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Posts Tagged ‘chronic migraine’

Catching Up

June 3rd, 2009

A poem about talking to others about chronic illness.

Catching Up

What’s going on? (pain in my head and struggle every day)
I write and work, children grow and amaze,
I walk the field when I am able and drink in the richness of the world.
Many days my world narrows to this pain in my head, and my struggle:
I must try – help to keep this family afloat, and I haven’t the stamina
or time free from pain
to stay on my feet more than half the day.

Why haven’t I told you?
I could not bear the disappointment in your eyes,
the well-meant advice and suggestions.
This was never who I set out to be.
I did not say I think I will grow up, yes I,
this talented and brilliant child,
I will grow up to be a sick person.
No, this was not my agenda.

Why have I been out of touch?
I could not bear the hope in your voice,
when I have a good day – that now I will be all better,
I could not bear you rushing to me with your cures for the incurable.
I could not bear your pain for me, mirroring my pain for me.
I could not bear my envy of your life.
I have learned lessons costly in the teaching
and too painful for a Christmas letter.

Hope is with me every day. And fourteen years of worsening health,
more Migraines,
I grow older, the future is uncertain.
I have a sensitive system,
I have fought knowing that I have a sensitive system,
and it has cost me.

Now I try acceptance for a change.

What’s new with you?

- Megan Oltman

Writing pen image courtesy of Toshiyuki IMAI.

Tags: chronic illness, chronic migraine, poetry
Posted in Communicating | Comments (6)

Being Chronically Ill, and Feeling Well

March 5th, 2009

I woke up feeling well, and well rested, before my alarm went off this morning. That may not sound like a big deal, but it is very unusual for me, and worth commenting on. I went to bed last night with a Migraine that hadn’t fully resolved, and with a queasy stomach, which I thought was nausea from the Migraine. The head pain was completely gone this morning but now in early afternoon my stomach has gone back to feeling a bit queasy, so I am wondering in retrospect whether the stomach gripe yesterday was Migraine nausea or IBS or whatever else this may be that I am feeling today. Having multiple chronic illnesses is like that. Most of the time I’m grateful if nothing really major is going on. It’s rare that some degree of minor ick isn’t happening, and it’s also rare that I can sort it all out and say definitively what is bothering me on a given day.

I felt so well that I set my Facebook status this morning to say “Megan Oltman is feeling really well for the first time in weeks.” Within a few hours I found myself musing on what exactly “feeling really well” is, whether it’s a moving target, and whether it’s a claim I can make. I’m not feeling as well as I was when I got up this morning. On the other hand, I don’t have a Migraine, my stomach is only a little queasy with no major pain or cramping, I don’t feel fatigued, I am mentally clear, I am not congested, I am fairly energetic - this is a good day! I might even color it pink!

I have a Wellness calendar which I color code to indicate how well I am on a given day. This allows me to keep statistics and track trends. I calculate how many Migraines per month I have, how severe, how long they last, what triggers them and what I do to treat them. I calculate how many days I am sick but functioning, how many days semi-functioning, and how many completely out of action.  Each type of day has a color. Days I feel great I am “in the pink.”  Then I calculate percentages of wellness and illness for a given month, for two and four months trends, for a year.  Yesterday I caught my statistics up and discovered that 2008 was my worst year for wellness since I started tracking.  Not that I couldn’t have told you that by gut feel, too, but it’s a rude awakening to see it in black and white and pink and orange and brown… I really think I deserved a pink day after that.

A dear friend, who lives far away, and who I don’t talk to nearly often enough, read some of my writing recently and told me she was surprised to hear me describe myself as having been chronically ill for the past 14 years. She thought I must be uncomfortable talking about it, or why had I never told her? Laura’s a perceptive one, and of course it has been uncomfortable to talk about, especially in the first 8 or so of those years where I was trying to figure out what was wrong with me, blaming myself, thinking I was a hypochondriac, all the things that so many of us do. Now I think it’s not so much discomfort as just a long story to catch people up on. That’s part of what I try to do here. I am chronically ill. I have chronic Migraine disease, chronice fatigue syndrome, irritable bowel syndrome, multiple allergies, and chronic, or at least frequently recurrent, sinus infections. The good news is that I am actually up and functioning about 75% of the time!

