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Posts Tagged ‘Migraine disease’

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

Tags: disability, fibromyalgia, MIDAS, Migraine disease, Social Security disability
Posted in Managing, Musings, Uncategorized | Comments (0)

Spring & Hope

March 7th, 2010

Hope springs eternal in the human breast;
Man never Is, but always To be blest:
The soul, uneasy and confin’d from home,
Rests and expatiates in a life to come.

-Alexander Pope,
An Essay on Man, Epistle I, 1733

Hope springs. Spring and hope. Spring is sprung. Today was the second of two sunny, 50 degree plus days. The snow is finally melting away and snowdrops are blooming in the yard. Danny and I took a long walk, my second in two days, and talked about what we want to do in the garden this year. And with the improvement in my Migraines and my steady new work schedule, it’s more likely that I will be able to get out and do some of the work.

There’s plenty of yard clean-up to do, but our snow’s not all gone yet and the ground is mushy. We spent a while working on getting a large broken limb out of the tree overhanging our driveway - a limb that threatens to fall on our cars with every strong wind. A ladder, a pruning saw, Danny’s ingenuity and an apple-picker swung on a rope later, he pulled the monster down. It hit the ground with a resounding thud that made me very glad no car windshields were below it. Or human noggins either. What’s amazing is how alive I felt, and how enjoyable it can be to tackle a physical problem like this, out in the fresh air.

I don’t know how much we’ll get done of our ambitious plans - I still have a few days of Migraine black-out each month, and I am battling constant soreness from my fibromyalgia. Yesterday I was more active than I’ve been for a while - kitchen clean-up, multiple loads of laundry and a 40 minute walk around town. I ached all over and slept badly. But I set out to match yesterday’s activity level today - knowing that if I give in to the aches and stay inactive they’ll just get worse.

Danny said when we came in from the yard - “It’s a different kind of tiredness - it feels good.” I remember that feeling, but I don’t really experience it any more. All tiredness makes me ache all over, be it physical, mental, emotional, indoors or out. But my world does open up with the warmer weather. I feel like the whole world has expanded. I want to be out and doing, before New Jersey’s hot humid summer comes and shuts me down again.

To all of you with chronic illness - wishing you hope this spring, and that you may enjoy the fresh air and growing things. What do we live for, what pulls us forward, but sublime and ridiculous hope with each new day?

- Megan

Tags: Alexander Pope, fibromyalgia, gardening, hope, Migraine disease, New Jersey, Spring
Posted in Musings | Comments (0)

Move a Muscle, Change a Thought

June 12th, 2009

Move a Muscle, Change a Thought. I first heard that in a self-help program many years ago. It’s easy to stay stuck in a certain way of thinking, to stay down and confused and immobilized when we stay in the same place, looking at the same things. Get up, move, do something different, move a muscle, change a thought. There is now all kinds of scientific evidence to back up this idea, of the benefits of physical activity and exercise. I’m not just talking about working out or even taking a walk, though. Just do something to shift, move, change your perspective, take some action, get something moving.

This is as true for those of us with Migraine disease and chronic illness as it is for anyone else. Maybe more so. When we are in chronic or frequent pain it’s hard to act on this. I don’t deny it. But as hard as it is, it’s very important. It may be that walking to the mailbox is as far as you can go. It may be that sitting up for an hour instead of lying down is a major challenge. Do it, if you possibly can. We need accomplishment in our lives to make our lives feel worthwhile to us. We need goals, even tiny ones. We need to feel we are contributing, even if the extent of the contribution is to wash 3 of the dirty dishes. There will be those times when we cannot do anything but endure our pain, or when attending to our healing is all we should do, but when it is not one of those times, it is time to be doing something.

We also need the shift in perspective. When you stay in one place for a long time, your world can close in. You can’t see your way out of problems. Moving your body changes what your eyes see, it helps your blood flow, it helps you breathe more fully, and it opens up your thinking.

