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Posts Tagged ‘chronic illness’

Blogging for Invisible Illness Awareness Week

August 31st, 2008

Coming soon – I will be doing a post on Migraine disease as an invisible illness for Invisible Illness Awareness Week, Sept 8-14, 2008.  Please visit the Invisible Illness Awareness Week Blog for lots of great posts on what it means to have an invisible illness – one that effects your life and abilities, that others cannot see.  I’ll be posting on the topic on September 8, along with lots of other bloggers on that day.  If you’d like to join in, visit the blog link above.

What can we do about our invisible illness?  Nancy Bonk had the great idea of wearing a big bandaid across our foreheads – to make our disease visible.  I’m thinking maybe a baseball cap with a bandaid embroidered right across the front – “Migraine Disease and Headache Disorders – Invisible No More.”   What do you think?  Would you wear one?

– Megan

Tags: chronic illness, headache disorders, invisible illness, Migraine disease
Posted in Advocacy, Weblogs | Comments (5)

Feverish Thoughts

June 13th, 2008

I am slowly recovering from the bronchitis that has had me out of action for nearly two weeks now.  The first week was characterized by a fever ranging from 100.5 to 102.2 F (38 – 39 C).  The common medical wisdom these days, as I have heard it from a number of doctors, is that fever is a positive reaction of the immune system to an infection. To put it in lay terms, the body seeks to kill the infection by burning it up.  Therefore many doctors now recommend taking nothing for a fever, unless the patient is uncomfortable, or of course, unless the temperature rises dangerously high.  So if you can’t stand the body aches, or the head ache, or the heat itself, go ahead and take an analgesic, otherwise, let the fever burn.

I’ve been wondering how many people, given a choice and with analgesics available, actually just let the fever burn.  I am allergic to analgesics.  Incredibly, this was my first episode of fever since I developed the allergies five years ago.  My doctor recommended a homeopathic Belladonna preparation if needed for fever reduction, but I couldn’t find any to buy.  So I had a week of letting the fever burn.  It was an interesting experience, to say the least!  While my eyes were open I was fairly cogent, but had occasional visual and auditory hallucinations.  Nothing too exciting, a repeated mechanical banging sound in one ear, and a teddy bear face in the neighbor’s pear tree across the street that grinned and winked at me through the window.  I did not feel like myself at all; it was hard to even remember who “myself” was.  I felt like an alien from the planet Febrile!

It was very weird living on another planet. My body size was all over the map – at one point I was convinced
that the pillow I was touching on the other side of the bed was part of my body. Other times I felt very tiny, like a little fold in the bed-covers. Whenever I shut my eyes the fever dreams moved right in, with always a
committee of six or seven people in my head furiously making plans and fixing things. I’m sure if I just could have somehow recorded what went on my brain I would have written 16 volumes of great literature, solved global warming and created world peace too, while “we” were at it.  You’ve heard of doing things at a fever-pitch?  My thoughts were like that.

The worst thing was the head pain.  Headaches go along with fevers; for a near-chronic migraineur like me any headache has a high likelihood of morphing into a Migraine.  The persistent coughing of the bronchitis also banged my head around.  I woke every morning with a headache and developed a Migraine every day by afternoon.

I had one really funny fever dream where I closed my eyes and there were 7 of me around a conference table and one of us had this really searing disgusting hideous head pain, and the other 6 of us voted her off the show!  She had to go – and my goodness I woke up and my head pain was gone!  I don’t know but I may have to see if I can tap into the power of the fever dream committee other times too.

Everything is relative and I have been profoundly grateful that I am not that sick all the time, or even often.  I’ve been thinking about acute versus chronic illness.  I live with frequent Migraines, frequent fatigue, fairly frequent infections.  I know there are others of you whose chronic illnesses are more debilitating, and more progressive.  But mine pale in comparison to a high fever and racking cough, aches, shakes, dizziness and passing out.   Being that sick for an extended period of time could kill you!   I guess that’s why we read in 19th century literature of a “dangerous fever.”  I sit in awe of my body’s ability to fight off an infection like this one, largely unaided by modern medicine.   I’m giving it lots of rest and fluid and letting it do its thing.  It’s getting the job done, slowly.

