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Posts Tagged ‘disability’

Who You Calling Disabled?

June 5th, 2010

I hesitate to call myself disabled. I work 25 hours+ a week at a demanding job, I do get out and see people, sometimes, and I’m down to only 3 or 4 days a month in bed. Most days I can wash the dishes and straighten up a bit, more than half my days I get some exercise, many days I can manage the laundry.  I’m down to 5 to 7 Migraine days a month, from 12 to 20 a few years ago. Although I have some fibromyalgia pain many days, days like today when I feel wrung out and ache from head to toe don’t come more than 2 or 3 times a month. So who’s calling me disabled?

I push forward through my life with a great deal of determination and most of the time I confidently expect to get better and better. I have learned so much about how to take care of myself, how to manage my various conditions, and I’ve really improved so much. Days like today, where all I can manage is some reading, some hanging out on line, some tv, when I travel from the bed to the armchair to the bathroom to the kitchen, and that’s a major undertaking, days like today can fill me with despair. I may never get any better than this. I have to accept that possibility – not that I won’t keep on getting up and being positive (mostly) and working striving and pushing (and breaking down when I push too far). But maybe this is as good as it gets.

I am researching Migraines and Social Security Disability for an article I’m planning to write. I encountered the blog of a disability law firm who have helped a number of Migraineurs to get their disability recognized, and compensated. Here’s what struck me. In writing up a Migraine Disability case study, Lawyer Jonathan Ginsberg recounted that the vocational witness called in his client’s case testified that although she felt the claimant could do light duty, low stress work, that no jobs existed that would allow her to be absent 4 to 7 days a month. It’s hard to do this kind of research and really stay detached, and reading that I thought, wow, I could easily need to be absent 4 days a month! The fact that I work less than full time, and for a flexible and understanding boss, makes it possible for me to switch hours around and avoid some of those sick days. But I would be disabled under the same criteria that got the woman in that case granted disability benefits!

Then there’s the MIDAS scale. MIDAS is the American Headache Society’s Migraine Disability Assessment Test. A year ago my MIDAS score was 57 – Which is “Grade IV Severe Disability.” I have been retaking the assessment every few months, and I am down to a 30. Great progress! Guess what a 30 is?  “Grade IV Severe Disability.”

I am not knocking my progress, really I’m not. I recently had a reader write in and ask me how to take back her life from Migraine. That’s certainly a phrase I’ve used a lot. Having 5 to 7 Migraine days a month is incredibly much better than having 12 to 20. Being proactive, recognizing our sensitive nervous systems and caring for them, looking at the areas we can impact and working on them, all of these things do make a difference. I am doing better all the time, building up my stamina (though slowly), and managing these days to earn somewhat of a living, which is nothing to sneeze at. But I felt I needed to tell this woman, you can take your life back in the sense of being in charge of your life, but that doesn’t mean you can make the disease go away.

There come those days, like today, when I slam into the brick wall of my own limitations. I worked a long, hard, stressful week this week and today I woke up feeling like I had been pushed through a strainer. Do any of you recognize that one? I’ve felt it on and off for many years, at least ten, and now I recognize it as a sign of a fibromyalgia flare. I feel strained, like my nerves and muscle fibers have been stretched, shoved, pushed, shredded, sieved, including the nerves in my temples that start the Migraines. Days like today feel blank, wasted, and I cried this morning at the prospect of a life ahead filled with days like this.

My disability is invisible, at times even to me, but it’s there. I will keep on striving. And I also need to be with what’s so, that this is who I am. I am this person with a hyper-sensitive nervous system, I do need days of recovery from just the normal everyday days of life.

I know I’m incorrigible, but I have high hopes for tomorrow.

- Megan

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Posted in Managing, Musings, Uncategorized | Comments (0)

Clean up, or Rest and Recover, How Do we Choose?

July 23rd, 2009

Diana Lee wrote a compelling post recently about the felt need to keep her house clean when she is home on total disability – called “I’m So Lazy: Ways We Trick & Abuse Ourselves“.  I could really identify with those undermining tapes that play in our heads, telling us that whatever we are doing, and however sick we may be, we could and should be doing more, and better, and keeping up appearances!

Diana’s post inspired my theme for the Free My Brain Migraine Managment newsletter on this month. (If you’d like to recieve the newsletter you can sign up in the Six Migraine Keys box in the upper right corner of this page.)  Here’s what I think about how to choose:

Putting our health first is a mantra, not a rule. A mantra is something we repeat to ourselves and allow it to slowly sink into our subconscious minds, informing our actions. A mantra can be a question or an inquiry
that we live inside of, always asking ourselves, “What would it mean to put my health first, today, in this situation?”

