slowing down

If my Migraine disease has taught me anything - and continues to teach me anything - it's the value of slowing down.

We talk about slowing down all the time when we discuss chronic illness. Being chronically ill requires us to reserve our energy for those things that really matter, to evaluate what we can and cannot do based on how our bodies feel. While initially upon being diagnosed we can fool ourselves into thinking we can still operate our lives at "normal" speed (whatever that means), eventually our bodies demand us to make some hard decisions.

On an even more basic level than that, time slows down with pain. My Migraines and IIH together mean I'm in constant pain. Coping with that pain can slow down time - can you remember a time when a painful injury made it feel like an eternity until that pain was relieved? Chronic pain has a funny way of altering one's perception of time.

Slowing down also takes shape in the way we carefully consider choices where others might make snap decisions. Should I go out tonight, or stay in? If I get off the couch, will my symptoms feel better or worse? What is the best thing for me to eat tonight, based on how I'm feeling? If I take a shower in the morning, will that make it more difficult to get through a full day of work? Should I shower at night instead? How can I dress myself to go out so I'm comfortable but still feel stylish? Stopping to consider every little incidental action slows us down.

Since yesterday was Saturday, that meant a weekly trip to one of our local farmers' markets. DF and I buy the vast majority of our food directly from farmers. (There's quite a large backstory here, which I plan to post about in the future. The short version of our reasoning is that it's the cheapest way to get the quality of food I need to eat to help manage my multiple illnesses.) The seasonal market we used to go to ended at the beginning of October, so we're now going to a year-round one; since DF was working on Saturdays I got to go myself. Which was a nice change from our usual habits.

Yesterday I wasn't feeling very well because of some stormy weather that had passed through the night before. My body soon told me to slow down, a not-so-gentle reminder that even when I think I'm taking it slow, my body has ideas of its own. So I found myself in one of the farmers' stalls, surrounded by fresh produce, deeply breathing in the wonderful smells of earthy, spicy fall vegetables. Mmmm. And I found myself smiling despite how crappy I felt.

When illness and pain try to steal everything from my life - friends, family, health, happiness, fun - I find myself eventually refocusing on those things that are most important to me, and those simple things that bring me joy. In a world complicated by medications, symptoms, doctors, hospitals, treatments and bills, it is incredibly refreshing to enjoy the simple beauty of the first winter squash of the season. That joy doesn't make the pain and illness go away, but it does give me a way to step outside myself, even if just for a minute. And it gives me a moment of slowing down.


Be well,
MJ

letting go of superwoman

Last Sunday, I went for my weekly massage with my wonderful therapist, N. After some trial and error before the holidays, I finally settled on N as a good fit for massage. Between the holidays, moving and getting sick, it had been close to a month since my last massage, so I was happy to get back.

During last week's massage, in addition to the complete relaxation I'm normally able to achieve, I was filled with a feeling I haven't had in a long time: unconditional self-love.

Contrast that with the negative self-talk and complete lack of self esteem I've been experiencing all week, after a painful accident. I was getting into the passenger side of DBF's van, when I opened the door and slammed myself in the head. If that wasn't bad enough, I hit my head right where my daily Migraine pain is centered, near my right temple/cheekbone. This injury has been triggering moderate to severe Migraine pain and symptoms all week, meaning I've spent much of my time lounging around the house like a slug. And berating my stupidity all that time.

Like many other chronically ill women, I've had to shed the Superwoman image pretty fast. When I was working, I simply wasn't able to work a full-time job, equally split the chores and errands and take care of myself. Even now, without the full-time job, I still am not able to divide the chores and errands equally with DBF. He's had to take on the lionshare of typical chores, as well as most of the cooking we do to maintain my strict diet.

Having to give up some of my independence for the sake of my health has been difficult, and is a daily struggle. Just yesterday, I posted on MMC that it's still frustrating and hard to ask for help, even if I'm asking DBF, someone who will never second-guess my judgment about my health. While I've rejected the image of Superwoman, her shadow still lingers and sometimes I can't let go of the (unfair) comparison.

But after a week of calling myself an idiot, I'm remembering the hour of totally unconditional self-love I experienced on Sunday. Love that is much more healing and healthy than guilt is. It wasn't just that I loved myself and my personality; I even loved my body, as imperfect and fragile as it is.