– Megan Oltman

Back on good old planet Earth.

Heart of fire image courtesy of Marcus Vegas; pointing finger image courtesy of Lisamarie Babik.

Tags: analgesics, bronchitis, chronic illness, fever, migraine
Posted in Medicine, Rant | Comments (6)

My Migraine Story

May 30th, 2008

What’s your Migraine story?  We all have one (all of us with Migraine disease, anyway).  Having a sensitive nervous system sets us apart from the majority of people around us, and we all go through a process of realizing or coming to terms with that.  With what it means to us and with how it impacts us.  That process  and story have become clearer to me as I have entered the on-line Migraine community, in this curious role of migraine blogger.

I have worked as a coach for many years now, helping people set goals, make choices, and live powerful lives, both in personal and business contexts.  In the course of that work I have had to make many accommodations to my Migraine disease, my chronic fatigue syndrome, and my recurrent sinusitis (to name the major culprits).  I have had the privilege of helping a number of other people with chronic conditions figure out how to structure their lives, businesses and careers so they can live fully despite their illnesses.  The moment of truth for me came when I realized, about 7 months ago, that my chronic illnesses are not just an impediment in my life.  They are an opportunity to share my professional tools and skills, and the wisdom I have accumulated, to help others manage their lives with Migraine.  I was already doing it, but I had one of those moments where perception shifts, and I saw that this could be a major focus for me.  Call it an epiphany, an aha, or a moment of madness, but here I am.

In my own journey it’s not a bad thing to be looking at my life through the lens of Migraine disease.  I am not interested in having that be all that defines me, but it is dangerous to ignore it.  I have questioned a lot
how my life might have been different without this condition.  I approach this question now after nearly a half-century of life.

I’ve had migraines since at least my teens. I don’t remember the first, but at 17 after
surgery at Montefiore Hospital in the Bronx (that’s another story), leaving the hospital we drove past the Montefiore Headache Center and I thought “Wow, someone actually treats headaches? Someday, maybe soon, I’ll have to go there.” So I’m guessing I had migraines before 17.  Certainly, the first few I remember clearly, in my mid-twenties, I was already calling them migraines.  I could distinguish the headaches with nausea, vomiting, and nearly unbearable sensitivity to light and sound, from the regular, run of the mill headaches.

In retrospect, migraines have had a big impact on my life and my choices, even though they didn’t become frequent for me until my early forties. The biggest impact in my earlier years was on my career. I
completed law school and went to work at a big Wall Street firm. Everyone who knew me was surprised by that choice, but for me it was important to prove I could succeed in a high prestige, high pressure
world. I proved it for two years and left. In the meantime I had some doozies – vomiting in the gutter in NYC became a familiar shame in my life. I would have told you at the time that my migraines were triggered by stress.  But in retrospect, those moments of high stress came with sleep disturbances (pulling all-nighters to get a brief finished or prep for court), excess caffeine, and the poor eating that went along with them. I went into the less pressured environment of a legal services office, and migraines became less frequent, until after my first child was born. Then I had the new pressure of juggling baby and child care, parenthood, chronic lack of sleep, with part-time legal work. Oh, and let me tell you about part-time legal
work. Part time in the law is like 80+ hours this week and none for the next 2 weeks, not like “I’ll work Monday, Wednesday and Friday when I have child care!” A set up for stress, exhaustion, a frantic life.  By our mid-thirties we had two kids, a house, a yard, a mortgage, and one of us (me) got sick a lot.

I left the practice of law a decade ago and began doing work that I could structure in a way that worked in my life.  Writing and coaching.  Doing that work while making sure that I slept enough, ate right, used meditation as a regular practice.  I made those career and lifestyle changes just in time to develop anaphylactic allergies to pain-killers; just in time to have a sudden increase in my migraine frequency from a few a year to a few a week.