How, in the face of all of life’s demands, paying bills, maintaining a home in some semblance of order, raising children or caring for others, do you put your health first?

Use putting your health first as a mantra and it won’t give you a hard and fast answer in every situation, but it will give you some guidance. Repeat “I am putting my health first,” as you walk, as you meditate, as you go to sleep at night.

We can’t avoid every Migraine, and sometimes we will choose to work, or do housework or other tasks, even though it triggers an attack or worsens our pain. It is not a perfect world and we can’t magically have all our needs and obligations taken away because we are sick. Part of putting our health first must be to forgive
ourselves in those situations. We must forgive ourselves when we do the task to the detriment of our health, and we must forgive ourselves when we can’t do the task because of our health. You will never get this perfect. We are blessed or cursed with a sensitive nervous system that will go haywire at times, whatever we do. Guilt is essentially unhealthy! “I am putting my health first, and I forgive myself!”

If the mess in the house is driving you berserk, as so many of us relate, try to break the jobs down into tiny pieces. I try to pick up, put away, clean or deal with three things every time I walk into a room. Just three. This way the incredible mess gets dealt with, or at least maintained, a little at a time without wearing me
out. And prioritize, prioritize, prioritize. What’s more crucial today, clean underwear or paying the mortgage? (What? Both, of course!) Maybe you could rinse out two pairs of undies in the sink and pay the bill, leaving the bigger laundry task for tomorrow.

Remember – even healthy people will die with full to-do lists! And if you are just lying down, putting your health first, you are already doing the most important thing. Leave me a comment and let me know how your choosing is going today!

- Megan Oltman

dirty dishes image courtesy of Easternblot – eva

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The MIDAS Touch

April 5th, 2009

I recently took a MIDAS (Migraine Disability Assessment) test, and the results were enlightening.   The MIDAS test was developed by Richard B. Lipton, MD, Professor of Neurology at the Albert Einstein College of Medicine, New York, NY, and Walter F. Stewart, MPH, PhD, Associate Professor of Epidemiology at Johns Hopkins University, Baltimore, MD.  It provides an objective measure of how much your Migraines disable you, or impair you from work and acitivities of daily life.  It is a useful test in several ways.  Many Migraine and headache specialists make use of it to determine how you are affected by Migraine disease, and to measure your progress in treatment.  The test is also useful if you need to build a body of evidence for a disability benefits application.  You can find and take the MIDAS test on line at the American Headache Society web site, Achenet.org.

In addition to being helpful in your treatment, the test may be helpful to you personally, in better understanding the impact of your Migraines.  The test has you look back over the past three months and count:

due to Migraines.  Then it asks you for the number of days you had head pain, and the average severity of your head pain.  After you fill in all these numbers, the web site will calculate a score for you, which will indicate mild, moderate or severe disability due to Migraine disease.  Taking the test again on later occasions will provide an objective measure of how your treatment is working.

MIDAS is not brand-new, but my headache specialist does not use it so I had not taken it before.  I do, however, keep a very detailed diary, which is necessary to do this test.  If you haven’t kept track of how many Migraines you had, when, how severe they were and how they affected you, you won’t be able to complete the test.  Here at Free my Brain we will have a diary available for you soon.

What I learned for my self is that I am considered severely disabled by my Migraines.  This might surprise many of the people who know me, as I am up and functioning most days.  I have most of my Migraines in the evenings.  This means, however, that I have virtually no life when it comes to socializing and leisure time, and it also means that I must constantly choose between work and family, work and household tasks.  I have to earn a living, which is a struggle, so I don’t have as much time with family as I would like, very little time with friends, and as for household tasks, ha!  Reading my MIDAS results, you could predict the layer of dust in my house!

I suppose the test confirmed things I already knew.  It is a kind of validation, though, and it helps me focus on what I need to work on.  I need to be vigilant about my lifestyle – getting enough rest, doing my relaxation practice every day, working with my doctor to find the right preventive regimen for me. I need to maximize my health so I can do my work, be with my family, and then if I have a little energy left worry about the house! The MIDAS touch? Keeping that focus is pure gold!

- Megan

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Headache on the Hill

February 25th, 2009

I spent the day yesterday doing something I’ve never done before – lobbying Congress.  I’m not entirely sure I would ever have predicted that I would lobby Congress.  It was a great experience, and one that I’m sure will take me several posts to process and tell you about.  But I can at least get started.  The Alliance for Headache Disorders Advocacy (ADHA) is a wonderful group of doctors, advocates, writers and researchers who are fighting for better headache care for YOU.  I arrived in DC on Monday for a training session put on by the AHDA and learned some key things about the underfunding of Migraine and headache disorders research, and about how to lobby.

