Next week I turn 52 — and I am amazed I’m this old. I’ve had some close calls, and feel very lucky to be alive. However, for some reason, I realize that I constantly feel fearful.
Reflecting on my life to this point, I realize how fortunate I am, but also how scared I’ve become. Growing up, I was shy and had a difficult time making conversation. Once I got to know someone, I’d never shut up. I do love to talk, but the brain fog from fibro has made me afraid to speak to pretty much everyone. I’m afraid I’ll say the wrong thing, or something idiotic, and end up embarrassed and angry with myself.
I’m also afraid of overdoing it and causing a flare. I have missed so many family get-togethers and other important events for that reason — because flares can put me out of commission for days at a time.
Likewise, I’m afraid of making mistakes at work. When I’m flaring, I can’t focus and have a terrible time functioning. I’m worried I could lose my job because I call in sick so frequently. Up until recently, my employer has been fair with me. But one day, I had to call in sick on an especially busy day; he became very angry with me and said, “we have to figure out your health.” It appears my days there are numbered.
What if my irritable bowel syndrome decides to rear its ugly head while I’m driving, or worse — in a meeting? I don’t want to eat before heading out the door because that could spell disaster. My fear of not getting to a bathroom in time has me ALMOST to the point of wearing adult diapers. To me that is a sign I am old, and I’m not ready to commit to that notion just yet.
My absolute biggest fear has been losing my husband. I don’t know what I would do if that happened. I’ve given this a lot of thought lately. How would I cope alone?
During this time of reflection, not only have I realized I am a big Fraidy-cat, but also that the fear is all in my head. The fact that I can’t control my body or brain isn’t the real culprit. It’s my fear of how others will react to me. It’s my fear of feeling embarrassed or foolish — or being pitied and ridiculed.
Fibromyalgia has transformed me into a fearful person who only knows how to say “no” to any invitation, event or get-together.
I used to be very positive and upbeat, and I want to be that person that again. But it’s hard to be positive when your health is failing and your body won’t cooperate. My negativity comes from the challenges of living with fibro.
I now realize I have to stop fearing what could happen. No one can predict the future. Why live in fear of actually living?
Time to pull up my big-girl pants and live again. I control my destiny. I know it will be tough, but I have to swallow my fears and get on with my life. I can’t let fibro hold me back any longer. Watch out world, here I come!
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Sorry to say it, but you should be afraid. You may wake up one day and discover your husband “just stopped caring about you because you got sick,” as mine did. You should be afraid of losing friends and family members as I have. You should be afraid of losing your career and your home. Mine are gone. It’s all gone. It’s a frickin’ reality for some of us. They say perception is reality. Well, in my case, reality is reality and it sucks. Big girl panties or no…be afraid. BE VERY AFRAID. And start planning for it now because if it hasn’t happened yet, it still might.
I agree with everything Denise says here. My mother had FMS, too, so I was aware of some of the things that might happen to me. Some of them have, but many more have just jumped on me and never let go. I, too, have IBS and am concerned about going anywhere that is distant from the loo. Small things in life become big when you are ill. Toss in chronic depression, headaches, many things that have nothing specifically to do with pain, too.
Everyone who has this disease needs to realize that the entire body will eventually be effected. Fibromyalgia is a CENTRAL NERVOUS SYSTEM ILLNESS, like ALS, MS, Parkinson’s. It is as serious, except there are few medications to help you, only things that will attempt to help the symptoms, but nothing that effects the brain, which is where all the trouble starts.
Doctors think that that hiding the probable future for a patient is best. I disagree. As this disease has taken over my life, I have lost everything: my husband, my job, every last thing I enjoyed doing I can’t do anymore. Travel, as one might expect to do in your elder years? Forget it. I can’t go 20 miles without that activity causing even more pain and for many more days ahead. I think if I had know what was going to do to me, I would’ve spent my energy doing things I enjoyed. I did some of that, but I mostly worked, loathe to accept that my working days, doing anything I could do, were over. I want to know the truth, so I’m writing a small amount of that here. I’m sorry anyone ever has this disease. So sorry.
Thankful you can still work. Fibro forced me out of the work field and many other things. I am 65. I am not in control of my destiny and always amazed when someone else claims to be in such control.
We are all different in how we cope.
Laughter and a smile can do amazing things. If you say something silly, laugh it off. People react better with positivity than negativity. Yes, fibro controls our lives, but we decide how to react. Love your husband, appreciate the things he does for you, even if it is only to make you smile. Being with a ” Debbie downer” is exhausting, and people react to that by avoiding and so forth. So yes, you do have some control- and you’ll find people will laugh with and not at you. People will pity you by your reaction. People react to us, by how we react to a given situation.
It’s true that “it’s not what happens to us that makes us who we are, it’s how we react to it that does.” My only caveat is to be PREPARED. Understanding what this illness can take from you will help prepare you for a future without!
On the point of diapers…. I am now 70. I wear them most of the time because I leak. It’s easier. I also use a walker (for the past 10 years). My body is getting old but I am merely getting older. I’ve lived in fear my entire life. Not using something to help you be independent because it may make you look old is ridiculous in my mind. It doesn’t make you old. It makes you independent. 🙂