To tell you the whole story would require a book.  I’ll let you know when I’ve gotten it written.  The main thing I am looking at today is who I am – as a migraineur, yes, and as me, who is much more than just this disease.  I have always thought of myself as tough.  You can laugh if you want.  Yes, I’m rather small and soft, not particularly athletic, and I’m not a mean person (though I can be sarcastic).  There’s a mental toughness, though, a determination to keep going, to build, to create.  And on the other side of that, I have to accept my delicacy.  We are sensitive, we migraineurs.  Sensitive to our environments.  Vulnerable to odd things that don’t bother other people.  I can’t seem to change the fact that I get sick a lot.

For a working symbol, I’m going to use my Iris.  They are profoundly rich and beautiful.  They do bruise and wilt easily.  They need to be fed, watered and cared for.  But they keep coming back, and growing, taking more ground.  They are a connection to the splendor of life.

What’s your Migraine story?

– Megan

Tags: chronic fatigue syndrome, chronic illness, life coaching, lifestyle, Migraine disease
Posted in Medicine, Musings | Comments (2)

What are you complaining For?

March 23rd, 2008

Hi there – Happy Easter to all who celebrate it. I am up and walking around on a beautiful, chilly, early spring day, with bulbs poking their green noses out of the dirt (and a few, their bright flowers.) I am headache free for the first time in 5 days and enjoying a lovely family visit. I really don’t feel in the least like complaining. But I thought about it a lot while I lay in bed this past week with sinus Martians and Migraine beasts fighting for control of my head. (They both won.)

Some folks just don’t like to complain. That preference is generally seen as virtuous, stoical (for which read, a good thing) and considerate. Hazel Reese’s autobiography, a tale of a life with chronic illness, is entitled I Will not Complain. I don’t intend to take anything away from the non-complainers, they have my reluctant admiration. You may have guessed that I myself do not often rank among their numbers. I do think there are several ways to look at, and use, the practice of complaining, or not complaining.

What are you complaining for? I mean what is the point of complaining? Actually there can be several points. The complaining we don’t like, the kind we, well, complain about, is the complaining that has no purpose other than to make us feel sorry for the complainer. Whining. Whinging. We don’t want to go  visit Aunt Sue or we’re hardly friends with Bill anymore because all she/he does is whine. Taking it down a level, what we’re really objecting to is an evasion of responsibility. If only you knew how bad it was for me, you wouldn’t expect so much of me. If only you understood, you would take all these burdens from my shoulders.

There are several other reasons to complain, though, which are perfectly responsible, even virtuous. We can complain to get it off our chests, what we coaches sometimes call clearing. When I sit down to a coaching session with a client we usually spend a few minutes noticing if anything is getting in the way of our ability to be fully focused in the present – and if something is, we name it so we can put it aside. “I’m feeling sad about…, I’m upset by…, I’ve been angry about…” Those emotions keep on operating in the background and color the way we think and what we see as possible, if we don’t give them voice, whether we write them down or share them with someone who will help us clear our minds.

And then there’s complaining to get results, to make change, to change history. Most of us have seen the bumper sticker “Well-behaved women rarely make history.” Any social change worth mentioning has happened with a great deal of powerful committed complaining. Public opinion does not change without an awakening of empathy. You can awaken empathy by complaining, by making sure someone else really  gets it, really understands your world. I’m thinking about the ADA (Americans with Disabilities Act), which took a great deal of powerful committed complaining. For those of us with invisible illness, with Migraine Disease and the other chronic icks that have people saying “but you don’t look sick…”, it might not be a bad idea to complain more. Not like Bill and Aunt Sue, like the ADA advocates.

Try these: “I don’t look sick, but I feel like there’s a squirrel with a chain-saw in my head” (thanks Migraine Chick!); “Oh yes, I’d be fine, if only they’d stop trying to remove my brain with a grapefruit spoon” (that was me for the last week). Or a more sincere heart to heart with the non-migraineur of your choice, asking him/her to support the AHDA (Alliance for Headache Disorders Advocacy) efforts to get a fair share of NIH funding for headache disorders!

“Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” Margaret Mead

– Megan Oltman

Gripe, gripe, gripe!

easter egg photo courtesy of Jennifer Murawski; spring bulbs photo courtesy of irishninja01; hyacinth photo courtesy of B~

Tags: Advocacy, chronic illness, commitment to change, complaint
Posted in Communicating, Managing, Rant | 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)

From my bed of discontent

January 7th, 2008

This is my journal of living with chronic illness.  Trying to live well, to live a purposeful life, with chronic illness, since I don’t get the choice of living it without!