Here's the thing. I'll never be Superwoman. I will always have Migraines, Chronic Daily Headache and IBS. But I will also always have myself and my body.

Acceptance of my chronic illness is something I struggle with every day. Acceptance of myself and my body is no easier, especially with so much stress in my life. But finding that moment of unconditional love last week was inspiring, and enough to remind me that I am worth the effort.


Be well,
MJ

looking behind and looking ahead

Well, the holidays seem to have gotten the better of me, as I haven't posted since Thanksgiving. My humble apologies to all of my dear readers out there.

To be honest, I'm not even sure what happened in the past month. The holidays were coming up, sure, but it's not like I was doing last-minute Christmas shopping... or any shopping. DBF and I are still among the ranks of the unemployed, so our gifts to others were very minimal this year.

Our holidays were filled with love, all the same. We spent five days with my family, filled with snow and quiet enjoyment of each others' company. DBF shared some of the cooking duties with my family and left some recipes behind for my mom. It was a nice and recuperative time.

We took the train 500 miles south to visit DBF's family and spend the remaining five days of our trip back east. While this part of our trip was anything but calm, it was a wonderful chance to see family that we don't normally see. Even though it's been two years since I've seen (met) many of them, they hugged and kissed me like I was one of their own. And this year I felt like I was.

There was a lot of stress surrounding Christmas this year - a lot of traveling, including flying; trying to find food safe for me to eat; tight finances and few presents to give out - but it is one of the best I have had in a long time. I'm left with warm feelings of gratitude and fulfillment, like I spent a cold winter's day by the fire with a good book and fuzzy blanket. This is the first Christmas DBF and I have spent together, and it just felt right.

Unfortunately, I caught a pretty nasty cold while we were away, and by the time we got home, I was in poor shape. I very rarely get sick - it's been a couple years, in fact - so I got pretty slammed. Plus, we started moving to our new apartment the week we got back, so I'm still searching for some sort of routine in my life again.

But, I actually feel rather optimistic for 2009. And that is a good feeling.

At the beginning of last year, I wrote:

I don't believe in new year's resolutions, but I am rededicating myself to my healthcare. I have my first appointment with a new headache specialist next week. I am willing to do what it takes to find a treatment regimen that will get my migraines under better control.

I am looking back toward 2007 as a year of growth for me. I've learned much more about my disease, and have started keeping a headache diary to better understand my patterns and symptoms. At least now I feel like I'm doing something toward getting better. I am looking forward to 2008 as a year to continue to learn about my disease, but also to take my life back piece by piece.

2008 certainly was not an easy year, but I feel like I did achieve what I set out to do: continue to learn about my disease and take my life back, piece by piece. I did lose ground to the Migraine beastie, when I had to resign from my board position with the AIA. But I feel I'm better able to cope with my illness than I was a year ago.

Something else I wrote about a year ago:

I think the time has come to make the jump and completely eliminate gluten, dairy and sugar. All three intolerances have a strong genetic run in my family (eggs, too). I think it's worth it to give this diet an honest try. If nothing else, I may lose some weight, which would not be a bad thing.

My problem these days is it seems like anything and everything will trigger a migraine. Stackable food triggers (or suspected triggers) currently include: MSG, sugar, soy sauce, salt, wheat, dairy. There are others I can't think of right now. I've already made the switch to organic meat (which tastes a lot better anyway).

I think that I just need to jump in with both feet and give this diet a real chance. I have migraine pain every single day. If cutting out these foods will cut down my head pain even a little, it's worth it to me right now.

I've now been gluten-free for a year now. The full diet eliminates gluten, cow dairy, MSG, preservatives, artificial sweeteners and caffeine. I've also limited my intake of alcohol, sugar, salt, eggs, nitrites/nitrates and non-cow dairy. I eat organic vegetables and meat as much as possible. I'm proud to say that this diet has massively improved my IBS and cut out my (few) Migraine food triggers (MSG, some wines and artificial sweeteners). I've also lost about 45 pounds, and am a much healthier size 12.

I certainly didn't start the diet with the intention of losing weight, but I've found a much healthier self. I still have a long way to go before my Migraines and IBS are well controlled, but I've actually made a lot of progress in the past 12 months. 2008 was a hard year for many reasons, but it was also a year with many successes, and I need to remember that.

So, here's to 2009. I still don't make new year's resolutions, but I will start out 2009 with much the same intention as 2008: I want to continue to learn as much as possible about Migraine disease, and take the best care of myself that I can.

