05.12.2017

What living with fibromyalgia has taught me | 2017 International Fibromyalgia Awareness Day

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A few months ago, I posted a meme (i.e. graphic) on Facebook about how chronic illness has much to teach us. I remember one of my readers balked at the posting, commenting (and I’m paraphrasing here), “What could living in pain possibly teach me?” I understood where she was coming from. It’s a struggle sometimes to see the lessons taught by fibromyalgia, but they are there if we really look and reflect.

A couple of weeks ago, I was trying to come up with a post idea for International Fibromyalgia Awareness Day when I happened to watch a YouTube video from Lemons ‘n’ Lyme where she asked her fellow Lymies to share what they’ve learned from living with a chronic illness. I got inspired and decided to pose the same question to my fellow fibro warriors. Below you’ll find their responses and my own.

After you finish reading this post, I hope you’ll take a few minutes to share your own lessons in the comments section below. Happy Fibromyalgia Awareness Day!

What living with fibromyalgia has taught me | Fed Up with Fatigue

Nikki Albert, Brainless Blogger and Migraineur Mutterings and Musings, Canada:

What fibromyalgia taught me | Fed Up with Fatigue

Nikki Albert, Brainless Blogger and Migraineur Mutterings and Musings

“In this hectic, fast-paced society, fibromyalgia has taught me to pace myself. I can still be productive and pace my activities. I can say ‘no’ and not feel guilty about it if it is too much added to the plate. It has taught me moderation in all things.

“And, definitely, it has taught me to take the time for self-care without any guilt. To take that time for myself that I need to recover energy or recover from a flare in the way I need to do it without the guilt I am not being functional enough or productive enough.

“It has taught me that I am actually important and that I should take the time to take care of myself. Not try to match everyone else and push through the pain and end up in a worse spot. I don’t mind being the tortoise and not the hare. It taught me a lifestyle that is just more controlled and paced, and I am all good with that because it is all good for me.”

Sarah Borien, A Life Less Physical, United Kingdom:

What fibromyalgia has taught me | Fed Up with Fatigue

Sarah Borien, A Life Less Physical

“I’ve always been a pretty busy person – mentally and physically. I don’t really know how to relax; during rare meditation sessions my body is sitting quietly but my mind is making to-do lists. I’ve also always been a city girl – living and working in the hustle and bustle and loving the crowds and the noise. But, when I developed chronic pain, the city lifestyle became increasingly difficult to manage.

“I’ve had fibromyalgia for eight years, and I’m now 32 years old. A couple of years ago I realised that something had to change; I had to admit that queuing at bus stops, standing on trains and walking between office blocks was no longer doable. My husband and I discussed leaving London and moving to the countryside. He’s always preferred the quiet life and, although I preferred the city, I knew the green fields were cheaper, nearer to work and a lot less physically demanding. It was the sensible choice.

“So what has living with fibromyalgia taught me? Believe it or not, it’s taught me to love the quiet life. We moved to our country cottage 18 months ago, and it’s changed everything. We have a pond and a vegetable garden, and my pain has forced me to slow down. It’s shown me the joy of [the] countryside, the views and the sounds. Fibromyalgia has helped me find peace and taught me to live in the – very green – moment.”

Donna Gregory Burch, Fed Up with Fatigue, Delaware:

What fibromyalgia taught me | Fed Up with Fatigue

Donna Gregory Burch, Fed Up with Fatigue

“Living with fibromyalgia and Lyme has taught me that you can’t always trust outside appearances. I am a perfect example of this. I look healthy and completely normal. No one would ever suspect that I’m constantly in pain.

“Whenever I encounter negative people these days, I remind myself that I don’t know their backstory. I don’t know the real reason that customer service rep was short with me on the phone or why the cashier is grimacing while she’s loading my groceries into a shopping basket. I can’t take it personally because maybe they’re in pain, too.”

 

Brandi Clevinger, Being Fibro Mom, South Carolina: 

What fibromyalgia taught me | Fed Up with Fatigue

Brandi Clevinger, Being Fibro Mom

“Living with fibromyalgia, in many ways, has strengthened me and has made me realize just how much I can do. It wasn’t always so when I first received my diagnosis in 2012. There was a lot of information to process and an adjustment in the beginning stages of my fibro journey. Successes and failures have littered my path to healing, but all of them have been used as stepping stones to reveal the person I am today.

