Living with fibromyalgia sucks! There I said it…
But it is worth re-typing…
Living with fibromyalgia sucks
No matter how positive you think, or how mindful you are, there is just no way to dispute the fact that the illness sucks. Backwards and forwards. In and out. Up and down. All around; fibro stinks. Some days you wake up feeling deceptively great ready to take on the world. Most days you lie in bed angry, exhausted, and barely able to move wondering what you could have possibly done the day before to feel like you were ran over by a semi-truck.
You relish the good days but you also rue the good days since good days usually mean you’ve push your body too far. So you wake up the next day wishing the day before never happened.
You are constantly thinking ahead. Reshuffling your invisible spoons, rearranging your schedule, re-prioritizing what is most important to get done and what can be put off until a better day. Trying to mark one more item off your to do list before your body most certainly gives out on you. Then there’s the fibro fog and memory lapses. The jolts of pain. And the fatigue. Did I mention the fatigue? ( I might have forgotten). You don’t know unrelenting, indescribable, nonsensical fatigue unless you’ve lived with fibromyalgia. This post could go on and on but I’ll spare you. I think the point has been made.
September is Pain Awareness Month
And for those of you living with or knowing someone with a chronic pain condition, this post is written to help you better understand the emotional, mental, and physical toll that chronic pain takes on many of us living with an invisible chronic illness; specifically following a fibromyalgia flare.
Since my illness happens to be fibromyalgia this post is written from my personal perspective. But understand that many of these emotions, feelings, and perspectives are shared across different illnesses and it is my hope that by sharing just a glimpse of what is so often unsaid I’ll bring just a little more clarity on the complexities that come with living with a chronic illness.
For me though, what may be the worst part of living with fibromyalgia is the inconsistency of the illness. Even though I’ve lived with fibromyalgia for 7+ years; every day I learn something new. Each time I “flare” and feel increased surges of all my symptoms, it’s always like the first time since what causes today’s flare up might not be what caused the last one. You see these high tides of fatigue and pain are best known in the fibro world as a flare. What exactly is a fibro flare you ask? Thankfully I made a whole post about it.
What is a Fibro Flare?
Simply put :
“A flare is the worsening or exacerbation of symptoms that already exist,” says Daniel Clauw, MD, professor of anesthesiology, rheumatology and psychiatry at the University of Michigan in Ann Arbor. “Patients use different timeframes for what they consider a flare, but it’s generally several days or weeks of worsening symptoms. Anything shorter is considered normal waxing and waning of symptoms that someone with fibromyalgia can expect.”
You can learn more in my post here but what I most wanted to get across in this post is the emotional, mental, and physical pain that flares put on those of us living with chronic pain.
Inevitably, flares hit us during the most inopportune times. Perhaps due to the subconscious stress of an impending big event, the physical toll of a long day, or even a sudden change in the weather the most common emotion that hits us during and after a flare is guilt. Guilt that we’ve had to cancel an important event. Guilt that we called into work again. Guilt that you let your friends or family down. The problem with guilt is that it is taxing to our already taxed systems. It is also insidious and has been one of the hardest emotions that I personally have had to learn how to manage.
Immediately after a flare; you begin to feel insecure. Questions like Did I push to far, can I begin again, should I go back to work, and can I handle my life begin to surface. It is easy to feel broken, embarrassed, and full of self-doubt. Sometimes I feel like I won’t survive another flare and I wonder how I’ve gotten this far. These feelings can linger for days after a flare has subsided.
Pain is a mainstay with fibromyalgia. Pain is always there even when it is managed by medication. Pain is unnatural to our bodies and sometimes it is hard to know exactly when flare pain begins and ends. Learning to exist day to day with extremely high levels of pain is something that those of us with fibromyalgia have learned to do very well. This constant pain is unnatural and can be worse immediately before or after a flare.
How Can You Help
This is just the surface of what happens after a person with chronic pain experiences a flare. If you are a caretaker, friend, or associate of somone living with an invisible illness it can be difficult to know how to help or what to do when your friend experiences a flare. You may feel helpless and not know what to do or say to best help. Come back on September 24th to learn how you can help.
I am so glad I came across your blog today. I forget that I am not alone in the blur and flare. I feel isolated from those running around with all the energy and strength I once had. Saying no thanks to invites, until they finally stop coming. I think it is gone and I have found the new cure, only for it to wear off and a flare smack me in new ways. I am so so sorry you have to battle this illness, but I feel I have found a comrade in the midst of it all. STILL believing for our miracle, but feeling less alone in the moment.