Chronic Illness · Chronic Pain · Mayo Clinic · Mental Health · Personal · Recovery

30 Things About Living with Fibromyalgia

This piece was originally written in honor of Invisible Illness Week 2015. Today, on Fibromyalgia Awareness Day, I share my story once again. The numbers got messed up, for some reason, and I couldn’t figure out how to fix them, so please forgive that.

  1. (One of the illnesses) I live with is: fibromyalgia.
  2. I was diagnosed with it in the year: 2013.
  3. But I had symptoms since: 2006.
  4. The biggest adjustment I’ve had to make is: pushing my limits, and yet going past them. I used to do everything under the sun, and it was really hard for me to admit that I needed to limit or even quit some of them to ensure that I had enough time to take care of my physical and mental health. However, it’s made me more grateful for the things that I still do. I only put things in my calendar that I’m really excited about. I used to say yes to a lot of things I actually wanted to say no to. In an ironic way, fibromyalgia has made me a healthier person in terms of my time management and mental health.
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[image description: two hand-drawn candles against a tan background. Next to the candles are the calligraphic words “Be gentle with yourself.”]
  1. Most people assume: because I smile or have “good” pain days, that I can’t possibly be in that much pain. That is false! There are indeed days that I can walk 7 miles, but there are days where 7 steps of walking on flat ground feels like too much for my legs to take. Chronic conditions are weird because they wax and wane, flaring and disappearing in intervals. However, I always have at least a 3/10 pain sensation in every single part of my body, and sometimes it goes as high as 9/10. An average day is a 6 or 7. The type of pain I live with on a daily basis is the kind that people without chronic pain would probably go to the emergency room for, but I’m used to it at this point, and Mayo Clinic’s Pain Rehabilitation Center taught me how to breathe through the pain and not let it turn into suffering.
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Note: I don’t think medication doses or recommendations can be done off a chart, but I deeply appreciate the Mankoski Pain Scale because of its explanations of how pain affects functioning.
  1. The hardest part about mornings are: having no idea how I’m going to feel that day until I get out of bed. Also, oftentimes, I had trouble sleeping (something that’s colloquially called painsomnia because it’s insomnia or poor sleep quality brought on by chronic pain), so it’s hard to know how long I’ll last that day in terms of energy.
  2. My favorite medical TV show is: Mystery Diagnosis.
  3. A gadget I couldn’t live without is: my computer, to do research about how to improve my health, to communicate with friends (especially when I’m too tired to visit them in person), and to build a community of others dealing with similar issues.
  4. The hardest part about nights are: being fatigued all day, but still struggling to fall asleep. Also, I “hit my wall” pretty quickly in terms of exhaustion to sleep necessity, which is difficult due to its unpredictability and speed. It’s not graceful and slow-moving like it used to be. I’m getting better at discerning how to spread my energy equally through the day, but, for example, I may be out in a social situation or in the middle of an assignment that’s due the next day, and all of a sudden, I know that the evening needs to end for me pretty immediately.
  5. Each day I take anywhere between 12-15 pills & vitamins. 
  6. Regarding alternative treatments I: have had some luck. I have benefitted greatly in the past from massage therapy and acupuncture. Now, I mainly do appropriate physical activity and physical therapy activities targeted to my weakest muscles. In addition to the amazing benefits that I get from exercise, I was taught at Mayo Clinic’s Pain Rehabilitation Center how to change my cognitions about my pain through things like cognitive behavioral therapy exercises and learning not to be shocked or alarmed by my constant symptoms. (By the way, I couldn’t recommend Mayo Clinic’s PRC enough, truly – it gave me my life back. Here is a list of 25 of the most important things I learned there). In terms of medical treatments, I’ve never really felt any sort of relief from supplements, other than to improve and balance my vitamin and mineral levels in general.
  7. If I had to choose between an invisible illness or visible I would choose: this is a loaded question.If you asked me on two different days, you’d get two completely different answers. It is really, really difficult living with either. It’s more uncomfortable than I can describe to have people stare at me in parking lots when I get out of a handicap spot on rougher health days when I feel a need to park there. I get it; I look perfectly healthy! But once you get close enough to me or anyone else with invisible illness(es), the conditions only remain invisible if you actively ignore them. If you don’t know someone, don’t assume you know anything about their life situation, and don’t police where they park or how they use mobility devices. (Don’t do this even if you know the person well. It’s just not okay).
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Source.
  1. Regarding working and career: I hope that I’ll be able to work 40 hours a week on location wherever I work, but I may end up doing some of it from home through writing work and blog work. However, my illness has guided to exactly what I want to do! I’m in seminary to become a pediatric hospital chaplain to serve children and families who are dealing with difficult health situations. It’s really cool to me that my life shifted in such a meaningful way upon my severity of symptom increase that led up to my diagnosis. I have huge goals that God has given me, and if I accomplish even just a few of them, I’ll consider my life a success. (I already do, anyway.)
  2. People would be surprised to know: how mentally foggy chronic pain can make you. I almost feel like I have ADHD symptoms that are directly proportional to the pain I’m in. However, because it’s resulting from my fibromyalgia (and is a common symptom), I can’t be prescribed a drug to help feeling that way because it wouldn’t target the right cause. Some of the right drugs I’m on have symptoms of foggy cognition, too, but to go off of them would mean that I am more distracted due to pain than side effects. It’s a fascinating and horrible catch-22, and I’m always discerning with my doctors the delicate balance between medication-related pain relief and quality of life.
  3. The hardest thing to accept about my new reality has been: knowing that my family and friends struggle with feelings of helplessness at times. It’s difficult to know what to do or say, and even with time and experience, it’s hard to know that no matter how much you can help, your loved one will still be in, at times, excruciating pain. I hate knowing that my illness sometimes hurts and stresses out my loved ones, like it does me, but in different ways.
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[image description: a white piece of paper with two different kinds of texts on it. One is a lowercase handwritten cursive and that comprises the top and bottom lines: “you are enough” and “you always were.” In the middle of these sayings are black capital letters with yellow, green, and pink dots in them. This font is smaller than the handwritten cursive and it says: “not because you did or said or thought or bought or became or created something special, but because”. Looking from the whole, this says: “you are enough not because you did or said or thought or bought or became or created something special, but because you always were.”]
  1. Something I never thought I could do with my illness that I did was: exercise often! However ironic this sounds, exercise is actually one of the best ways to treat fibromyalgia pain. I exercise far more now than I did before my diagnosis, about 3-4 times a week. I’m grateful for physical therapy exercises, ellipticals, and the occasional Zumba class when I’m willing to put more pressure on my joints.
  2. The commercials about my illness: are nonexistent except for the occasional commercial for the drug Lyrica, which I used to take before I switched to Horizant, an extended-release Neurontin. (Both are great.)
  3. Something I really miss doing since I was diagnosed is: being able to push beyond my limits for a day without consequences the next day. If you haven’t read The Spoon Theory, it’s a great way of understanding what I mean here when I say that I don’t borrow against tomorrow, no matter how much I want to do something today. There’s a delicate balance of pushing yourself on your worst health days, and yet holding back a bit on your best health days.
Spoon-theory
The Spoon Theory is one of the best ways that chronic illness can be understood by people who don’t live with chronic health conditions. I consider myself a spoonie because of the challenges brought on by fibromyalgia and a dysautonomic condition, postural orthostatic tachycardia syndrome (POTS), which I may write a whole “30 things” article about someday because it’s a doozy in its own right. Source (this article is worth reading!).
  1. It was really hard to have to give up: being carefree about my diet, exercise, and lifestyle (basically, being a young adult without major life problems to face). Taking care of my health takes more time than I think most people in my life can imagine.
  2. A new hobby I have taken up since my diagnosis is: Tumblr! I created a little blog called “Illness to Wellness” that has since become popular, helped me make new friends, and learn from others who have been dealing with their chronic conditions far longer than I have.
  3. If I could have one day of feeling normal again I would: stay up all night until the sunrise. Eat whatever I felt like and not have to worry about it being gluten-free and dairy-free. Be reckless (within reason). Hand-write thank you cards to all of the people who have given me support and love throughout hard times.
  4. My illness has taught me: what makes a true friend. Good ones stayed; scared ones left. I totally get it; it’s hard, but it’s harder for me than for you. What’s incredible is that I gained more friends than I lost, and that is not at all the typical story. My illness also led me to God, Who was the greatest find of my entire life.
Multiracial Hands Making a Circle
Conceptual symbol of multiracial human hands making a circle on white background with a copy space in the middle
  1. Want to know a secret? One thing people say that gets under my skin is: “You’re so lucky to have a handicap permit for your car!” Yes, it’s nice to park close to buildings, but it comes at the cost of severe chronic pain. I would do anything to not need it on my toughest health days.