Journal entry from August 22, 1995 – “This is my fifth sinus infection since last November or December. It must be a dust problem; the house isn’t clean enough and I can’t seem to find the time to really keep it clean. The piles of things to do, literal and figurative, collect enough dust to keep me sick. But now the front of my face feels like it could explode and all I want is chocolate.” That was when Adam, my youngest, was 6 months old, my in-laws, Marika – 6 weeks dead, Walter – 3 months dead. Five sinus infections during that pregnancy and post-partum, through those deaths and mourning.  Sinuses dripping along with the tears we shed.  I’d say that was the start of the chronic sinus journey. 12 1/2 years ago.  I had a baby and a four year old, a law practice I hated, a bereaved husband, and life felt way out of control.

I remember the first time the sinus pain hit – I was 13.  Bronchitis, pneumonitis, those were my common issues then, and into my 20’s.  When the front of my face started burning that evening, riding the train home from a play in NY, I remember thinking that sinus problems sounded like a very grown-up ailment.  Anything for distinction.  Dramatic child!

I don’t remember the first migraine – the first one I recognized as a migraine already felt familiar, like something I’d felt before.  A couple of big ones in my late 20’s, then one or two a year until I turned 43.  Then they became the ominous background chorus to the soundtrack of my life, the music threatens, looms, builds, then the crescendo!  The year I turned 43 I had 2 or 3 migraines a week.

Today I am writing from my bed of pain – well, not too much pain today but writing from my bed of discomfort doesn’t have the same ring to it. How about, writing from my comfortable bed of discomfort and discontent? Now we are edging closer to the truth. The bed is very comfortable. My sinuses are full of ache and pressure. My head is only a little dizzy if I’m propped up in bed – more if I sit or stand, a lot if I sit or stand for more than a few minutes. I don’t have a migraine, for 8 days now, hooray! The migraine beast lurks around my temples, ready to move in if I give it a chance, boohoo!

And as for discontent – I am discontented. Downright disgusted. After all I’ve done to beat this… after all I do to manage it… after 12 years of recurring illness.  No treatment, no respite.  I’ve had enough! Thanks, done my time. Ready for my parole. Hello? Anybody listening? Where is my parole officer, anyway?

I wonder how I can coach and advise people about living powerful lives when I am under the power of some recurrent infection in some cavities in my head. I keep thinking if I was really powerful I would stop having sinus infections and migraine attacks. (And irritable bowel attacks, and fatigue, and allergies, and medication sensitivities, and while I’m at it I’d stop being nearly 49 and start being 25 again. Oh Yeah! That would be power.) And so I live with this conundrum every time.  But it’s a false dichotomy.

As far as I can tell, here’s how it actually goes:

Being a powerful person without these chronic conditions may not be available to me.

Being a powerful person with these chronic conditions is available to me.

What does being a powerful person with migraine disease and recurrent sinus infections (and all) look like?

Like assembling all the information I can get about my conditions, and the best treatment plan I can, and accepting that the best treatment plan is a moving target.

Like staying connected with people when I am sick, and reaching out for support. Taking all my supplements and medications and resting when I am sick, no matter how much I wish I didn’t need to. Doing what I can to move my work forward, right here, from bed. This involves a real honest look, sometimes it involves checking with someone else if I can’t think it through myself. What can I do, without endangering my recovery? Lucky for me, I have a lot of writing to do today. I can do that right here, in bed.

It’s 6pm and my head is worse than earlier.  The stink-bugs are coming out of hiding, buzzing around the lamps in the room.  Never had them in the house before this year – and in January!  Frickin’ global warming! If they make me jump and squeal I’ll get that headache for sure, the one that’s threatening.  Stink-bugs must be accomplices of the migraine beast.

Fighting the good fight, against the beast, the bugs & the Martians.  Good luck to you in yours.

– Megan

Megan Oltman

Tags: Adam Oltman Porcher, Adam Porcher, chronic illness, migraine
Posted in Communicating, Managing | Comments (1)