I just completed the set of BREESE relaxation recordings which are available on the products page here on Free my Brain. The final BREESE Breathing recording teaches a breathing and movement technique I use to help get the breath and blood moving and the whole body relaxed. You can use this when you have mild head pain, or in the post-drome phase after a Migraine to start moving again and aiding your recovery.

Another technique taught me long ago is to take a green break. Plants produce the oxygen we need to survive, they also produce negative ions which soothe us. Get outdoors and be with a green growing thing. If you can’t get out, spend a few minutes with a house plant. When all else fails, look out a window at something green, or even look at a picture of trees, fields, the natural world. Get up, leave the house, cross the room, or even roll over and contemplate something green. Let your worries flow out of you into the green growing world. Just as plants use our carbon dioxide, the waste from our breath, to produce oxygen, let the waste of our minds, our worry and anxiety, flow out into the natural world and be transformed.

Life rewards action. There’s another great saying, and I don’t know where I first heard it, but I have found it to be true, for me and for the people I work with. Here in New Jersey we have had several weeks of almost non-stop rain. It is gray, damp and chilly, except when it’s gray, damp and muggy. Although I don’t trigger at every barometric pressure change like some Migraineurs, I did eventually get a Migraine over the past few days. It was very hard to get up and move. But once the active pain phase had passed, and during a break in the clouds, when it was just drizzling instead of down-pouring, I went out for a walk. I walked gently, doing my relaxation breathing in rhythm with my steps. I came back more optimistic, with the fog of post-drome beginning to lift. I played a game with my kids; I began writing this piece.

Do what you can to get in action. Little actions can make a big difference. Roll over, shift your perspective. Move a muscle, change a thought. Let me know how I can help!

- Megan

Walk in the light image courtesy of H. Koppdelaney; Rain shower image courtesy of AlmazUK.

Tags: chronic illness, exercise, getting in action, Migraine disease, self-help
Posted in Managing, Musings, Tips & Techniques | Comments (0)

Headache Carnivals and Awareness

June 8th, 2009

It’s a big week in the world of headache - first of all it’s Migraine and Headache Blog Carnival time again, with this month’s topic of “What people don’t understand about migraines & about what it’s like to live with them” posted over at Somebody Heal Me. Lots of great posts, both on and off topic. If you haven’t checked out The Headache & Migraine Disease Blog Carnival before, it was been created to provide both headache patients and people who blog about headaches with opportunities to share ideas on topics of particular interest and importance to us.

But even bigger news is that it’s National Headache Awareness week, sponsored by the National Headache Foundation.  Educational events are going on throughout the country this week to raise awareness of Migraine and other headache disorders.  A great new tool on the National Headache Foundation web site is Headache U, an on-line resource where you can look up your experiences with headache, create a personal headache profile, and get matched with the right resources for you.

A great week for educating both ourselves and the other people in our lives about Migraine Disease and Headache Disorders!

- Megan

Tags: blog carnival, headache disorders, Migraine and Headache awareness, Migraine disease, National Headache Awareness Week
Posted in Advocacy, Communicating, Weblogs | Comments (1)

May Headache and Migraine Blog Carnival

May 12th, 2009

The May Headache & Migraine Disease Blog Carnival is posted at Somebody Heal Me.  Diana Lee created the carnival to provide headache patients and people who blog about headaches with opportunities to share on topics of interest and importance to us.

This month’s carnival was on the topic of “Talk about where to find support: Where do you find it & where can other migraineurs find it?” It’s a very important topic - Headache disorders and Migraine disease are very isolating and we need support! Head over to Somebody Heal Me for a lot of good reading.  Enjoy.

- Megan

Tags: blog carnival, Migraine disease, migraine support, Weblogs
Posted in Managing, Weblogs | Comments (0)

One Million Dollars for Moms for Migraine? That shouldn’t be Hard!

