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Posts Tagged ‘chronic illness’

Keep Working? But How? Author Rosalind Joffe Gives us Some Clues

November 18th, 2008

 

Rosalind Joffe, co-author of Women Work and Autoimmune Disease: Keep Working Girlfriend stops in today on her virtual book tour. I asked Rosalind “how can we deal with the conflict between the need to slow down and care for ourselves, and the pace and intensity of the working world?”  Here’s Rosalind’s response, in our guest post for today:

Continuing to work – and managing to achieve some level of success – while living with chronic illness isn’t for everyone. Women Work and Autoimmune Disease: Keep Working, Girlfriend! explores the strategies and tactics that can help you. But the current work environment can pit us against our best desires to work and maintain a balanced life.

When my mother retired in 1992, she’d been working for 40 years. Testimonials at her retirement dinner reflected on her strong work ethic and her achievements. She’d reached an unusual level of success for a woman at that time in New York City public school administration. And she did it working between 40 to 50 hours/week, with a total of 3 months vacation yearly.

That’s just no longer possible. In the current labor market, the notion that there are no boundaries to the work day and working nights and weekends is the norm. Nor is this attitude limited to “white collar” or salaried jobs. Even hourly workers are expected to work more than their base time.

Cost cutting in a shrinking economy often means doing the same job that 1.5 or even 2 workers had done previously. In this 24/7 work world, too many organizations, big and small, assume that workers will be available whenever and wherever, regardless of the job or role in the organization.

So what does it mean for those of us whose personal resources are being taxed to the max due to a chronic illness?

First, take stock of your situation. Look carefully at who you are now and how you need to work so you can continue to work over the long haul. Throw the picture of “healthy you” in the trash – at least for now—and take a picture of you, right now, and tape it to your computer.

Now, think strategically. Give careful consideration to a career that offers relative stability. Although the current financial crisis shows us that nothing is for certain, some industries will always be more solid than others. You might want that sexy job but are you in a position to take the risk?

Additionally, when looking for a new job, focus on finding an organization that values its employees above all else. This can be the most critical element in your ability to keep working. My booklet, the Keep Working with Chronic Illness Workbook, complements the book. It has exercises and worksheets designed specifically with chronic illness issues in mind. Use this to seek work that meets your true needs and values.

Finally, no matter where you work or what you do, set limits. As long as you’re getting your job done to your satisfaction, you can decide where to set boundaries and draw the line.

At the end of the day, only you know if you can do the job. It often means modifying your own expectations. But when you take responsibility for managing your time and energy (even if you can’t make yourself healthy), you’ve put yourself in the driver’s seat. Remember, you could have a long work life ahead of you and now is the time to make it work for you.

Rosalind Joffe, co-author of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! is president of cicoach.com, a resource for professionals who live with chronic illness. Check out her website CI Coach which is filled with resources about career challenges living with CI and her blog, Working with Chronic Illness.

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Posted in Books, Managing | Comments (2)

Migraines on the Radio

November 17th, 2008

Coach Marla of A Winning Life with RSD asked me to be on her internet radio show tomorrow (Tuesday, November 14) at Winning Life Through Pain. Please come give a listen; we’ll be on at 2:00 Eastern, 1:00 Central, 12:00 Mountain, 11:00 Pacific, talking about living with Migraine and other chronic illnesses. You can click on the link above to get to Blog Talk Radio and listen to the radio show. Hope your heads are treating you well today.

– Megan Oltman

Microphone image courtesy of Matthew Keefe.

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Posted in Communicating, Tips & Techniques, Weblogs | Comments (0)

Kreativ Blogger Award

November 2nd, 2008

One of the great joys of blogging is the on line conversation and community that is formed between those
blogging on the same or similar topics.  When I can’t reach anyone on the phone, when there is no one in my day to day life to talk to, I can come on line and seek out the thinking of, receive the sympathy of, and offer comfort to my wonderful blogger friends.  It was a joy to me as I sat alone at my computer yesterday to get notice from my dear friend MJ of Rhymes with Migraine that she had awarded me with the Kreativ Blogger Award.