Nearly 40 of us spent Tuesday on Capitol Hill speaking to legislators and legislative aides.  I visited two senators and three congressmen from my state, along with another Migraine sufferer.  We were requesting that they add language to the 2010 appropriations bill which will direct the National Institutes of Health (NIH) to spend a larger share of their funds on Migraine and Headache Disorder research.

Here are some of the things I learned, straight from the AHDA fact sheet which we shared with the legislative aides:

Headache Disorders are the most prevalent neurological disorders.  This year:

US costs for headache disorders this year will be:

Migraine is extremely disabling, resulting in:

What has the response of the NIH been so far?  The NIH is responsible for funding, with our taxpayer dollars, the basic research that makes medical innovation possible.  So far the NIH funding for research on headache disorders is less than $13 million annually which comes to less than 0.05% of the NIH budget. Research of NIH funding relative to disease burdens (the impact of a disease on society, including prevalence, economics, disability, and mortality, as discussed above), shows that a fair share of funds for headache disorders (compared to other diseases with similar disease burdens) should be at least $103 million annually.

We got a good reception, particularly from our senators’ aides.  There is more work to do, but I think we are making an impact.  You can make an impact too.  Go to the ADHA site and sign up for their action alerts.  On Monday, March 2 we will be asking you to email your congressional representatives, asking them to sign on to the language directing the NIH to do the right thing with regard to headache disorders.  If you sign up for AHDA action alerts today, taking action next week will be as easy as a couple of clicks.

- Megan

We can make a difference!

US Capitol image courtesy of Kim Baker.

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Posted in Advocacy, Current Affairs, Medicine, Science, Uncategorized | Comments (9)

My Brain Hurts!

January 23rd, 2009

Do you remember the Gumbies from Monty Python?  “My Brain Hurts!” “Oh, no, Mr. Gumby…” “I’ve got a piece of brain stuck in my head and it hurts…” My cousin and I used to quote this at each other in our teens, and laugh hysterically (Mike can do a mean Mr. Gumby impression). Little did I know that a few decades later “my brain hurts” would become such a refrain for me!

I have never seen “thinking too hard” on any list of Migraine triggers, and I’m dubious about stress. As I’ve discussed here before, stress is officially considered an exacerbating factor in Migraine, not a trigger. So I don’t know whether the experience of “sparks are about to come out of my ears” has any physiological basis or not.  Someday I may do some research and see what kind of scientific explanations there are for this phenomenon, but not today.

Today is a Friday. Fridays my brain has been working hard all week and I either give it the final push that sends it straight to Frigraine-land, or I get into an extended case of the sillies. I realize this is a tautology. I can’t tell you whether thinking too hard is a Migraine trigger because I can’t think that hard because that might trigger a Migraine. Does that make any sense? Probably not, but we’re going to have to live with it! Look I’ve been drafting an estate plan, researching corporate formation, reading up on the relaxation response, attending a mediation discussion meeting, giving a marketing talk, writing a migraine management newsletter, and trying to remember algebra. Among other things. If I think much harder my head will explode. I’m pretty sure of that.

A friend copied me on an email this week, introducing me to her disability lawyer, so that I can speak to the lawyer about her case. One of the things I am interested in is helping Migraineurs and others with invisible chronic illness to get disability income if they need it. Anyway, the friend closed the email by saying she was impressed at what a professional sounding letter she can still write, though it had given her a Migraine to do it! So I’m not the only one who finds that mental effort makes my brain hurt.

As I have gotten back into legal work lately, I have been using synapses in the ole brain-bucket that have been in disuse for a number of years. I don’t know if the Migraines I’ve had over the past decades have any effect on my cognitive functioning, or if it’s just those darned decades themselves doing the job. I’ve been encouraged to discover that even though I can’t always think on my feet and recall immediately how to solve a problem, if I leave it alone and come back to it everything seems to fall back into place. I’ve done things I haven’t done in 10 years, things I haven’t done in 20 years, and this week had to dust off some math skills I haven’t used since high school!

This is the good news, but there have been many panicked moments in between when I felt like my brain was short-circuiting, when I actually physically felt pressure mounting in my head, when I thought sparks were going to come out my ears. What is that? An over-active imagination? I don’t think so. I don’t have any studies to cite for you, but when I think my head is going to explode, I think it’s time to give the brain a break.

Right now my brain hurts. Just a little bit. I’m going to take a break after I write this, and do my relaxation breathing, then put on my boots and take a little walk in the melting snow.  I may manage to avoid a Migraine tonight. I have to say I’m encouraged by the resiliency of this organ, this thinking organ that has been ailing, and aging, and working hard, that I need to earn my living and to see me through all the years of my life to come. I also need to remember that like any other part of me, I can exercise this brain, but it also needs its rest and relaxation, it needs both to stretch and to recover.

