Fibromyalgia and Leading a Full Life
So, it’s back to real life after a weekend that passed entirely too quickly.
Sometimes I feel like living with fibromyalgia is a full-time job. No, not really. But fighting fibromyalgia sure can feel like one. Just look at this wordle! My life with fibro is a full life. And a good life.
I grow tired of people complaining about fibromyalgia without acknowledging the blessings that come from their fight with fibromylagia. Anyone with fibromyalgia has a chance to grow self-aware. A chance to realize how mentally tough they can be. A chance to realize what a miracle the human body is.
Fibromyalgia has forced me to look inside myself and level with myself and my God. I don’t believe everything happens for a reason. I do, however, believe reason can be found in everything that happens. (more on this at a later date)
I feel strongly that I am becoming the woman I need to be, in part due to my fight with fibromyalgia. I am open, honest, and strong. I dream big and work hard. I know many of my weaknesses and acknowledge others as I grow aware of them. I don’t stop trying simply because people with presumed expertise tell me I am destined to fail. I know my body and I listen when it warns me I am making an unwise decision.
So many people have healthy bodies and take them for granted, but we, as fibrofolks, should know to be grateful everyday. We live with chronic pain, but we live. We live folks. We live and we can make a wonderful life for ourselves.
So folks, what is the #1 blessing you’ve received through your fight with fibromyalgia?
Fibromyalgia and Gymnastics - Part 1
I am watching the women’s gymnastics all-around competition… I always have mixed feelings when I watch gymnastics. I always get excited. I always get nervous. I always get melancholy. And I always get motivated.
I was a gymnast. It started when I was 20 months old and my mom found me hanging upside, from my knees, in my closet. Then a trip to a University of Utah gymnastics meet started me saying “‘Nastics for Tatie. ‘Nastics for Tatie.” Then, after I failed to outgrow asking for ‘nastics, I began attending Fit Kids at age four. Then I was on team at age six. Then… things went well.
Until I was 11 and I started having aches and pains that never went away. As a gymnast you deal with a multitude of little pains and bruises, and you get to know your body very well. So, when new pains start, and when new pains don’t go away, you notice. I was in sixth grade and I was missing school to identify the cause of pains my doctors deemed more fitting of a 45 year old retired football player. By eighth grade I was so exhausted I slept for the bulk of my Christmas break… and still went back to school exhausted.
And now I am too exhausted for more tonight. I am off to bed. And so is my compy. Stay tuned for part 2… soon.
Way to go Nastia & Shawn!
Fibro on the Fly 002
Back to gauging my pogress by gauging my pain…
Sometimes gauging my pain will only tell me that I am alive. And that I work in an extremely air conditioned building. And that I spend the bulk of my day on my butt. And that I fight a chronic pain condition.
And sometimes gauging my pain will only tell me that I am in need of a break. And that I have doctors who are wiser than I would like to admit. And that I should pay more attention to the advice they give.
And sometimes gauging my pain will only tell me to shutup and keep on rolling…
Fibromyalgia and Perverse Satisfaction
I tried the Celebrex again today and it seemed to make quite a difference. (It usually makes me get sick to my stomach.) For over an hour I felt the best I have in over three months… I felt 100%, for me. I say “for me” because folks with fibromyalgia know a fibrofolk’s 100% is, in fact, not 100%.
Luckily living with fibromyalgia teaches you you can live a nearly complete life and get things done with constant pain, so you calibrate your definition of 100% accordingly. If I simply looked to feel 100% per the typical definition I assume I would waste much, if not all, of my life. To be honest, I cannot remember what it feels like to feel no pain. And yet, I consider myself one of the happiest folks I’ve come across.
Anyway… the stuff made a difference again. But the stuff makes me sick for nearly a day. Nothing sounds good to eat. Nothing stays down. And the pain relief only lasts three hours, maximum. Ultimately, my jury is still out on this stuff. And while they deliberate let’s get back to the pain thing…
I am acquiring a perverse new habit. Or maybe I am finally allowing myself to acknowledge I have always had this habit. Or almost always had this habit. Or something.