MJ is a bright and courageous young woman with chronic Migraine disease, great good sense, and a big heart, and I am blessed to have her as a friend.  Do go check out her blog for some really good writing.  Thank you MJ for the honor and the recognition!

The terms of the Kreativ Blogger Award are to list six things that make me happy, and give this award to six other bloggers.

Six things that make me happy:

  1. Finding the humor in life, and laughing at it!
  2. Taking brisk walks outside in the woods and fields.
  3. Sharing ideas and having deep and intense conversations with family and friends.
  4. The great love and support of my wonderful husband, children and family.
  5. The creative, committed and compassionate Migraine and chronic illness advocacy and support community.
  6. Making lovely things, with words, cloth, yarn, food, or whatever I can get my hands on.

Six bloggers I want to give the Kreativ Blogger Award to (in alphabetical order):

  1. Eileen, of My Life with Migraine
  2. Kerrie, of The Daily Headache
  3. Marla, of A Winning Life with RSD
  4. Migraine Chick, of The Migraine Chick
  5. Rain Gem, of Migraine News Network
  6. Marijka, of Help My Hurt

Please check out their blogs for some good reading!

– Megan

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Posted in Weblogs | Comments (2)

Keep Working, Girlfriend! Book Tour

November 1st, 2008

One of the most important issues for any of us facing chronic illness is the issue of staying employed, or
how to support ourselves while managing our illness.  It is an issue we will be exploring at greater length in the coming months here at Free my Brain as we look at the merits and drawbacks of keeping a job, finding home-based employment, starting a business, or not working at all, when managing life with Migraine disease.  Rosalind Joffe, Chronic Illness Coach, specializes in helping women with autoimmune diseases keep on working!

I’m participating in Rosalind’s Virtual Book Tour, along with other chronic illness bloggers, to bring attention to this important new book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend! From Nov. 3 – Nov. 21,  the other bloggers and I will be reviewing the book,
interviewing the author, hosting guest posts, and bringing attention to this important issue.  Rosalind will be writing a guest post here on Free my Brain on Tuesday, November 18.  First stop on the tour will be at Rhymes with Migraine on November 3rd.  In the meantime, please visit Keep Working Girlfriend for a list of the other bloggers/stops on the tour.  You can also check out the book itself, which is described as a “voice of warmth, wisdom, understanding, and sisterhood,“ encouraging “women with chronic illness to stay as successfully employed as possible.” Click on the image of the book at the right to read more about it or purchase through Amazon.com.

– Megan

Takes a licking but keeps on working!

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Posted in Books | Comments (0)

Migraine News from Between my Ears

October 17th, 2008


A funny thing happens when you start blogging.  There is this little bit of celebrity that arises.  I can admit that like many people I once secretly wanted to be famous.  My friend Laura told me in High School that she pictured me as a kind of revolutionary leader, with thousands chanting my name.  If that had ever been my ambition, I’d have to say that I failed miserably.  I’ve made it through nearly 50 years of life and I don’t think even dozens have ever chanted my name.  Not at the same time, anyway.

But I digress.  I started this blog for a few reasons.  I wanted a place to share my thoughts on living with Migraine disease, and the other chronic illnesses I live with.  I particularly wanted to share my hope and strength, as someone who has come a long way in managing a life with these conditions.  I wanted to join the warm, intelligent, funny and committed community of Migraine and headache
bloggers and advocates who are making such a difference in the lives of patients and in advancing the understanding of this disease.  The big reason was this moment of truth I had almost a year ago, when I realized 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 wrote a bit more about that a few months back in My Migraine Story.

I didn’t really start the blog to keep the world posted on the doings in my own life.  I tell a lot of stories, partly because I come from a family of storytellers,and partly because I’ve always made points (with clients and anyone who will listen) by telling personal stories, about things that happen and lessons I learn.  So it’s been a lot of fun doing that here.  And lo and behold, I learn that people are actually following (to some extent) what’s going on in my life.  Little old me, Megan, Rachel & Adam’s Mom, Danny’s wife, Joan & Jim’s daughter, Jon & Ellen’s sister, the lady in the house on the corner by the field, the little red-head… that one.  It’s a small and gentle sort of celebrity, but I find when I don’t follow up on things I’ve mentioned, sure enough, you’re actually listening, and sometimes you ask.