    “I get tired too!” Fibromyalgia fatigue is a whole other ballgame from occasional exhaustion. I empathize with you, but please understand that. It’s like saying that you understand my chronic pain because you got a paper cut or sprained your pinky once.

    “You’re not disabled; look at all of the things you can do!” To assume that you know someone’s story better than they do is surprisingly rude. By the way, disability isn’t a binary. I live in a strange, liminal space where I sometimes consider myself disabled and sometimes don’t feel like that. I’m going to write a piece about this feeling at some point.

    “You should be able to do this task; come on!” Trust me, I’ve probably already grieved not being able to do it; your saying that makes me have to suffer that loss again. Please just assume the best of me and believe that I’m trying my hardest, because trust me – I always am.

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  1. But I love it when people: ask me if there’s anything that they can do to make my day easier, whether it’s carrying my purse for me so that my shoulder doesn’t hurt, making me food so that I don’t have to exert that energy, or just sitting with me and watching Netflix when I’m in a lot of pain and don’t have the cognitive powers to do schoolwork or other productive things. I wrote a resource page on basic tips to help others who are struggling with chronic conditions; if you want to know more, read up (and here are even more tips)!
  2. My favorite motto, scripture, quote that gets me through tough times is: I am a notorious quote-memorizer, so I reblog a lot of quotes for y’all to enjoy. But here’s one that’s resonating with me right now: “It does not matter how slowly you go as long as you do not stop.” – Confucius. Also, in terms of a Bible verse, one that always warms my heart is “And surely I [God] am with you always, to the very end of the age” (Matthew 28:20).
  3. When someone is diagnosed I’d like to tell them: oh my gosh, so much. I’m so glad that they now know the source of their pain and have a name for what they’ve been going through, but I am so sorry that they have fibromyalgia. But mainly, I’d like to let them know that they are loved, believed, worthy of care, and amazing to be living, despite such a difficult condition. And that I’m here for them if they need me, and that life can be lived anyway. I’m living proof.

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  1. Something that has surprised me about living with an illness is: the amount of compassion and empathy it gives you for others who are suffering, too.
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A tanka poem that I wrote about surviving unexpected challenges. 
  1. The nicest thing someone did for me when I wasn’t feeling well was: clean my entire apartment and cook me dinner that lasted multiple meals because it had been over a month since I felt well enough to do basic household tasks. I cried.
  2. I’m involved with Invisible Illness Week because: we are the 96%! And because I am a fighter who’s willing to tell the world my story to further the good of the spoonie community.
  3. The fact that you read this list makes me feel: honored and hopeful. Thank you, friend.

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4 thoughts on “30 Things About Living with Fibromyalgia

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