Happy new year, all.


Be well,
MJ

lemonade award

First, thanks to all of you who have expressed your thoughts, prayers and support for myself and DBF. We are coping pretty well. Financially, we're ok - we had set aside some money for a downpayment on a house, so we have enough savings to keep us going for a while. With the help of the career outplacement services paid for by our former employer, I'm confident that we will not only find jobs, but jobs that we like. It may take a while, but in the meantime, we're enjoying our quality time together during the holiday season.

In the spirit of gratitude, Maureen of Being Chronically Ill Is A Pill has awarded me with the Lemonade Award!

The Lemonade Award is given to blogs demonstrating an attitude of gratitude. I know Maureen has been an inspiration to me, with a positive attitude despite her chronic illnesses. She goes out of her way to express how thankful she is for friends, family and even our veterans. I'm honored that she's passed this award along to me.

In keeping with the tradition of the award, I am passing the award along to these 10 bloggers:

1. Deborah of Weathering Migraine Storms
2. Eileen of My Life With Migraine
3. Ellen of WEGO Health
4. How To Cope With Pain
5. Kelly of Fly With Hope
6. Marijke of Help My Hurt
7. Megan of Free My Brain
8. Rosalind of Working With Chronic Illness
9. Suzie of Sparkling With Crystals
10. Teri of MyMigraineConnection (and others)
    

It was difficult to pick only 10 bloggers to award, as so many of the blogs I read are inspirational in their positive attitudes. I encourage all of you to check out my picks, as well as the others in my blog roll, if you haven't already.


Be well,
MJ

returning to the complementary medicine fold

I posted earlier this month about the options that Dr E gave me regarding my treatment, mainly to try another Migraine preventive, or to go see an herbalist. I decided to take the referral to the herbalist, Dr P. I did not feel mentally ready to trial another preventive med, and I wanted to make sure I was getting the most out of my supplements before I add on prescription meds.

My appointment with Dr P went very well. She spent about an hour with me and gave me a lot of information and ideas.

She thinks that a lot of what's complicating things (and contributing to the strange med reactions) is emotional overload. She did not mean that Migraines are purely an emotional problem; more, she recognized the complex relationship between Migraines, Depression and Anxiety. She thinks a big issue for me is that I don't just allow myself to feel without analyzing - the curse of being a therapist's daughter. I'm very good at figuring out why I'm feeling the way I'm feeling, but not so good at just letting myself feel it. Instead I think about why I'm sad and figure out the reasons for it, but don't let myself just feel sad without the "why". I don't like showing emotions in public, especially at work, so I tend to keep that lid on all the time.

Her main recommendations are that I do some "bodywork" to help put myself more back in touch with my body. She also thinks I need some space to just express emotion without analyzing it. Specifically, she wants me to retry acupuncture, and add massage therapy and dance therapy. I tried acupuncture last year, and while I had some success with it, I felt dissatisfied. She mentioned that the success of acupuncture depends not only on the techniques, but also how the patient "clicks" with the practitioner. This makes a lot of sense, as it holds true for any doctor-patient relationship. Complementary medicine practitioners are no exception.

Dr P had specific referrals for both the acupuncture and dance therapy, and I have a place very close to my office that does medical massage therapy and takes my insurance. While the dance therapy idea seemed a bit strange to me at first, after thinking it over I'm willing to give it a try. When I was younger, I took dance classes (age 4-16) and it was a big part of my life. Dance was my main form of stress relief, and it was very effective. So getting back into dance makes sense, and why not try a more freeform kind. Dr P recommended I try Nia dance, so I'm working on finding a class nearby that works with my schedule. I love the whole philosophy of Nia, and it draws from several movement forms I've practiced in the past, including modern dance, yoga and tai chi, among others.

On top of that, she also changed up my supplements. She had a specific brand she wanted me to change to for my multi, C and B2, and replaced my chelated magnesium with calcium-magnesium. She also added CoQ10 and Petadolex, as well as a live culture form of acidophilus (Primadophilus Optima) for my IBS. She wrote down specific brands and dosages for all of them.