So the news between my ears…

Hope your heads treat you well and you have an AWAP weekend!
– Megan Oltman

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Posted in Communicating, Current Affairs, Musings, Weblogs | Comments (4)

Chronically Ill? What Are You Doing for Fun?

September 22nd, 2008

Fun?  Megan, come on, what do you mean fun?  I get up, I take meds, I go to work, I try to make it through the day, I come home in pain and try to do the minimum I can to get by, feeding myself, family, pets, doing laundry, paying the bills, I collapse as soon as I can.

Fun?  Everything I used to do for fun is gone – I can’t… drink, smoke, go out in the sun, exercise, go to rock concerts, go to noisy/smoky bars… fill in the blanks.

Fun?  I can’t afford to have fun.  My money all goes to doctor bills, medications, co-pays, insurance premiums…

Fun?  Look, I can’t have fun when my basic responsibilities aren’t being handled.  I’ll have some fun after I’ve felt well enough to finish the taxes, clean the house, mow the lawn…

Have I covered everything?  Any other objections you can think of?  I want you to know I have lived my life at times inside of every one of those objections.  Who has been my biggest killjoy?  Not Migraine disease, chronic fatigue, sinus infections, nasty bosses, demanding clients or disbelieving relatives, but little old me.  My own biggest Killjoy.

But I am taking a stand for Joy, alive and well.  This is my life.  Now.  Imperfect as it is.  If I wait to
get everything done first and then have fun, two things will happen.  I will never get it all done, and I will never have any fun.

Do I want this on my tombstone:  Got it all done?  By the way, even if I want it, it’s never going to happen.  As fast as I can do something, no, even faster, the more stuff to do gnomes are creating more stuff to do.

And even if I give up on trying to get it all done, I also have to give up that I will have fun when I feel better.  What if I don’t feel better?  Sorry guys, but what if this is as good as it gets?  Don’t stop hoping and working and fighting, but I could die tomorrow.  This is my life.  Now.

So what do you do for fun?

What gets you up in the morning?

What do you look forward to?

Your life is happening now, imperfect as it is.

What restores you, restores your perspective, where is your creativity?

Laugh.  Play.  Laugh some more.


I’m crocheting a granny square scarf.  Kind of silly and retro-60’s but I enjoy it.  I am clearing my front porch little by little preparatory to stripping off the ratty old indoor-outdoor carpeting and painting it. I’m walking in the park every day I feel well enough.  Sharing books to read with my kids & husband.  Taking DVDs out of the library.  Mostly I’m concentrating on finding fun things for when I’m sick or my head hurts, and taking time for fun on the weekends, whether or not we’ve gotten through our house projects agenda.  And making plans with friends and family, not worrying whether we might have to cancel them.  Making them anyway.

– Megan

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Between a Rock and a Hard Place – How do We Choose?

September 19th, 2008

The first in a series of posts on Migraineurs making choices for our health care and our lives.

How do we choose? We are faced with choices on a daily basis. We lose sleep over them; they feel momentous, life-changing.  Rarely are they an Indiana Jones moment:

  1. if I step on the wrong step it will crumble below me and hurl me into the rat/snake/cockroach infested pit, or
  2. if I stake all on drinking from the gold cup my eyeballs will melt and I will desiccate into a human husk, so that the 2000 year-old crusader can say “he chose unwisely.”

Most of our choices change our lives more gradually!

For those of us with Migraine disease and chronic illness, choices often revolve around

  1. what treatments to try, and
  2. how to manage to make our living.

Most choices in life are reversible; we can change our minds, have a chance to learn from our mistakes.  Usually there is no one clear right choice.  In medical situations we often wish there was one.  How about the doctor coming to us and saying, “Well, Ms. So and So, here’s the choice

1. If you take this course of treatment it will cost you $2500 and you will feel worse for 2 months, 3 days and 16 hours, but then you will lose 30 pounds, become a natural blond, your Migraines will cease forever and you will never age another day.