May 8th, 2009

The National Headache Foundation has a great idea.  There are at least 36 million Americans who suffer from Migraine disaease.  (Yes, look around.  That’s one out of every 12 people you know!) If just one million of us gave a dollar each, that would raise a Million dollars for Migraine research!  Did I mention that Migraine research is so underfunded that the research is about 30 years behind any other major disease that impacts this many people?  Yes, I did, but that’s okay, I’ll mention it again.  Please go back and read what we were lobbying for at Headache on the Hill.

Only one out of 36 of us has to participate to make this work.  Are you game?  Go on over to the National Headache Foundation and give just one dollar!

Teri Robert lets us know about a lovely added twist, just in time for Mother’s Day!  Have a mother or grandmother with Migraine Disease?  Are you married to one?  Is your sister one?  How about giving one dollar for Migraine research in her name - a lovely way to recognize her on Mother’s Day!  Read Teri’s post The Perfect Affordable Gift for Migraineurs here.  The National Headache Foundation is launching the Migraine Million Campaign just in time for Mother’s Day - to raise awareness that this is a genetically based disease.  Talk to your Mom about Migraine disease.

- Megan Oltman

P.S. Six percent of men have Migraine disease too. You can give a dollar in the honor of all those Mother’s sons!

Tags: Migraine disease, Migraine research, National Headache Foundation, Teri Robert
Posted in Advocacy, Current Affairs | Comments (0)

Help Us Get Better Treatment

February 7th, 2009

Most of the time we do what we can to manage our own Migraines and support others, but don’t feel like we can have much of an impact on the disease itself or our treatment options. Coming up on February 24th is the Alliance for Headache Disorders Advocacy’s (ADHA) Annual “Headache on the Hill” - a day of advocacy on Capitol Hill where we will be lobbying our Congressional representatives for a larger share of National Institutes of Health dollars for Migraine and Headache Disorders research. I’m very excited to tell you that I will be in Washington along with Teri Robert and a number of leading Migraine specialists and advocates to speak with my Congressman and Senators. Read some more about what Teri has to say about it here: We Need Your Help to Get Better Migraine Treatment.

So, here’s what happens in the meantime. The ADHA will need your help in writing to your representatives sometime soon, possibly before Headache on the Hill, to inform them about the issues and ask them to lend their support. Could you please go over to the ADHA site today and sign up for their mailing list?  This way you will know when it’s time to write your representatives. Why are Migraine and Headache Diseases so under-represented when it comes to our National Health dollars? Probably because we haven’t had the kind of organized advocacy that other diseases have had, but we can change that now!

I’ll let you know here when it’s time to write to your representatives, but please sign up with ADHA today so that you don’t have to rely on me! Thanks for your help!

- Megan

Tags: action alerts, Alliance for Headache Disorders Advocacy, Headache on the Hill, migraine advocacy, Migraine disease, Teri Robert
Posted in Advocacy, Medicine | Comments (0)

Telling the Truth about Your Disease

January 15th, 2009

Here’s a New Year’s Resolution for you: Tell the truth about your disease this year! How many of us are walking around in a state of denial, not having told the truth to ourselves about our disease, or about what we need to do to manage it? How many of us are in a state of conflict, hurt feelings, or even losing relationships with the people in our lives who don’t know the truth about our disease either?

What do I mean by telling the truth? It may be that many of us would be better off if we didn’t have to work, or care of our families, if someone else would care for us, or pay the bills, but we just don’t live in that reality. Telling the truth doesn’t mean you have to deny your reality, or not deal with it. Quite the contrary, your reality may be that you have to work, and care for your family, but you can’t care for your home to the standards you have always had, or you can’t work the kind of hours you once expected of yourself, or you can’t micro-manage your family members but have to allow them to make mistakes and muddle through. There may be many things that you have to let slide, and telling the truth may involve reminding yourself that if you exacerbate your disease through overwork, lack of rest, not caring for yourself, then none of the other things you value will be possible. For many of us, the truth is we must put ourselves first, and that isn’t some kind of nasty self-indulgence, it’s not “No I can’t take care of my child I have to watch tv and eat these bon-bons,” it’s “I must care for my well-being or there will be none left of me to care for others.” It means put on your oxygen mask first on the air-plane or you will both be dead!