This sounds like a lot of changes at once, and it is, but she thinks I may be better served by doing this at once rather than one thing at a time. She explained that with the holistic therapies, often one thing won't work, or even a combination of five things won't work, but adding a sixth or seventh thing is what allows everything to work together. So by changing my supplements, and adding acupuncture, massage therapy and dance therapy, we're hoping to see some improvement. She (like me) doesn't expect a miracle cure, but hopes this will at least start improving things for me.

It was a lot to think about and absorb. I like Dr P a lot. She seems to have a good balance between western and eastern medicine, recognizing the benefits and flaws of both. I feel good about her recommendations, and like the idea of trying a more holistic approach before I go back to medications. I don't expect this treatment plan to be a magic fix, but I am optimistic that it will help. I see Dr P for a follow-up appointment in 2 months, right at the beginning of January.

I have started both the acupuncture and massage therapy and hope to try a Nia class on Saturday; I will post about all of these in the near future. I've only been following my new treatment plan for a few days, but I can already tell a slight difference in my energy level. I feel more optimistic about this than I have about anything health-related in a long time.

Be well,
MJ

July's headache carnival is posted!

The July Headache Blog Carnival - How Spirituality Helps Us Cope with Migraine Disease - has been posted over at Diana Lee's Somebody Heal Me. Yours truly has submitted an entry, along with many other worthwhile entries I'm still working through.

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 how spirituality helps us cope with migraines and headaches.

Be well,
MJ

on migraines and a path to harmony

I did not originally plan to write a post about spirituality and migraines, as my faith is erratic at best. I'll admit to you now that after reading fellow blogger Megan Oltman's entry on the subject (God Grant Me the Serenity to Accept Migraines I Cannot Change), I felt moved to write my own thoughts. (Thank you, Megs.)

I consider myself agnostic. I was raised Catholic in my family of five, though as time passed, we five Catholics became five different faiths. My father has become more Catholic as he's gotten older. He and I aren't on the best of terms, and perhaps that contributed to my ultimate rejection of Catholicism. (That isn't the subject of my post, however, so I won't detail it here.) My mother is atheist, though she often refers to the power of the "cosmos". My sister converted to Judaism; my brother is "spiritualist other". And then there's me.

My spirituality is best explained as a search for harmony within myself, and with the world around me. I live my life honestly, trying to be true to myself and to those around me. I've been drawn to yoga and now tai chi as an extension of this search for harmony, as they serve as wonderful stress relievers, as well as a way to listen to my body.

Listening to my body. Hmm. Turns out that's key to living well with migraine disease.

Like many others, I finally crossed the line from Catholic to agnostic in college. That is also the time I discovered how important it is for me to listen to my body. At times, I could (and did) override its needs. But college is also when I started yoga, and having that hour-long class each week - even though I didn't always stick with it - gave me an opportunity to hit pause and dig within myself to listen to my needs. And it also gave me a way to reach out to my environment and listen to what was going on around me, to appreciate the simple beauty in a tree or flower.

Now that my migraines have become chronic, and a singular migraine, I've found again the importance of harmony within myself. As an attempt to ease my pain, I've begun to live a much healthier lifestyle. I keep a strict diet. I sleep regular hours. I moderate my indulgences. I do a relaxation exercise every night at bed, to reset myself and to combat my chronic insomnia. And I try to do moderate exercise every week, tai chi with a DVD when I can or even just a walk in town. (Unfortunately, all of these changes have made negligible difference on my daily pain.)

More than anything else, though, I listen to my body and try my best to create harmony and balance for myself. One of the many reasons seeking harmony is important is that it lets me feel I'm doing all I can for my body - and mind - to live healthfully. If I'm living as healthfully as I can, then I can feel confident I'm doing my part in my migraine treatment.

Studying 35 mm photography in college, a hobby and love I have continued post-graduation, taught me to look at the world differently. To find beauty in unexpected places, in the curve of a path in a garden or the grit of a city. I've learned since then to find the beauty of harmony within myself, which has been an essential coping tool living with migraines.

Perhaps my flavor of spirituality is unconventional, or even offensive or silly to some. Perhaps some will see this as an opportunity to convert me; please understand I am not interested in that. I do think that the basic idea of harmony is one that many of us can embrace, especially in the context of chronic illness.

So, on the days of severe pain, when I rage at the unfairness of it, I try to slow down, breathe, and delve deeper into that part of myself that is separate from the pain. It won't make the pain go away, or easier to bear, but it does help me find a spot of peace in an otherwise turbulent world.

Be well,
MJ