November 20th, 2010
I’m coming late to the party. It’s 3 days after the official Love Beats Hate event and I haven’t even managed to read very many of the posts – I’m working on it. But I figure keeping the love alive is not a bad thing to do. And I want to be part of the party.
What can I say? Perhaps nothing that hasn’t been said before. I love you bloggers and online health activists and I am honored to be among you. I was a busy person living my life when illness tackled me and brought me down. Life threatening allergies. Chronic Migraines. Crippling fatigue, which resulted many years later in a diagnosis of Fibromyalgia. Irritable bowel syndrome, with weeks of enervating stomach pain. On the hate side, I can truly say that I hate being sick.
I can feel very very sorry for myself. Even making this list brings a tear to my eye. But it’s not just the illnesses. It’s the years I spent fighting, not accepting, pushing myself way beyond my limits, thinking of myself as lazy and undisciplined, longing for the day when it would be all better. I neglected the people I love with my head in the clouds trying to build a different reality than the one I live in, trying to force the outcomes into a shape I wanted. I never paid enough attention to where I was, to my home, my children, my work. I thought that if I kept pushing, somehow I could make it all better. I regret those years. I listened to those who think that illness is a result of wrong thinking, that we can transform our way out of illness. I will not say that there is an evil intention in this type of thinking, but it led in my life to evil results. I felt guilty for my illnesses. I hated my illnesses, and myself for having them. I tried to ignore them and push past them. Until I was too sick to do it any more. And I finally found some doctors and therapists who could help. I recommitted myself to meditation and conscious relaxation, acceptance and love, and learned little by little to accept the highly sensitive, aching weary frame that I live in.
Three years ago I started participating in the online Migraine community, and then the larger chronic illness community. I had something to share, to offer, with the relaxation techniques I had learned, and the coaching skills I used professionally. I decided to create this thing called Migraine management coaching, and to go talk to others with my illness. I won’t say I haven’t had a contribution – I think and hope that I have. But what looked at first like a side benefit – the outstanding relationships I was forming with others who understood my life – turned quickly into the main event.
The darkest days of chronic Migraine, among the sickest times in my life, were lightened by the time I spent on My Migraine Connection, and blogging, and reading and commenting on others’ blogs. I became a part of a community, a loving, supportive, funny, vibrant community. I got such deep and caring help with some of my hardest struggles.
Then I discovered Facebook and a surprising thing happened – my chronic illness community and my other communities – family, friends, colleagues from the many parts of my life, all began to come together. When I post about pain or illness, many will comment who understand and are with me in the experiences, but the others in my life will also express sympathy, distress, let me know they are with me too, though they may not have my same issues. It has been enormously healing. I want to say I am sorry to all those I love, and who love me, who I neglected, or pushed away, or tried to force into seeing things in a particular way. I was running away from myself. It wasn’t until illness brought me to a standstill, until there were no more reserves of energy to keep pushing, that I became able to accept, and out of accepting, express, and explain, and have you get what my world is like.
After three years of working at it my Migraine disease has moved from chronic to episodic and I have long stretches of freedom from pain in the brain. I am back working full time, or close to it, at law and mediation. I wish that I could just help chronically ill people full time, but I had to get back to earning a living. I am exhausted by my work and can’t seem to think much at the end of a long day. My fibromyalgia and irritable bowel are activated much more often than they used to be by the stress and exertion of my life. So I don’t spend nearly as much time on this blog, or on forums or other blogs, as I used to. I miss it. I wish I could do more. But I do check in with my friends, on their blogs, on Facebook, on Twitter, and I am present every day to how I get by with a little help from my friends. I am lifted up and cradled by you. I love you.
October 21st, 2010
Have you heard the news? Botox has been approved by the FDA for treatment of chronic Migraine. I first heard it from Diana Lee at Somebody Heal Me, but it’s been in the press this past week. This is great news for many chronic Migraineurs. Health insurers who have been refusing to pay for the highly expensive treatment will now lose the excuse that it is not a standard, accepted treatment. The FDA approval probably doesn’t guarantee they will cover it, but makes it much more likely. Like most Migraine treatments, Botox doesn’t work for everyone. As I understand it, for some Migraineurs, the injections into specific points in their heads and necks paralyze muscles that otherwise would contribute to the triggering of Migraines. With FDA approval, the treatments will be available for a much larger group of sufferers.
