note: running out of money and therefore missing meals could well trigger a migraine.)
Worrying… need I say more? You name it, I can worry about it. I think it’s a genetic predisposition. Kind of like… Migraine disease! (Note: losing sleep while worrying? Bingo! Migraine trigger!)
Not getting my work done due to computer problems, and worrying. Chasing tail around in vicious circle. (See Worrying.)
And so, I am trying a mantra: “stress is not a migraine trigger, stress is not a migraine trigger, God grant me the serenity, stress is not a migraine trigger.” I’m not entirely sure this is working. My head hurts!
Actually since striking a note of hope is clearly needed here – I have better mantras. Some deep breathing – in Hummm – out Saaa… I’m going to go try that. And please pray to the computer gods for me. And maybe tomorrow I can write a better, more useful post. With pretty pictures.
When someone comes out of the closet, they take a stand, and they take a risk. For centuries, gay and lesbian people hid their identities in order to survive. Then a few people said “no more.” Decided to risk public censure, job loss, jail, so that things could change. And things have changed. Dramatically. There is still risk involved in coming out as a gay, lesbian, bisexual or transsexual person, significant risk, but there has also been a significant change in our society around this issue.
Are we willing to “come out” as migraineurs? Are we willing to tell people we have Migraine disease? To stop complaining about lack of understanding and take a stand, educate people? Are we willing to stand up and be counted – “I’m one too!” – and change the face and the perception of this disease? I thank the GLBT movement for an extremely useful analogy.
Sometimes we need to vent about how people see our condition as “Just a Headache” or “All in Your Head.” I have done my share of ranting on this point. We don’t want to have to educate people. It’s really not fair to have all this pain and have to explain it as well! (Do you hear your Mom’s/Dad’s voice in your head, like I do, saying “but life’s not fair!”) I also know it’s hard to show up as someone with a disease. A diseased person. A disabled person. A limited person. We don’t want the world perceiving us this way. Perhaps more significantly, we don’t want to think of ourselves this way.
Diseased, disabled, limited – these are common, automatic perceptions of those with visible illnesses. Being “in the closet” is not an option with a visible illness. Here again, the amazing and courageous movement for the rights of disabled people has changed public perception. The acceptance and accommodation of those who are differently-abled has come a long way, though there is still much further to go.
The blessing and curse of invisible illness is that it is invisible. No one can look at me and see that I have Migraine disease. If they are very perceptive, they might see that something is wrong if I’m in the midst of a migraine. No one can look at me and see that I have chronic fatigue. Sometimes they can see that I look very tired. No one can look at me and see that I have chronic sinus infections. Sometimes they can hear my hoarseness or congestion.
I think we all know what the curse of invisibility is. People do not understand our pain. They sometimes belittle it. Our employers may not accommodate us. Public events are not set up to make it easy for us to be there. Our dearly loved friends and family may think we are avoiding them, shirking responsibility, failing them. In a larger sense, invisibility means our diseases are under-funded, under-researched, medications are inadequate and specialists too few.
So what’s the blessing? When our disease is invisible, we can keep trying to show up as “normal.” We can avoid having potentially unpleasant conversations. We can avoid pity and put-downs. Of course, it’s a mixed blessing because people do see that something is wrong. I suspect some of the put-downs come from people seeing something is wrong but not knowing what it is. I think I’d rather be seen as someone with a chronic illness that interrupts my life, than as a messy flake who can’t be counted on to show up!
We need to remember that we migraineurs are 12% of the population. 12 out of every 100 people. 3 out of every 25! Whoever you are talking to, chances are they know many, many migraineurs besides you! Even more significantly, according to some estimates, 40% of Americans have some kind of chronic, invisible illness. Whoever you are talking to, they have people very close to them with invisible illness!
Lately I have been way out of the closet as a migraineur. I am in this public forum, all over the web with my real name, as a migraineur. I have gone to my business contacts and talked to them about the work I am doing as a Migraine management coach – and telling them that has involved sharing something of my personal story. I am someone with chronic illness who has built a business around my illness. I help others build workable lives around their illnesses. I can’t do that while hiding who I am.
These days when I show up at my business networking meetings, people ask me, with great concern, “how ARE you?” I told an associate recently, “feeling great today!” He breathed a little sigh of relief and asked “So your migraines are all gone?” (Hey, wouldn’t that be nice?) He wanted me to be better! It’s the kind of reaction I’ve been avoiding for years. “No,” I said, “it’s a chronic disease. It’s the way my nervous system is made. I wish they were all gone. But today I’m feeling great!” He nodded, I shrugged, and we went on to talk about something else.
A few months ago I couldn’t have had that conversation. For now, I keep showing up, assuming that people are not malicious, they are just uninformed. And I inform them. Gently, and as appropriate. They ask me what I’m doing these days and I tell them I’m focusing on helping people with Migraine, people like me.