2. On the other hand if you don’t take the course of treatment your fingers will gradually turn to pretzel sticks and crumble away, your brain will become a giant chicken heart and eat Philadelphia, your best friend will never speak to you again, and you will have a Migraine every day forever.”

I don’t know about you, but I’d go for the treatment.  And I don’t even want to be a blond!

Okay, I’m being extreme.  I hope I didn’t lose you there in all my silliness; there really is a point.  It is rarely given to us to know whether we are making the right choice, before, during, or after.  We have to weigh our options, but then we just have to choose.

Before I had my first child I fell and herniated a disk in my low back, causing two years of back pain.  Then I had a difficult labor with an erratic pattern of contractions, wearing me out without making progress.  After 18 hours of labor, I chose to use pitocin, a synthetic hormone, to stimulate the labor, and the pitocin made the contractions strong and painful enough that I felt I needed anesthesia.  I had to choose between taking pain-killers and having an epidural (where anesthetic would be injected into the dura, or sack, around my spine).  With an epidural there was a chance that my disk problem could become worse, even to the point of permanent back pain.  With pain-killers, if I ended up with a cesarian section, I would need general anesthesia.  The choice was to be awake for my daughter’s birth and risk disabling back pain, or to risk being knocked out for her birth with no back complications.  I chose the epidural.  I did have a cesarian; I was awake; and I did not develop any back problems from it.

My husband and I will never forget when I was lying in the birthing chair, pitocin-induced contractions sending me into ever higher spikes of pain and exertion, trying to make a choice in the panting moments between.  We were 31 years old, and we felt like we became adults in that moment.  If I had ended up with disabling back pain, I don’t know if I would have said it was the right choice.  To be awake and hold Rachel in the moment after she came into the world was a joy I did not want to miss.  That was what I chose.  But who can say if it was the right choice?

The choice I made recently was to start on Migraine preventive medication.  I spent at least 6 months making that choice.  It was a choice I was considering for at least 4 years.  Sometimes a choice needs to stew on the back burner of our minds.  In that 6 months I:
•    Found a doctor I could trust (which took several tries and months of waiting for appointments);
•    Did a lot of on-line research, and read about other’s experiences with preventives;
•    Recommitted to my meditation and relaxation program;
•    Tried magnesium and B2 supplements;
•    Tracked my Migraine numbers; and
•    Talked about the decision with my friends on and off line, my husband, my family.

Eventually, the choice just felt clear.

I will be returning to this subject of choosing in several more posts in the near future – if you’ve read all the way down here I’ve kept you too long already!  What I’ll leave you with today is to say that those times when you must make that life-changing decision right now are rare.  We usually have some time to make our choices.  Use that time.  Let things simmer on the back burner.  Let your subconscious mind do its job.  Will you make the right choice?  Nobody knows.  But you can make the choice with much less anxiety in the meantime.

– Megan Oltman

Pretzel sticks image coutesy of Windell Oskay; image of window at Mesa Verde is by me to illustrate being between a rock and a hard place – Mesa Verde is all rocks & hard places.  And amazing.

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Posted in Managing, Medicine, Silliness | Comments (7)

How Am I? As Well As Possible, Thank You!

September 13th, 2008

AWAP has been making the rounds on some of the Migraine forums lately – so I googled it and got many choices:

Abused Women’s Advocacy Project
Any Word Any Page
Aftermarket Wholesale Autobody Parts
Animal Welfare Audit Program
All worthy choices, I’m sure, but…

I’m talking about As Well As Possible.  A wish for the chronically ill – not, “have a great day!”  But “have an AWAP day!”  Not “I’m feeling fine!”  But “I’m feeling AWAP!”  I sign off on notes and emails to my chronically ill clients and friends, “wishing you pain-free days and nights.”  It is my wish for them, my earnest wish, and it is my wish for myself.  But sometimes it’s unrealistic.  We must walk a fine line between powerful hope and attainable goals.  Between reaching for the stars, setting our sights high, and accepting the reality of our lives.  I work and strive for the day when my Migraines, and yours, are a thing of the past.  But if I expect that to be today, I may be setting us both up for disappointment.