Anyway, I often gauge the productivity of my day by my pain level at the end of it. Par example… when I finally sat down today… to relax (with nothing specific to accomplish)… 30 minutes ago… and propped my legs up on the ottoman my loving husband bought for me I realized I hurt something awful. My legs feel like they are slowly being shrink wrapped and will soon burst under the pressure. My hips feel like a couple of giant charley horses trying to buck their way free of my body. My fingers are stiff, swollen, and aching. And yet I have my mind. I can tell today has been a great day. And I mean that.
- Done for the Day…
I woke up to a rough morning but I was in the office by 9. (Random Fact:Last night I woke up at some absurd hour with the most intense muscle cramp I have ever had (I was a gymnast… I’ve had lots) yelling for my husband (who was asleep next to me) to save me… like it was a freaking shark attack or something (fitting for Shark Week!).) Anyway, I was productive at work. I completed reports. I revised some stuff. I watched the stock market. I planned the coming month. I organized my new work responsibilities and delved in. I used my lunch break to prep for coming loved-ones as well as a church function this evening.
I spent the second half of my work day remembering how lucky I am to work with some wonderful folks. (We work on some challenging projects and are asked to come up with answers, forecasts, and projections with little, or no, data. And yet we enjoy ourselves.) I worked a bit late. Came home, cleaned house, prepped for the church activity, made simple treat, greeted the ladies, facilitated a discussion, visited with the ladies, showered, folded laundry, prepped a guest room, planned tomorrow, and then I crashed on this couch.
And realize today has been a great day. I can feel it in my bones.
I love this feeling. I love the pain that comes from a hard day’s work. I love the satisfaction that comes from doing your best and pushing yourself. I love having more than one way to gauge my accomplishments. Lists… and pain….
Does this make any sort of sense to y’all? What do you think?
Fibro on the Fly
I am starting a new tradition. Fairly frequent posts from my iPhone. They will be relatively brief, somewhere between my tweets and my typical posts, and will focus on the little things I usually forget to discuss by the time I take the time to compose a full post.
So here you go… My first Fibro on the Fly:
One of the things about fibromyalgia that I find most fascinating is the relative inconsistency of my symptoms throughput the day. I almost always wake up feeling awful. And I almost always deteriorate during the first two hours of my day. And I almost always take about that long to get feeling well enough to really accomplish what I need to. And, and, and… Today was no different. However this is my favorite part of the month…
Month end reports at work. They are perfect for fibrofolks like myself. A defined process. Problem solving. Double-checking. Analysis. A deadline. Accountability. And such.
I find that with fibromyalgia I live by lists. They help me cover for a deteriorating memory. And they help me feel capable of focusing AND completing tasks. And, since processes are close to lists, I like processes… And trying to streamline them. Therefore, I get giddy about reports.
Bring ‘em on…
Me and Mom... the woman who taught me to live by lists
Fibromyalgia and (not) Being Consistent
I have been awfully inconsistent, of late. Working my way back to nearly-full-time at work has demanded nearly all of my energy and planning activities for the ladies in my congregation has used much of my time (I love it!). Somewhere between the two I have neglected My Life with Fibro, as well as various other endeavors. That changes now.
After a conversation with Danny and my parents last night, I feel rejuvenated and determined to tend to my blog as I tend to my other responsibilities. So, over the next few days I will begin my new posting plan… which consists of posting nearly every day. Just wait! You’ll love it. And, I will be reaching out to y’all for input, guest posts, great finds, and more.
Thank you for your wonderful support, for the questions you ask, and for fighting the good fight to stay positive despite having a frustrating (often immobilizing) invisible illness. If we can fight fibromyalgia, we truly can do anything.
Fibromyalgia, Gauging Pain, and Self Doubt
I was into the office by eight Monday morning (If my memory serves me correctly that is the earliest I have been to work in four months.). By nine I thought my legs were waging war on my nervous system. And on my morale. And on my capabilities. And on my touch with reality. But, like many people with fibromyalgia, I ignored the pain.