“Fibromyalgia has taught me that illness can be a negative or positive impact on your life – that choice is yours. I choose to have a positive perspective of my less-than-positive illness. Yes, there are negative moments, that much cannot be denied. Taking that negative and flipping it to be a positive is up to me and how I decide to allow it to impact me. Many situations cannot be changed – it is what it is. What I can change is how I approach, view and handle it.

“I am stronger, healthier and wiser than I have ever been in my life, and I owe it all to fibromyalgia.”

Cynthia Covert, The Disabled Diva, California:

What fibromyalgia has taught me | Fed Up with Fatigue

Cynthia Covert, The Disabled Diva

“Living with fibromyalgia has taught me to appreciate every moment. In my early chronic days, I only appreciated my ‘good’ days. I had a hard time recognizing that every minute of each day is special. As the years passed, I began to see that there was beauty and joy to be found in what were some of my most painful moments. I used to allow flares to isolate me from my friends and family. It wasn’t because I didn’t want to spend time with them; instead it was because I didn’t want them to see me in such a state. Thankfully, I later learned to use that time to connect with them differently.

“Those closest to me understand that flare days are spent differently than my ‘normal’ pain days. Flare days are for resting on the couch or my bed and watching movies or television. Flare days are for having light and humorous conversations. Flare days are for picnics in bed and pajama parties. Sometimes, just having someone stay with me, to take care of answering the door or phone, helps me more than any product or medication. Moments like these have made some of my most physically painful days less emotionally painful.”

Casey Cromwell, Casey the College Celiac, Colorado:

What fibromyalgia has taught me | Fed Up with Fatigue

Casey Cromwell, Casey the College Celiac

“When I think of the lessons living with fibromyalgia has taught me, one word comes to mind: strength. I’ve learned how strongly a mother must advocate for her child’s health. I was diagnosed with fibromyalgia at age 11 – a surprisingly young age, according to most doctors – and I know I would’ve had to wait years longer for a diagnosis if my mom hadn’t believed that my pain was real – and told the doctors just that. Repeatedly.

“I’ve learned how strong I must be in sticking to what works with my body. I was the college student who went to bed early, didn’t go on midnight adventures (because of my sleeping pills) and moved a little slower on some days than others. But I had an awesome college experience – just a unique one.

“Perhaps most importantly, I’ve learned how strongly fibromyalgia can bring people together. My mom and my college roommate have fibromyalgia, and I’ve always felt blessed to have people who understand what being in 24/7 pain feels like. That same understanding has turned strangers from around the globe into friends.

“Living with fibromyalgia has taught me too many lessons to count. However, the underlying lesson is always this: I am stronger than I think, and I am strong enough to keep kicking life’s booty…even with a chronic illness.”

Donna Grant, February Stars, Scotland:

What fibromyalgia has taught me | Fed Up with Fatigue

Donna Grant, February Stars

“The biggest thing fibromyalgia has taught me is to slow down. Before I got sick my life was very fast paced, and I didn’t really take any time out for self-care. In the beginning, I have to admit that slowing down was not a choice that I actually made. My symptoms became so severe they forced me to stop. Although I was initially resentful of this, over time it has resulted in me being more grateful and appreciative in my life. I learned the benefits of slowing down, and my priorities completely changed. Whereas work was always a top priority for me, I now realise there is far more to life.

“I’ve learned new hobbies and passions that I overlooked before, such as crocheting, watercolour painting and blogging. Plus I have formed better relationships with those around me by opening up and accepting their help and support, which also enables me to put my health first.

“Perhaps most importantly, slowing down and being unable to do it all has resulted in me being better at prioritising. I let go of things that aren’t totally necessary, and I no longer sweat the small stuff. Instead, I try to focus on the bigger picture. If it won’t matter to me in a few days or weeks then I don’t let it stress me out. My health is far more important. Speaking of health, slowing down has had the benefit of helping me to feel better. I no longer push myself outside of my limitations (unless it’s a conscious decision for a special occasion), and I plan rest into each day. It helps massively.”

Norman F.S. Hanley, Men with Fibromyalgia, Arizona:

What fibromyalgia taught me | Fed Up with Fatigue

Norman Hanley, Men with Fibromyalgia

“Since my diagnosis, I have learned that every moment of every day is precious. I know that sounds like a platitude, but it is the truth. Things I used to be able to take for granted, such as camping, going for a walk, running, sports and more, are things that I can no longer participate in much less enjoy.

“I think, even more importantly, that I have found who my true friends really are. The ones that could not hang around my illness, have dropped off by the wayside, and the friends that I still have are even closer today than they were before my fibromyalgia.