When I was little, I was taught that when people asked how I am, I was to say, “Fine thank you, how are you?”  The explanation for that stock answer is that people are asking in order to be polite, and they don’t really want to know! Is that true?  Sometimes it is.  Every person I encounter in business, every acquaintance I run into in the grocery store, does not necessarily want to hear the details of my illnesses.  I don’t necessarily want to share and go into it with all of them either.  So what do I say?  I try to avoid saying “fine.”  I often say I’m okay.  Or not bad.  On those occasions when I feel great, I say I feel great.  (Hey, it does happen!)  But if I say I’m fine when I’m not, I’m perpetuating the invisibility of my illness.

With people in my life, I try to strike a balance between being real and being upbeat.

When we live with chronic illness it is very important to enjoy as much as we can of life.  To find the joy where we can.  And so for me to be AWAP means that I am living the best I can today, maintaining a sense of humor, being productive where I can, having as much fun as I can.  It means that I may be chronically ill but I am not overcome by it.

Sometimes my friends and relatives say, “How’s your head?” or “Having any Migraines lately?” or even “I hope you haven’t had any of those Migraines,” or “Migraines better?”  Of course people want me to be better.  I want to be better too.  When a friend is ill, we want them better.  What else can we wish them?  So I try to find an answer that acknowledges their caring, and acknowledges my reality.  Today I am As Well As Possible.  I am not in constant pain.  The on and off Migraines I’ve been having for weeks are off at the moment.  I have some energy and I am getting some things done.  My dishwasher is fixed.  My kids make me laugh.  The field is full of deep yellow goldenrod and deep purple asters.  I am grateful for my life.  AWAP

– Megan Oltman

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Posted in Advocacy, Communicating, Managing | Comments (8)

Can You See my Pain? Can I See my Pain?

September 8th, 2008

It’s Invisible Illness Awareness Week, a worldwide effort to bring together people who live with invisible chronic illness and those who love them.

According to the Invisible Illness Blog, nearly 1 in 2 Americans have some kind of chronic illness.  From heart disease to mental illnesses, cancer, lupus, chronic fatigue, Migraine and headache disorders and many others, people are suffering all around.   While our illnesses may be invisible, giving no outward visual signs, why are they so unknown to those around us?

The statistics on Migraine disease are staggering.

Given those numbers, why is this disease so misunderstood, un-researched, underfunded, and the treatment options so undeveloped?  Why do so many people, even doctors, think it’s “just a headache”? There’s enough for several more posts in answer to that question, but I think invisibility is one of the major reasons.

Think about the invisibility of head pain.  Unless someone is highly attuned to changes in our eyes and expressions, or the cue of hand to forehead, they will not know when we have a Migraine attack.  It’s not like they can see the hammer knocking us on the head!  Even more significantly, perhaps, it’s hard for others to understand how we might feel fine today, but be unable to get out of bed tomorrow.  It’s hard to understand the long term consequences of frequent or chronic pain.  Migraine can increase stroke risk, and Migraine disease can cause brain damage over time: this is recent knowledge.

There is much we can do to educate others, to explain to those around us, to rally for more research, to insist on accommodations at work and adequate treatment from doctors, emergency rooms, and insurance companies.  But I think one foundation of the problem lies in how invisible this illness even to ourselves.

Last week I practiced saying “I am chronically ill.”  I said it to a number of different people, and told it to myself in the mirror.   Big deal?  It is a big deal.  It is the reality of my life for most of the last 13 years, yet I have a very hard time accepting it.  I am a meticulous record keeper.  I keep a very detailed Migraine and Wellness diary where I track not only Migraines but my sinus infections, my fatigue, and my dizziness, among other things.  I can tell you that over the past 4 years, I have been sick, with my ability to function significantly reduced, 25% of the time.  It’s probably higher than that, because I have a lot of Migraines in the evening, but if I have worked and functioned most of the day, I have counted that as a well day.