Knowing the early morning would lead to increased pain, I took Celebrex with my breakfast that morning (as I often do). I have found significant as-needed relief in Celebrex with one significant side effect. And that side effect was in full effect Monday…. As I toughed out the pain I was fighting my stomach. No matter what sort of meal i eat with my Celebrex it always seems to make me violently ill.
So, Monday morning I spent what felt like hours talking with myself. (I have learned from my mother, who lived with giardia for half a decade, that you can almost always talk yourself out of, what we call, “losing your stomach.”) I sat in my chair and centered. I reminded myself to be calm. I focused on breathing deep. I gave myself a pep talk. And it seemed to work… for the first few hours of work.
I had a doctor’s appointment over lunch and by the time I got back to work I was spent. I gutted out another hour before deciding to work the rest of the day from home. As I walked to my car I did what I always do when I leave work early… I quizzed myself. I ranked my pain on a 1-10 scale. I ranked my fibro fog on the same scale. And then i second-guessed myself.
Would “normal” people think this pain was as unbearable as I seem to think it is? Would “normal” people support my decision if I could share my pain with them? Would normal people even have gone to work today?
I have to ask myself those questions nearly everyday. I think one of the most challenging aspects of fibromyalgia is self doubt. And it was introduced to me by doctors, teachers, friends, coaches, and so-called experts. And it leads me, on tough days, down a mental road of confusion and frustration. Wondering if I’m just a wuss. Wondering if I’m positively incapable of being the tough girl I was taught to be during my decade as a gymnast. Wondering if saying I have fibromyalgia is just a polite way to tell people I am an incapable and inconsistent Gen Y-er with absolutely no tolerance for pain.
Screw you, self doubt. I am better than you. I trust myself, and I am learning to trust the part of my brain that tells me, “Enough is enough, K8. Be wise with your health.”
So, after the round with self doubt I decided to dwell on the positive. I was able to contribute significantly to month-end reporting and analysis last week. I was able to complete a project all by my lonesome Monday. I was able to work around the house over the weekend without working myself to immobility.
I am making progress. I am making progress at a more deliberate pace than I, and most everyone but my doctor, would prefer. I am making progress because I listen to my body and allow it to have ups and downs. As long as the next down is higher than the last I will continue to be upbeat and optimistic. If ever the next down is lower than the last I will reassess and revamp my coping methods and treatment plan.
Fibromyalgia and Fighting Fear
Sunday is my favorite day of the week. I get to relax, attend my church service, spend time with my family, and center in preparation for the week ahead. There is no more-fitting way to prepare for a week of working for the weekend than to enjoy the weekend. But when does the weekend end?
For me the weekend threatens to end when I first realize Monday is nearly here… I usually look to my right, breathe deeply, and return to whatever conversation I was participating in.
Tonight it wasn’t a conversation, it was a movie. Danny and I and some friends were at my parents’ home when Jane said something about a love song and a sandwich. I pictured the sandwiches in the cafe at work and my breathe caught in my chest as I realized I would be at work in less than ten hours.
But the weekend officially ends when I retire to my room Sunday night. I take my medicine, Danny and I discuss people, concerns, and gratitudes that warrant special attention in our family prayer, one of us prays, I climb in bed, Dan lotions my feet, we set our alarms, and I panic. I realize I forgot to worry about work over the weekend (So, I realize the weekend was a complete success.) I realize I need a perfect night’s sleep. And I realize how far I have yet to go on the road to recovery.
I have been working my way back into the office for nearly a month (although, I would argue I have been working my way back to work since I left March 7) and I feel just as far from the real thing as I did nearly a month ago. In reality, I have made significant improvements. Last week I worked an average of seven hours a day, Monday through Thursday. Thank goodness for the 4th. (Friday I gave thanks for my forefathers and my freedoms… including my freedom from work.) Anyway, seven hours is only two hours short of a full day at my company, and I’d consider that pretty good progress…
That is until my Sunday night panic. Then I feel like a failure. Then I feel like a full day’s work is impossible. Then I feel like just thinking about work is going to send me into a fibromyalgia flare. And then I shutup, get over my fear, and remember sleep will do far more good than fear.
