My story about Fibromyalgia
A little about me- I am 39 years old, and married. I am a “Stay-at-Home” mom of three children.
And I am Disabled… I have been disabled since I was diagnosed at the age of 24. My children are teenagers now- but at the time of my diagnosis (and heart surgeries), they were five, three & nine months old.
Most people who know me are aware of this, most people are thinking what?! At her age? She looks just fine! WELL, let me tell you something….
Along with what I am writing about- Fibromyalgia, I also have had two Heart Surgeries (which is most likely what “set off” my FMS) and now have an artificial Mitral Valve, I have had Hip surgery, (and now arthritis in that hip) I was also diagnosed with Degenerative Disk Disease. I have a lot of other little unmentionables, that all add up to one big pain in the bum…
I had a bad experience just recently and want to share my story, mainly to bring Awareness…
I was given a Handicapped parking permit by my doctor- I use it only when absolutely necessary- if I am having a bad pain day or short of breath, weak etc.. Otherwise, I just try to find the closest parking space.. But this day, when I got out of the car, not only did I get a “scowling” look from two women who were passing by, (both elderly) I over heard them talking and what they said really stung. Something about “how doctors are just passing out the permits, to anyone who wants a “free pass” to parking closer to the entrance..The other woman said “she looks like she could make it across the parking lot running if she wanted to- what a shame…”
As I said, it really stung- my cheeks were burning and I had instant anger. And although I just bit my tongue and got in the car. What I really wanted to do is shout out loud: “NOT ALL DISABLILTIES ARE VISIBLE!!!” Please don’t judge me because I am not using a Cane or in a Wheelchair!!”
Please, if you would, take a few moments to read my message and show this message to anyone you know- especially if you, or a loved one has FIBROMYALGIA!!
How Does FMS Make Me Feel?
My pain: My pain is not your pain. I cannot work my pain out or shake it off. It is not a broken leg or arm that I can look forward to healing soon. It is not even a pain that stays put. It is considered a “Migrating” condition, similar to RA. Today it is in my back & arms, but tomorrow it may be in my hip and legs…
My Fatigue: I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but can’t. Please do not take this personally. If you saw me at the grocery store yesterday, but I can’t run errands or go to your house today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles the day before..
My Forgetfulness: Those of us who suffer from it, call it “fibrofog”. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation or days on end in pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
My Clumsiness: If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life- and stairwells one step at a time.
My Sensitivities: I just can’t stand IT! “IT” could be any number of things: bright sunlight, loud or high-pitched noises, odors etc.. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream in the grocery store, I really can’t stand IT.
My Intolerance: I can’t stand heat, or humidity. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
My Depression: Yes, there are days when I would rather stay in bed or in the house or die (figuratively). Severe, unrelenting pain can cause depression, but it is a result of the Fibro- not a cause of it. Your sincere concern and understanding can pull me back from the brink. Your snide or cynical remarks can tip me over the edge.
My Stress: My body does not handle stress well. If I had to give up my job, and stay at home, it is not because I am lazy. I am not a stay-at-home mom as I wished to be. I am Disabled. And because I do not have the luxury of going to work, I stress even more. Everyday stresses make my symptoms worse and can incapacitate me completely- even as bad as not being able to make a simple phone call..
My Massage: If I get a massage every day from my husband, don’t envy me. My massage is not your massage. Consider how a massage would feel if that “Charley horse” you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is filled with painful knots. If I can stand the pain- regular massage can help, at least temporarily.
My Good Days: If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or even weeks. In fact, the good days are what keep me going.
My Uniqueness: Even others who suffer from FMS are not all alike. That means they may not have all of the problems mentioned here, or they may have worse symptoms. I have pain in my lower and upper back areas, which has lasted for a very long time. I have migraines two to three times a month, EVERY month. But I do not have exactly the same pain as anyone else.
My Sick is not Your Sick: When you’ve got the flu you probably feel miserable with it, but you know it will eventually go away. I feel like I have had the Flu for years and years. I work hard at not being grumpy. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please, don’t say, “Oh, you’re sounding better!” I am not better, I am sounding happy.
My Tolerance: Being able to stand up for ten minutes, doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday- doesn’t mean that I can do the same today. With a lot of conditions you’re either paralyzed or you can move. With this one you never know from day to day, which it’s going to be…
My Mobility: “Getting out and doing things” does not make me feel better, and can often make me seriously worse. Telling me that I need to exercise, go for a swim or a walk, may frustrate me to tears, and is not always correct. If I was capable of doing these things, believe me, I would. Obviously FMS deals directly with muscles, and because our muscles don’t repair themselves the way your muscles do, this may sometimes do far more damage than good and could result in recovery time in days or weeks from a single activity.
My Strength is not Your Strength: Some days you may see me moving & rearranging furniture or carrying two 12-packs of soda in one hand (I am normally pretty strong) But most days, I cannot lift my coffeepot or open my creamer lid. This angers and frustrates me, because I am normally strong and a very independent person- the two ends of the scope do not mix well…
My Nerves are not your Nerves: I don’t mean the “stress” kind of nerves. I mean my nervous system is wacked. You know when you get those little itches or tickles, but you can’t scratch them or they are “under the skin” and cannot be relieved? Now imagine hundreds all at once- all over. Sometimes it is a sudden shot of pain, others it is a pain that lasts for days. My lips tingle and feel like a Dentists “nerve block” is just wearing off. My fingertips go numb and I drop things. And worst of all- sudden and/or chronic nerve pain in the teeth/mouth..
How You Can Help:
(this goes for helping others with FMS, RA or any “invisible” disease!)
In many ways I depend on you…
- I need you to talk to me when I am too sick to go out. You’re my link to the outside world.
- Pass the word! If someone you know has Fibro- especially now that you know what they may be going through.
- Ask if you can go to the grocery store for me, send me a pre-made dinner or pull my weeds.
- Don’t stop inviting me, although most days I will decline, there may be that one day I can!-Know that FMS is not gender specific.
- FMS is usually hereditary- just ask my mom, sister and aunt.
But mainly, as much as it’s possible, more than ANYTHING, I just need you to understand and to KNOW:
NOT ALL DISABILITIES ARE VISIBLE!!
Help get the word out! May 12 is
Fibromyalgia Awareness Day!
Visit: The Fibromyalgia Crusade