Denial is what has us clean one more thing instead of resting, or ignore the migraine twinges instead of taking the medication to treat early. Denial is what has us try to be super-women and men, has us go on hosting huge parties in order to not disappoint the family, or do whatever we believe is expected of us, at the expense of our well-being.  Denial is lying to ourselves about our own disease.

This may sound harsh, and believe me if you find yourself in a state of denial you have all my sympathy. I find myself there from time to time as well. It is human, and it will happen. The key is to practice telling the truth, to have it become a habit. You may not want to answer “How are you?” with complete truth in every situation - there may be reasons not to do that at work or in some social situations. But practice telling the truth about who you are to yourself, and to someone! Come here and tell it to me, in a comment. Sign up for the e-course The Six Keys to Manage Your Life With Migraine (in the upper right corner of the page) and tell it to me there. Register for a relaxation or support teleclass and talk about it there. Go to a Migraine Forum and talk about it. Find a friend or two you can tell. Write it in a journal, or in your own blog. But practice telling the truth.

And remember that there are people in your life who need to know the truth about your disease as well. You may want to practice telling that truth to yourself first, but your spouse or significant other, your parents or children or siblings or best friends, need to know some basics.

• They need to know if you are a Migraineur that you have a neurological disease which you cannot control.
• That when you have a Migraine attack you experience extreme pain, nausea, dizziness, whatever the particular symptoms are for you, and that you must treat it and avoid light, sound and stimulation until it passes.
• They must know something of the dangers of leaving a Migraine untreated.
• And they need to know that you are not doing this on purpose, to avoid being with them, or work, or obligations, that you wish you didn’t have this disease, that you appreciate everything they do for you, and that you need their love and help and support.

Here’s a link to a great letter Teri Robert wrote to share with the people in your life to help them understand Migraine disease. I can’t promise you that every person in your life will understand and support you. If you can keep the conversation about your disease and asking for their help and understanding, and keep any hurt or accusations about past actions out of it, most people are more receptive. I can promise you, though, that it is important to take this step. More hurt feelings and lost relationships come about from not trying, from failing to communicate, from wishing, hoping and expecting the other person to understand. There’s no way around communicating, scary though that may be.  If I can support you, please let me know.

- Megan

Heads together image courtesy of Vera & Jean-Christophe; conversation image courtesy of John Wigham.

Tags: Communicating, denial, Migraine disease, self care, telling the truth
Posted in Communicating, Musings, Tips & Techniques | Comments (2)

It’s Blog Carnival Time Again - What Keeps You Going When You’re Suffering.

January 14th, 2009

Kudos to Diana Lee who got her act together in the New Year to get the Blog Carnival out right on time - yours truly is still adjusting to a new schedule and not even getting over here to post very often, so you won’t see an entry from me in this month’s carnival! But it’s a great topic - What Keeps You Going When You’re Suffering. So pleaase head on over to Somebody Heal Me for the January edition of the Headache & Migraine Disease Blog Carnival for some great reading to keep you going. I will be heading over myself for some reads on such topics as yawning, sleeping it off, revenge, and new Migraine drugs, as well as other coping strategies! See you there!

Generally speaking, a blog carnival is a collection of links to a variety of a blogs on a central topic. The Headache & Migraine Disease Blog Carnival has been created to provide both headache and migraine disease patients and people who blog about headache disorders with unique opportunities to share ideas on topics of particular interest and importance to us. Visit the link to this month’s carnival for a collection of informative entries on the theme of What Keeps You Going When You’re Suffering.

- Megan

Tags: headache, Migraine disease, Weblogs
Posted in Managing, Tips & Techniques, Weblogs | Comments (0)

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!

Tags: autoimmune disease, chronic illness, Migraine disease, Rosalind Joffe, women, work
Posted in Books | Comments (0)