“The biggest thing I have learned with fibromyalgia in my life is to use my suffering to help others. Now I know that sounds morbid, but it’s the truth. In trying to help myself, I use my illness and experience with fibromyalgia to help others. For me, this makes fibromyalgia and the help I can give others all worthwhile.”

Kimberly Penix, Grace is Sufficient, Michigan:

What fibromyalgia has taught me | Fed Up with Fatigue

Kimberly, Penix, Grace is Sufficient

“Living with fibro has taught me how to keep things in perspective. I used to get so stressed over little things. I would be a mess over plans that didn’t turn out perfectly. If people were coming to visit, I had to clean and rearrange my house until I felt it was ready for a magazine photo shoot.

“But now I tend to go with the flow more often. When people come to visit, I do my best to make sure they feel loved and appreciated and that they enjoy our time together. I put things through my ’20-year test.’ Twenty years from now, will they remember that there were fingerprints on my front door? Probably not. But I hope they’ll talk about the lasting imprint my love for them made in their lives.”

Julie Ryan, Counting My Spoons, Alabama:

What fibromyalgia taught me | Fed Up with Fatigue

Julie Ryan, Counting My Spoons

“Fibromyalgia has taught me not to put things off. I plan ahead. I look ahead. I was once the girl who would put off an assignment until the day before it was due. Now, I’m the girl who starts an assignment the day it is given to me and sometimes even turns it in early. The early part doesn’t happen a lot, but it does happen, and that never would have happened before chronic illness. With chronic illness I’ve learned that I never know how I’m going to feel later. I can’t wait till the last minute to do something because I might not be able to do it. But, if I start it early, it will be done, and I won’t have to worry (less worry = less stress = less symptoms).”

Shelley Smith, Chronic Mom, Texas:

What fibromyalgia taught me | Fed Up with Fatigue

Shelley Smith, Chronic Mom

“Living with fibromyalgia has taught me that I am only human, and because of that I am going to make mistakes. No one gave me a manual on how to handle life with a debilitating illness. It’s hard being sick, and sometimes I don’t deal with it perfectly. There are times that the stress of being misunderstood makes me sad and angry, so I occasionally let myself feel those feelings. At the end of the day though I move on and forgive myself for not being perfect.

“Living with fibromyalgia has also taught me that I am strong, resilient and brave. I never knew how strong I was until that moment when my whole life crashed down, and I was left to pick up the pieces. When that moment occurred I realized that not only was I capable of surviving my illness, I had the ability to build a whole new life for myself. I know now that I am capable of doing hard things and that I am a warrior.”

Terri Sutula, Reclaiming Hope, Virginia:

What fibromyalgia taught me | Fed Up with Fatigue

Terri Sutula, Reclaiming Hope

  • Self-care has to be a priority – You may not be able to control your symptoms, but you can stack the deck in your favor by eating well, taking care of your mental/emotional health and keeping yourself moving.
  • It’s much more productive to concentrate on what you can do instead of what you can’t – Rather than mourning the things you can’t do anymore, focus your energy on doing the things you can.
  • Be kind to yourself – If you wouldn’t say it to your best friend, don’t say it to yourself. Avoid speaking negatively to yourself, and better yet, speak positively. If you have to, stand in front of your mirror and speak affirmations to yourself. You’d be surprised how much better you’ll feel!
  • It’s okay to say no – One of the best things you can do for yourself is to guard your calendar carefully. Choose to make commitments to those things that are most important to you, and let the rest go.
  • Life with fibromyalgia can still be a full, joyful life – Life with fibromyalgia won’t be the same as life without it, but you can still maintain healthy relationships, be involved in your community and experience moments of joy every day. Do adjustments have to be made? Absolutely, but you just learn what works for you and what doesn’t, and go from there.

Melissa Swanson, Fibro Warriors ~ Living Life, Wisconsin:

What fibromyalgia has taught me | Fed Up with Fatigue

Melissa Swanson, Fibro Warriors ~ Living Life

“One would think it would be difficult to list positive things/lessons that I have learned living with fibromyalgia. The definition itself does not lead to happy thoughts. It is defined as a common and complex chronic pain disorder. Chronic being defined as persisting for a long time or constantly recurring and in this case meaning forever. Surprisingly, living with fibromyalgia has taught me positive life lessons. It has taught me to live life to the fullest and keep pursuing the things that make me happy. Top 5 lessons learned:

1. Take care of yourself – One example is when I get home from work or on weekends, it is important that I lay down and take a nap. I need the extra rest to recharge, which allows me to do activities in the evening or be ready to face Monday morning.