I am one of the lucky ones.  Many chronically ill people are sick more than half the time.  Since I am in business for myself, I can set my work up to be flexible and take the time I need for myself.  My ability to meet deadlines and my income do suffer.  Imagine having a job, and needing to take 6 sick days per month.  That’s what my numbers translate to.

Those are the facts, and yet it is very hard to accept that I am chronically ill.  If you’re not sick every day, it’s easy to fall into denial again.  To forget that there are limitations to what I can do.  That even when I feel great I need to be very cautious and marshal my energy.   That things I used to do are not
available to me any more.  That I need to adjust the standards I have measured myself by.

I need to be as kind, forbearing, patient, understanding and loving towards myself as I would be to a friend who was chronically ill.  Why is that so hard?  I need to accept where I am without giving up hope, and while still striving to take better care of myself, get better treatment, do everything I can to be as well as I can be.

When I am caring for myself in this way (and I do manage it at times), it is easier for me to be real with the people around me.  To explain my illness, to help them understand.  I need to have my illness visible to me; then I can help make it visible to others.

– Megan Oltman

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Migraine, Chronic Illness and the Not So Happy Homemaker, or All in a Labor Day’s Work

September 1st, 2008

I do not claim to have ever been a great homemaker. I enjoy well organized space. I enjoy design, and
line, and tweaking the environment around me for comfort, beauty, and efficiency. So perhaps I am a perpetually frustrated homemaker, because these joys are rarely ever mine. I live in a state of clutter, disorganization, confusion and catch-up. Uh-oh, now I’ve told the truth. Will you ever listen to what I have to say again?

Wherever you start on the spectrum from neat-freak to pig-pen, Migraine and chronic illness will hamper your ability to get it all done. I remember a time before my Migraines and sinus infections became frequent, before chronic fatigue reared its ugly head, and, let’s face it, before I had children, when my home was tidy on a weekly basis, at least. When Danny and I first moved in together I wanted to get up on Saturday morning and get the housework over with, and then enjoy the rest of the weekend. He wanted to lounge around on Saturday morning and get to it later. Which generally meant we’d be cleaning at 5 pm, when we had plans to go out later, and we would do less than I wanted, and I would worry about it and not get to relax at all. But this is a blog about Migraine, right, not about relationships?  I thought that issue was difficult at the time. What I deal with now is of a different order of magnitude.

I have a generous, hard-working and willing husband who tries to maintain order in our home, with or without my help. He is also a fabulous cook and does most of the cooking. I have a nearly adult daughter who is a willing helper when she has the time, and a son who has come a long way with being helpful. I am also the one of the four of us who is not diagnosed with ADHD. This means I am the only one who can really multi-task. It means I’m the only one who notices a lot of the clutter. It means that I am the Captain of this house. So if the Captain is in sick bay, the ship may end up on the rocks.

I have had, this past 12 months, the worst year for Migraine and the year with the most sick days, since I began my Migraine and wellness diary 5 years ago. That means the house is in an advanced state of mess. It had never been tidy, but it’s worse than usual. Deborah at Weathering Migraine Storms posts about her craft projects and I feel jealous – I love crafting too, but it seems pointless to decorate when everything is a mess. The energy I’d like to spend on creativity, or on organizing, is so often taken up with the basics, dishes, kitchen counters, laundry.

But I have to stop and count my blessings. Unlike some Migraineurs, I can still work for a living. So if my energy and time is limited, and I spend it helping to keep a roof over my family’s head, I can’t fault myself for the state of things under that roof.

My advice to you, and me: cut yourself some slack. Do the best you can and take the time to enjoy life.  Keep blocking out your time in the calendar to make the most of the time you have, working from your priorities.  See More Time Management for Migraineurs: Managing the Time we Have for some more ideas on how to do that.  As for me, today I’m post-drome and having some vertigo. I am doing my best to make my way through a back-log of dishes (the dishwasher is broken) and fold the laundry, with plenty of resting time in between. Happy Labor Day!

– Megan Oltman

Dirty dishes image courtesy of Easternblot – eva.

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Posted in Managing, Musings, Tips & Techniques | Comments (2)

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