- Megan

There’s a piece of brain stuck in my head. Thank God!

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Posted in Managing, Rant, Silliness | Comments (4)

Handling Migraine Challenges: Helping Others Understand

July 19th, 2008


I’ve been asking e-course subscribers* what they find to be the biggest challenge in managing their Migraines.  Many of you have responded.  While I’ve written individually to everyone who responded, we all have so much in common that I wanted to share some of what I’ve gathered from your responses.  This is kind of Megan’s Dear Abby for Migraineurs.

We all know that we are challenged in many ways by Migraine disease, but the majority of subscribers included something along the lines of “helping others understand.”  How do we help others, the non-migraineurs who are important in our lives, to understand our disease, how it effects us, what we can and can’t do about it, and how it will effect them?

In reading all your responses, I see two issues in helping people understand.

The first is coping with those who judge us.  “Oh it’s just a headache she’s being a baby.”  “Oh so you have another of your little headaches?”  “Why do you always have a Migraine when I need you to do something?”

People have all kinds of reasons for judging.  Sometimes they want to feel superior.  They may want to distance themselves from you, your problems, your pain.  It’s almost a superstition at times; if they don’t sympathize, if they don’t believe in your pain, they can pretend it has nothing to do with them, that nothing like this can ever happen to them.  Some disability advocates refer to the non-disabled as “TABs” – standing for Temporarily Able-Bodied.  A potent reminder that disease and disability can happen to any one of us.

What can we do with those trying to feel superior?  We can think of nasty responses to put them in their place, and that can be a fun exercise when we’re angry.  The only thing I think is really effective is to speak our truth – tell the truth about what it’s like for us.  Some of those people will hear.  Some of it will sink in.  This is more about Coming Out of the Migraine Closet.  And if these people are not important to us, how much do we really need to do?  We can choose how far, and when, we want to be advocates, and we can recognize that not everyone will understand us, not everyone will be our best friend.  The job of advocacy takes a long time, and while I believe in educating people, it’s okay not to face down every single person every single time.

When important people judge us, the people that matter in our lives, I believe they do it out of pain.  There is the pain of what they lose to Migraine disease.  Our companionship, having fun with us, our help, our ideas, our input.  Our work and productivity.  There is the pain of seeing us in pain.  Of wanting to help. Particularly in the case of parents and life partners, there is the pain of wanting to be able to fix it, make
it all better, make it go away.  The pain of their powerlessness in the face of this disease.  When we can’t face pain, or understand it. we look for someone or something to blame.  “Why can’t you take better care of yourself?”  “It’s all in your head.”  “You have to learn not to stress out.”

The answer is in communication.   If people care about us, it’s worth doing whatever it takes to help them understand.  To sit down, at a time when no one is upset, and tell them what it’s like for us.  Give them information they may not have about this disease.  Teri Robert has a great resource, Understanding Migraine Disease and Migraineurs, which is a letter you can give to those who don’t understand.

But this brings us to the second issue, which I suspect is actually a bigger issue than what the others think.  First, before we can ask them to understand, we have to understand ourselves.  I think this may be the biggest ongoing challenge.  We have to understand, and accept, that we have a disease.  We didn’t choose it.  We didn’t cause it.  We may be scared, confused, upset, frustrated, worn down and in pain.  But we are not lazy, we are not malingering and we are not making it up.

Even more of you wrote about your worries about effecting others than about actual judgment from others.   “Feeling like I’m a burden on my family.”  “This disease affects everybody around me and it’s not fair. Neither for me nor for the others.”  “Having to stay in bed and my hubby having to take over.”  “I want my clients to be able to depend on me but sometimes I cannot be there and that really bothers me.”

We want to be useful, to be helping and participating with those we care about.  The first thing we have to do is to accept that we have a disease that will interrupt our lives, take us out of the action, make us rely on others.  Inside of acceptance, we can begin to see how we can help, what we can do.  Inside of understanding, we have options.

- Megan Oltman

*The Six Keys to Manage your Migraines and Take Back your Life – sign up for this free e-course in the upper right corner of this page.

Writing pen image courtesy of Toshiyuki IMAI; pointing finger image courtesy of Lisamarie Babik.

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Posted in Advocacy, Communicating, Managing | Comments (5)

Coming Out of the Migraine Closet

April 18th, 2008

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!

Closet image courtesy of Matthew Blank

ADA Road to Freedom image courtesy of Jay Wilson

Cave exit image courtesy of David Wilmot

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