2. Asking for help reveals strength, not weakness – Asking for help and offering help to others can build strong relationships you can rely on when you really need help.

3. Take one day at a time – Appreciate each day, deal with things as they happen and not worry about the future.

4. Take a break – Taking breaks between activities instead of overdoing it without breaks may mean that you’re able to participate in more without feeling exhausted.

5. Be your own advocate (If you don’t, who will?) – I believe in being your own health advocate. I research my syndromes/diseases, medication and integrative therapies. No one else knows how I feel, what is working and not working and what I would like to change.

Nicole Welch, Pennsylvania:

What fibromyalgia has taught me | Fed Up with Fatigue

“Living with fibromyalgia has taught me my strength, [to] be present in the moments that matter and to appreciate my blessings. Family and friends whose love, support and laughter provide the fuel I need to fight back. Thank you, fibromyalgia.”

 

 

Now it’s your turn: What has living with fibromyalgia taught you? Share in the comments! Please consider sharing this post to your social media today to raise awareness of fibromyalgia. Share buttons are at the top and bottom of this post. 

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Comments

  1. Tracy Dumka says:

    I have fibromyalgia and Chronic Fatigue Syndrome. They came on about 13 years ago, after repeated traumas in my life. I was one of those people that could go all night, sleep a couple of hours, go to work & then head to the gym, or soccer practice or to the pool to do 100 non-stop laps & then maybe a run aftewards! I never, ever felt tired. It was a HUGE adjustment to go from single Mom, super nurse, & super athlete to being mostly at home, on the couch, or in bed. I lost my beloved career, my financial security, my social life, my ability to be physically active among other things & went through severe depression. Luckily,I’ve always been a learner & love to read. I began reading books on Buddhism, spirituality, self help & I slowly started to see life from a different angle.. As I grew in understanding about deeper, more essential things in life, i began to be more accepting, more at peace with the way things were & found a measure of joy at being alive. Yes, when I’m very I’ll with a severe exacerbation of CFS & I feel like I’m actually dying & it goes on & on, & I’m totally isolated (my family has never acknowledged that I’m I’ll) & it’s the dark of winter, I get depressed, but I always dig deeper into myself for strength & I pull through. I guess it’s taught me that I am a lot stronger & more resilient than I ever thought possible! Am I glad I got sick, of course not, but the lessons I’ve learned along the way have been eye opening & enriching?

  2. Avril Wessels says:

    I am still ‘learning’. I’ve been struggling for 35-years and was only told that its fibro around 18-months ago. To date, what I’ve learnt is mainly negative: no-one understands or is willing to; no-one really cares even tho they profess to, etc. I am however thankful that I’ve discovered the under-lying cause of my ‘hypochondria’ so that I am now able to do and experiment with the many ‘things’ which could be helpful to me.
    I wish to thank all of you who take the time to post about fibromyalgia, those of you who share your experiences and advice of what works for you…I thank you ALL. You have no idea the great source of encouragement you are.

  3. Grant says:

    I have 3 main learning’s thus far (~4 years into official diagnosis).
    1) Selfishness. There is a far greater requirement to place ones own health and wellbeing at the very top of your life list then prior to Fibro development. Altruism (placing others needs above and or to the detriment of ones own) may seem a noble notion however in reality is completely self defeating regarding fibromyalgia. Nothing can come before your health or everything else falls apart through near total loss of functionality and pain immobilisation.
    2) Self Control. The level of diligent self control required to successfully manage the condition at some level is beyond anything I had ever known previously. One extra hour up at night, one gluten containing cookie, one serve of inflammatory dairy, one alcoholic drink, one stressful event, can have negative ramifications and is the hardest thing for me to manage. I’m not the average Fibro sufferer, I’m male, former athlete, high achiever, able to stay out with the boys till all hours and still get up and perform early morning, day after day, always managed to cope. God that’s was a whole other life-time. I still find it so difficult surrounded by a group of males enjoying each others company and having to pass on literally everything. As one friend remarked only half jokingly, ” Buddy we make an exception for you, but you might have to find a new group of friends, this no partaking of anything just doesn’t cut it around here and you know it.” Some make an effort, but none really get it. “You’re a man, harden the f**k up”. I’m diagnosed severe level and have it all, migraines, nerve pain that makes it feel like you’re actually burning internally, golf ball sized lumps of muscle, diagnosed IBS, diagnosed GERD, diagnosed Ulcerative Proctitis, diagnosed Pancreatitis, diagnosed Synovitis and much more, which all involve inflammation and immune system response. My whole system is in complete melt-down, but as a man who shouldn’t show weakness, to look at me in a short time frame you wouldn’t know. To go from being a fit over achieving male to this is a complete loss of identity, role and soul. (Sorry I digress)
    3) Real friends (including partners). I had been the big bread winner my whole life, worked ridiculous hours and had a partner who worked one day a week and lived the life of Riley with one school aged child when it all came crashing down. Eventually even the family doctor pleaded with her to ease the burden and go back to work to help ease my load or I was heading to an early grave. Her precise words were. “My commitment to you only goes so far”!!, she was enjoying the lifestyle I provided and refused the pleas of myself and even our doctor to step up and help. That’s really learning who your friends are. There have been others who used to rely on my abilities to over achieve who’ve fallen by the wayside. It’s been a tough lesson.

