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

scars, pain and understanding

I had an interesting conversation with a friend, B, tonight. Without sharing too many of her personal details, she's in the middle of seeking a diagnosis for abdominal pain, originally related to ovarian cysts and now possibly an infection.

I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.

B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).

Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.

It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.

I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.

My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.


Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.


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