February was a bad month. I was sick 14 out of 28 days, and that doesn’t even count days I was okay all day but was knocked out with a Migraine in the evening. Today I got out for a walk. I am clawing my way back to the top of the mess in the house and on my desk, and feeling caught up with my work again. The sun is shining, the snow is melting, and I feel well. Pink? At least pinkish!

- Megan

Tags: allergies, chronic fatigue syndrome, chronic illness, chronic migraine, irritable bowel syndrome, sinus infection
Posted in Communicating, Musings | Comments (2)

Update from Migraine-land

May 5th, 2008

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!

- Megan

Now the dogwoods are blooming - life is great!

Tags: Alice in Wonderland Syndrome, chronic fatigue syndrome, chronic migraine, cochlear dysfunction, disease management, migraine, migraine aura, neural fatigue
Posted in Managing | Comments (4)

It’s a Migraine, my friends

March 6th, 2008

Does Migraine negatively impact friendships?  You’d think so, wouldn’t you?  I’ve certainly changed more plans due to Migraine than anything else.  On the other hand, life, getting married, being an adult, being out of school, having a job, and having a family, can all impact friendships.  Add Migraine or other chronic illness to that list, and it’s the icing on the cake.

I must say all my friends seem to be quite understanding of my need to cancel plans, or the long gaps when I’m not in touch.  They are concerned and loving when I share with them about my struggles with Migraine.  I think,though, that I’ve already gotten them trained not to expect too much from me!  The best I can say about that is that none of them are all that great at being in touch either!  Which at least takes the edge off my guilt feelings.

My best time for friendships was the last two years of high school and the four years of college.  Law school wasn’t half bad either.  And my first few years of work, before getting married.  I was in a fun and stimulating environment, with a lot of people my age, sharing a common experience.  The first inkling of
change came when I fell in love, and my friend Kathe said, “We won’t be seeing much of you for a while.”  I vowed it would not be so, but sure enough - if you’re spending lots of wonderful delicious time with one person, you can’t spend as much of it with your friends. 24 hours in a day, right?  (Here’s me and Kathe in college.)

And then the pressures of a career close in.  And if you have kids - forget the next 10 years at least!  Then you leave the city where everyone was a subway ride away and you move to where you have to drive to get anywhere, where everyone’s more spread out, everyone has oodles of plans with their own
kids, and the people nearby aren’t always the ones you’d most want to hang out with.

But this was supposed to be about Migraine.  My migraines increased steadily at the same time these other life pressures increased.  Life threw some more things my way - the terminal illnesses and deaths of my in-laws, the long recovery from grief in my own household, my sinus problems, severe allergies, career changes for Danny and me both.  There have always been dear friends who I can call and cry to, or laugh with.  Sometimes I wonder how they could stand my repeated tales of woe.  As my migraines increased, time spent with friends decreased.

I just don’t see my friends, or talk to them, enough.  I miss them.  I’ve been missing them for over 20 years.  And I know Migraine has made it harder - much harder, for me to make new friends.  On one famous occasion Danny and I had an outdoor brunch at a trendy place with a couple we really liked - and I managed not to puke in the gutter until we were crossing the street back to their apartment.  We never socialized with them again!  Coincidence?

Year before last one of my best friends from High School, Laura, was ordained as an Episcopal deacon.  I flew out to Chicago for her ordination, meeting up with two more of our closest High School friends.  I endured long flight delays due to thunder storms, a noisy hotel, and lack of sleep.  Had a wonderful day
at the ceremony and party with Laura and her family, and David and Vick.  My migraine didn’t hit until I was out to dinner with David and Vick, head down on the table, unable to eat any of the expensive gourmet food I had just ordered.  They took me back to my hotel and took care of me.  They were angels.  But it was not how I had wanted to spend the time with them!  (The picture is from Laura’s ordination party - me & my High School buds, 29 years after graduation!)

Life is hard enough on our relationships.  We don’t need Migraine on top of it all, making it harder.  I just try to keep sharing, keep calling, keep trying to make plans.  And when I do talk to my friends, I feel so much better.

- Megan Oltman
Friends do make life worth living!

Tags: chronic illness, chronic migraine, friendship
Posted in Musings | Comments (2)