Fibromyalgia, Education, and Full-time Employment - part 2
I have a dream job, at my favorite company, working for two of the nicest folks I know. I get to use computers, do math daily, and work on projects I can’t tell you about. My team includes a variety of brilliant folks with experience the likes of which I previously thought only fictional characters attained. Think Jason Bourne meets guerrillas in an oil field in Colombia on his way back from Kuwait as he heads toward Saudi Arabia. Now, add a train, Seeley, a 20,000 man construction camp, and a just bit of the ordinary.
In my first year of employment with this company I have received two raises, both without any request from me. My total compensation package has increased over 20% since my hire date. My title was revised to better reflect the skill-level required for my position to those outside the company. My first year in said job has been better than I could have imagined it would be. And yet my fibromyalgia flares…
So, like many folks with fibromyalgia, I wonder about fibromyalgia and full-time employment.
Is it impossible?
No.
Is it difficult?
Absolutely.
Is it worth it?
That is for each of us to decide on our own. As for me it is worth the struggle.
My job challenges me to fight the fibro fog by keeping me using my brain. My company supports me and allows me the flexibility I need to stay healthy. And, most importantly, my team of coworkers encourages and teaches me daily. My heart is buoyed up by the kind words I receive from many of my team members. As they reach out, in kindness, to me I have the privilege of seeing my coworkers as people, with struggles, goals, and challenges… just like me.
Others show their support in less-obvious ways that are no-less-meaningful than outright expressions of concern and care. And others clearly do not understand. As annoying, and sometimes hurtful, as I find this, I am trying to remember they must have a valid reason for their hesitance and efforts to avoid personal, emotional, and other potentially uncomfortable topics. Like me they face struggles… but I swear a positive and friendly attitude will get you somewhere. Being negative and disinterested will get you well-acquainted with failure and left behind.
But yeah… enough of that.
More later…
My Fibromyalgia Treatment Plan v2.1.1
Monday I had an appointment with my chiropractor in the morning and an appointment with my family doctor in the afternoon.
I love my chiropractor. Dr. Delilah became my chiropractor through an odd string of events I can assuredly say was not a coincidence. Since my first visit I have not only regained mobility and increased my mental clarity, I have come to pay more attention to my body and the things it tries to tell me. And, beyond this, I have found a friend. Delilah has a genuine interest in my health, a desire to help me find things and people that will provide me relief, and (like me) a firm belief that I will one day be free of my fibromyalgia symptoms. As usual, I left her office feeling motivated and capable. (Does anyone else feel like their fibromyalgia makes them keenly aware of their strengths by making them face their weaknesses?)
A few hours later I left my house to head to my 2pm family doctor appointment. I arrived, checked in with the registrar and took a seat. After about five minutes she stood up, called my name, and said “You’re appointment is not until 3pm, are you sure you would like to stay?” I felt stupid and muttered something stupid in response. As I left I pondered how sure I had been that my appointment was at 2. I have been feeling quite a bit better, especially when it comes to fibro fog, so I was disappointed to find I had been so wrong. I got over it after a 30 minute rest at home and the drive back to the doctor’s office.
The appointment went well. I mostly wanted to discuss pain relief on the extremely difficult days. AJ was quick to offer samples of Celebrex and I am excited for the potential relief. I have not taken Celebrex in over a decade. I honestly do not remember how it worked then. These samples can be taken on an as-needed basis, so I will use them only on the days when nothing else works. We talked about the dangers, the importance of taking the meds with a meal, and how quickly I should see relief and how long it should last. I walked out feeling more prepared for the days ahead and my gradual return to work.
Bring it on… but don’t make me watch those lousy movies.
I'm K8. I have fibromyalgia and I am grateful for it. (Yes, you read that right.) 
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