So hey, migraineurs, are you willing to come out and play, out here with me, out of the closet? I’d love to have your company. We can change public perception. We can create a world more responsive to our needs, more accepting of who we are.
– Megan Oltman
Don’t forget your sunglasses, it’s bright out here!
The Putting Our Heads Together Poetry Contest 2008 is in full swing, with lots of moving entries. The deadline for submissions is April 21. Teri Robert of My Migraine Connection and Help for Headaches is providing this opportunity to use your creative self-expression to tell the world about the Migraine life, and provide a vent for your feelings while you’re at it. Please go over to The Contest Link at My Migraine Connection to enter. Experienced and non-experienced poets both welcome. If you poke around over there you may find my poem – read it and tell me what you think! Post your own and tell me you did it. (A little bit like a scavenger hunt.) And remember – by Monday, April 21st!
Poetry is the heaven of the working reason. Poetry is a divination of the spiritual in the things of sense—which expresses itself in the things of sense, and in a delight of sense. — Jacques Maritain, Creative Intuition in Art and Poetry, Pantheon (1953).
I love carnivals, but with a migraineur’s sensitivity to crowds and sound, it’s hard to stay out in the carnival long. Here’s a very quiet carnival you can enjoy at your own pace!
For the April 2008 carnival Diana solicited submissions on the topic of “your best basic advice for coping with migraines”. There are a lot of entries this month, varying from the intensely personal to the scientific and informative. Look forward to lots of good reading! Please go over to Somebody Heal Me for all the links. I will mention a few here that I’ve had the chance to read.
I wondered if I should cut my hair, and several of you said yes, including my Mom. I’m old enough now not to resist Mom’s advice – it’s usually quite good! Not to mention being mature enough to listen to the experience of my fellow migraineurs. And so, I justify what may be just a vanity post by saying… short hair is a help in managing life with Migraine. Less weight on the head, neck and shoulders. Less fussing to do. Less to worry about. If only simplifying our lives was always this… simple. Here’s the new look.
I had a couple of posts on coping with migraine that I thought would work fine for this month’s blog carnival, but I couldn’t resist doing some on-the-job research. Yesterday I had a splendid set of opportunities to get a migraine, followed by an opportunity to cope.
It went like this: First, to create the desired research environment:
1. Sleep badly.
2. Rush through getting ready and go out in rush hour traffic to coffee with a business associate. Choose the hip, cool, NOISY coffee shop.
3. Stay in the coffee shop for 2 hours afterwards doing professional reading with the noise battering your ear drums.
4. Step out into the gorgeous Spring day with the Bradford pears in full bloom along the street (they are very pretty and I am allergic to them.) Sneeze a lot.
5. Lead a seminar over lunch. Have the attendees show up late so your lunch is late. Get ravenous before eating. Then have an intensive seminar on a challenging topic, that you have never led before.
6. Back at the office, discover a major error in your publication that will cost you money you can’t afford.
7. Receive worrisome news about someone.
8. Cry.
There. A near perfect research environment. The only surprise was that the migraine pain was mild, and didn’t begin until about 6 pm.
And on to the coping:
1. Unsure yet whether it’s a “real one” or just a tension headache, take the mild and mainly ineffective pain-dullers available to an allergic person like me. (Endorphigen D-Phenylalanine supplement and Magnesium Choline Trisalycylic acid). Drink a lot of water (16 oz or so).
2. Take a fifteen minute gentle walk. This will usually clear a tension headache for me.
3. When these don’t impact the head pain, eat a light dinner. I cannot take my triptans on an empty stomach, as the ache and pressure in my trunk from the triptan will make me nauseous on an empty stomach.
4. Take the blessed and cursed Imitrex. (Blessed for usually halting the migraine, cursed for making my head go all stupid, making my whole body ache, and intestinal ickiness.)
From here on in, it’s all about comfort.
5. Receive hugs from husband and any offspring so inclined as to offer them.
6. Hug kitty-cat who will probably not come snuggle on the bed. (He comes once in awhile. But generally considers our bed to be the territory of elder cat who died 7 years ago. Can’t convince him otherwise.)
7. Lie down on comfy bed. Lights low. Soothing adobe-orange walls. Many pillows. And my stuffed animals.
Wally is the perfect size to hug.
Pepito is very soft and exact holding-in-hand size.
Willy the Wooly Mammoth is really Danny’s, but I borrow him for my other hand (he’s my favorite but don’t tell).
7. Buckwheat filled eye-mask can be cooled in the freezer, blocks the light, and puts a soft comforting pressure on my eyes.
8. Husband or offspring checks on me after an hour or two, usually bringing cups of tea and medicinal dark chocolate.
That disclaimer thing...
Remember: nothing we do here is medical advice or treatment or is a substitute for medical advice or treatment. Get competent medical advice to learn more about your migraines, possible treatments and risks.
Better late than never, courtesy of the spectacular Diana Lee – let me remind you:
