Motivation v. Fibromyalgia

Fibromyalgia is a funny mistress. She fades in to the background, then leaps out suddenly demanding attention and complaining you’ve been neglecting her. One minute you are left in blissful peace, the next cringing under her wrathful glare.

It’s been a wrathful glare kind of month.

Despite the pain and thickening soup of fog in my brain that makes even deciding what to wear in the morning a monumental task, I have pushed through. I would love to succumb and just crawl back into bed under a halo of heating pads, but I still want to live life.

It’s a delicate balance.

It helps that I have things to look forward to. Last week – a Ladysmith Black Mambazo concert at my theater. I was practically weaned on Paul Simon’s Graceland album, so missing Ladysmith was completely out of the question. I bucked up, hopped the bus, and blissed out 4 rows back to the humor, beats, and vocal harmonizing of a South African musical treasure.

Coffee with a friend. Planning for a future trip. Flying home to my hometown. Even a new, fresh magazine, still scented in a cloud of perfume samples. I focus on motivations, however large and small, to pull me out of bed and through the fibro gauntlet.

Today, it’s a desire to walk to work in gorgeous, unseasonal spring-like weather. The snow is almost gone; it could be late March in Wisconsin. I almost expect to see the daffodils peeking out.

In a couple of weeks I’ll get my chance when I fly home to Portland, Oregon. Family, friends, the mountains, waterfalls, and craggy coastline all await to embrace me back into the fold. Now if that’s not motivation to get up everyday, I don’t know what is.

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About chronictraveler

Chronic Traveler starts as a dream, one that I thought I had lost, but that has slowly changed into a mission to realize and live that dream every day. In December 2007 I became seriously ill and the doctors did not know what was causing my illness. I had to stop teaching as my life tumbled into a never-ending nightmare of doctors, hospitals and tests. Finally, in May 2008 I was diagnosed with a chronic condition - fibromyalgia. I was only 26 years old at the time. I have had to give up teaching, and now work part-time at a performing arts center as I learn how to manage my condition and improve my quality of life. What helped me through the months of uncertainty and sickness, and continues to inspire me, was a new focus on what truly mattered to me: family, friends, gardening, the arts, and especially travel. I have always fed my soul by traveling, ever since I first stepped off the plane at age 16 in Kathmandu, Nepal to help with an orphanage's building project. Meeting new people and experiencing how they live and how they view the world infuses my life with a richness I was so afraid I would lose when the doctor first said, "You have fibromyalgia". This blog is my story, as I begin to forge a new path. I am embracing my life as it is, with the fibromyalgia pain and fatigue, and learning to do what I love regardless. It may mean I have to go slower and take more naps or breaks! But I am determined to learn how to travel and experience the world, and hopefully what I learn will help others like me who believe their medical condition stands in the way of their travel dreams.
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9 Responses to Motivation v. Fibromyalgia

  1. Andrea says:

    I think you’ve touched on the key to living with a condition, and that’s actually living. Continuing to set milestones, things to look forward to, and then making plans to do what you need to do to get there, is necessary to survival. For example: By this point you’ve flown enough to know what a number it does on your body, so you know what steps you need to take to mitigate it. NOT going to Portland is not an option, so you do what you have to do to prepare and mitigate. You know that you need to stay active to be able to do stuff that you want to do. You can’t just get up off the couch and run a marathon with no training; fibro makes it so your body needs a similar amount of constant “training” to be able to step up and do slightly more strenuous things, like travel. The urge to wallow is so strong. I lost years of my life to it. I’m just now getting that life back, and I don’t want to lose it.

    • chronictraveler says:

      Absolutely, 100% agree. It makes those moments there’s no choice but to rest more bearable knowing we’re just recharging for what makes our life worth living. I’m also learning we need to be kind to ourselves, to forgive ourselves when we do give into the wallowing – otherwise it is so easy to fall into a never-ending cycle of wallow, beat ourselves up, wallow some more, etc that just kills our self-esteem and any motivation.

      Have you ever thought about forming a support group, even just long-distance over email/etc for those of us who were diagnosed so young? It’s amazing how many women in their 20’s and early 30’s have fibro, yet everyone keeps telling me, “I thought that was a condition older women get.” Maybe there’s one out there and I just haven’t located it yet.

  2. It’s definitely a constant struggle. I have been dealing with the symptoms since I was 15 and now, 7 years later, I am just now getting a diagnosis and treatment. I had to say I felt funny about it because Fibro had kind of always been presented as a sort of wimpy illness that probably didn’t exist. Essentially, over 7 years I had been made to think I either had something horrible or I was just lazy and wimpy. I’m still not 100% sure what to think about it. I know they want to put me on graded physical therapy, medicine, and counseling. And I think the counseling is really important in a world where people are less than sympathetic to a illness they can’t see or understand. Lord knows I’ve been treated like crap by doctors and friends.. sometimes even a family member. Best of luck to you in doing what you love despite the illness.

    P.S. my blog and forums are meant as a support group for people with chronic illnesses.

    -Megan
    The Chronic Life, a blog and forums for people living with chronic illness

    • chronictraveler says:

      That is a long time to go without a diagnosis and facing the skepticism of the medical experts. I want to reach through the computer and give you a hug. This can be an incredibly isolating experience – I have definately learned who my real friends are. I am also lucky I found a doctor who trusts my words at face value, doesn’t minimize my pain or fatigue. But it took several rounds of doctors to find her. Don’t give up searching until you find a supportive doctor. I agree, counseling is so important – I struggle with my self-esteem after years of feeling lazy and being told I’m a hypochondriac or depressed. I still fall into the cycle of beating myself up.

      I will definately be checking out your blog. Thanks for the encouragement!

  3. Thank you! I was also very young to be facing it and with most of my family being skeptical. I have a good general practice doctor, he just obviously didn’t know much about treating Fibromyalgia. He diagnosed me with it several years ago but gave me pain meds and stimulants. Naturally that did nothing to actually help, so I always assumed I never had it. But so far as listening, he was always good about that.

    • chronictraveler says:

      Building a supportive medical team takes time, that’s for sure. Is you doctor open to learning more about fibro? My doctor isn’t an expert by any means, but she’s constantly reading and attending conferences. Pain meds have never worked for me, either no effect or the side effects replicate the worst symptoms of fibro. I’m beginning to think managing fibro needs to be holistic, not something that can be fixed by pills.

      • Oh absolutely. Cleveland Clinic was who diagnosed me and they are sending their recommendations for treatment. He’ll follow that for sure. Pain meds don’t work because the architecture of Fibromyalgia pain is different from that of normal pain. It does nothing to calm our hyperactive sensors, so it just doesn’t do anything. That’s why they don’t work. I just started taking Lyrica- I’m titrating up from one at bedtime to 2 capsules twice a day. Will probably add on Sevela since Cymbalta gives me side effects. But other than Lyrica, the only thing that really works so far as pain would be an NSAID like Celebrex or Mobic. This is all passed on from what I learned at Cleveland Clinic.

      • chronictraveler says:

        How does Lyrica work for you? It had no effect on me whatsoever, but I understand it only works effectively in about 10-20% of fibromyalgics. I made a ton of lifestyle changes in the past 5 years, which have made a huge difference, such as walking everywhere and maintaining as regular a sleep schedule as I can, changing my diet, etc. I know as I get older this will not be enough. Does the Cleveland Clinic specialize in fibro?

  4. Well, I’ve only been on it about a week and am only on 150mg at bedtime so far. The recommended dose for Fibromyalgia is 300mg a day. I do think in the past day or two my pain has seemed milder. Have they tried you on the Cymbalta or Sevela? Also, I ironically just did a blog several days ago about maintaining your healthy body to help out.

    Clevelnd Clinic has a specialist in pretty much everything. I can tell you that they are the #3 place in the US for Rheumatology. If you go on their website, you can search their doctors by specialty. I saw Dr. Khasnis but he was not a Fibro specialist, just general Rheumatology. At the time I did not know I had Fibro. If you’re having a hard time working out a good treatment plan for you, they probably could help you out.

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