I guess some jokes are inevitable. Just for the record, the injections are highly unlikely to be into the same spots in your face that would plump up wrinkles, unless you just happen to have a wrinkle on one of those trigger points. Sorry. But I just ran across someone joking about it, and it got my goat.
A friend of mine who is a M.D. and has a great understanding about Migraine, has been very supportive of me, and also happens to work in a company that manufacturers dermatological products (so you could see she has some professional interest in the topic) posted a link on Facebook to the FDA approval of Botox. I commented that it was great news. Another friend of hers (who I don’t know) commented after me, saying “suddenly, I feel a headache coming on. sign me up!” Okay, I don’t know if this woman is a Migraineur or not and I don’t want to go off half-cocked, but it put me on slow burn. First I kind of shrugged, then read it again and was annoyed and gradually I’m getting that agitated feeling in my stomach… that could lead to a Migraine, among other things.
I’m trying to get at my feelings. The implication that I read there is that it’s a joke that you could get Botox for a “headache,” that people should fake headaches in order to get cosmetic Botox treatments. It trivializes our condition, maybe completely unknowingly, but even so. I was inclined to let it go so as to not drum up trouble, but if I don’t take on an opportunity to educate, I’m not being true to myself. So I’m going to answer her. If you’re reading this post on Facebook, I already have.
Of course I’d love to really let loose, but I want to educate, not alienate, so here’s what I’m saying:
Migraine disease is a serious neurological illness which is one of the top 20 most disabling conditions world-wide. Chronic Migraine sufferers have Migraines 15 or more days per month. For some of us, Botox helps prevent or lessen the impact of some of the Migraine attacks. The Botox is not injected in places that would help anyone with their wrinkles. It may be surprising, or sound strange, but it’s not a joking matter. I don’t think you intended to offend, but please understand that your comment trivializes a very real disease suffered by 36 million people in the USA alone.
What do you think? Am I doing right by our cause?
October 20th, 2010
I am counting on some of you old hands at living with fibro to chime in on this one, okay? I believe I have had fibromyalgia for at least 15 years, and maybe for 35 years. I’ve only been diagnosed for a little over a year, though. My fibro seems to have grown a lot worse in that year as well. What I can’t tell is whether the fibro just seems worse because my Migraine disease has gotten so much better that I can actually notice the fibro now.
I think it is worse, though. Certainly the fatigue is nothing new, that’s a fifteen year old problem, which I thought was ME/CFS. It was raising the question of dealing with Chronic Fatigue Syndrome (CFS) with my headache specialist last year which led him to press my fibromyalgia tender points, and led us both to realize that it was fibro that was the issue. since then things I’ve been experiencing for a while have “clicked,” like how a slap on the shoulder or the teasing pokes my son gives me can really hurt, for a long time. Things that used to be just mildly uncomfortable or unpleasant cause actual pain now. What is new is the feeling that my aching arms weigh a ton and are likely to fall off. This is after a day of sitting up at a desk typing.
I’m finding this disease a hard one to learn to manage. I try to keep my activity level fairly steady from day to day, but if I do get a flare I need to rest for it to go away. Then I’m back to a very inactive state and have to slowly build up all over again. I always want to do many things when I do have the energy for them, but I can cross the line to overdoing so easily.
Saturday, for example. A couple of our dearest friends were in NJ/NY for the weekend – in from Minnesota. It gave us the impetus to do a deep cleaning of the downstairs – one it had needed for a long time. But the day started at 6:30, because Adam took the PSAT today, and then we cleaned for several hours until they arrived. We had lunch and lots of talk, a too short wonderful visit of a few hours. I did take a nap after they left, but as the sun was starting to go down I was seized with the desire to be outdoors in the bright chilly Autumn day, and walk in the park. (What’s the good of living in the best spot in our little town if I don’t get out and enjoy it?) So I took a good 20 minute walk through the paths in the fields. Then I sat on the bed, propped up on pillows, blogging. There was still laundry to be done but I had expended about as much muscular effort as I should for one day (if not more). I ached a bit, but who knows how much more would have set up a flare? It’s very challenging.
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.
March 7th, 2010
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?
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!
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!
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.
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!
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!
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