  4. I have had Fibromyalgia for 25 years, and for the first few years of pain I didn’t even realize what it was because there was so little information back then. I kept going to the chiropractor but relief was temporary. The most important thing I have learned through these years is patience, that there is an ebb and flow with this condition. In the beginning it started with chronic neck pain and in the following years spread throughout my body. I have tried everything I could think of and these are the things that have helped me the most: Clean eating, no gluten, organic vegetables and quality meats, no sugar, wonderful smoothies sweetened with Sweetleaf Stevia drops, two green drink a day (using organic freeze-dried or juicing fresh), and ginger Kombucha. I have found that the chlorophyll in green plants is so healing and relieves inflammation. I take fish oil every day. Minimum of 8 hours of sleep at night – more if I need it. I find time alone to recharge is absolutely vital. I help with 5 young grandchildren and have my own fabric business – but I pace myself – and when I’m tired, I sit and rest. I am kind to myself. I soak in a tub with epsom salts each morning to start the day more relaxed. I get a massage every 3 weeks or so. It also has helped to find a hobby that I am passionate about – and quilting is that for me. And last and most important of all is my faith in God and my relationship with Him – that I know He is in control and that all things will pass. But I think positive and am grateful for each new day and the adventures that lie before me. I’ll soon be 67 and I think I may retire in about 10 years – no rocking chair for this grandma. Fibromyalgia is a challenge, especially when combined with arthritis, as I have – but there are worse things to bear in this life, and I’ll bear this cross with humility and patience – and won’t let it control my life.

  5. Miffy says:

    Fibromyalgia is an ongoing learning curve but the thing I learned that led to most improvement is knowing that symptoms relapse and remit, they change intensity and take turns as the day progresses. Knowing this helps me to be less reactive or attached to them and trust that theywon’t stay this bad and to enjoy the better times. Mindfulness practice helps with this.

    • Avril Wessels says:

      Thank you for this…I was beginning to wonder if my mind is playing tricks on me as I also experience the changes you refer to.

  6. Julie Bridges says:

    I have learned so much, but the main thing I learned is that, for me, fibromyalgia takes what I will give it. I refuse to give it anything else. I accept a new reality for myself that includes daily pain. With my faith in God, He will give the strength I lack. I love my work so I won’t give in, since making this realization my life has been easier and better. I give myself time and grace, but I won’t ever give up!

  7. Cindy Cirlincione says:

    What has helped me the most is my faith in God, the support of my partner, Julia Moton, a clear light healer, eating gluten, dairy, soy, wheat and sugar free, taking the proper supplements, kundalini yoga and meditation, exercise, walking in nature, being with friends and doing activities during the week and weekends. In the beginning of my God, it was unbelievable, beyond belief, the pain was a 10plus, I saw so many doctors, holistic, naturopaths, all sorts of supplements, herbs, diets, acupuncture, chiropractor, oh the list goes on, it was a death sentence and I had to go on medication it was so bad. I am doing so much better today, God hears us and loves us so much. Be your own best advocate and ask for help, help is there.

  8. Nicolé Welch says:

    What an honor being quoted among some of the very people whose blogs guided my journey from diagnosis through learning how to live with a chronic condition.
    The knowledge I’ve gained their shared experiences and and research makes the path less dark for all who follow, thanks for helping to light the way.

  9. Fibro has taught me that life very often doesn’t go the way we think it will. I was very active in my church and community prior to Fibro developing 16 years ago, and it is progressively worsening as more and more adverse food reactions and weather changes are triggering awful migraines. The back of my head always hurts at some level BC I had an epidural that went awry. I grieve over my loss of being active and over feeling so much pain.

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