A Social Network for Men with Fibromyalgia, Chronic Fatigue or Pain
Finding happiness.
For the last few years, I have operated under the assumption that fibromyalgia and happiness were mutually exclusive. That is, until I found a "cure" for my condition, I would not be able to be happy. Of course, with this kind of logic, I am setup for failure from the start.
For me, fibro often feels like an insurmountable roadblock, and until that roadblock is gone, there is no point trying to get further down the road. So where am I now? Pretty much the same place I was six long years ago, when my problems with chronic pain first started. I turn 26 next week, but in some ways, I still feel like my pre-fibro, 19-year-old self is trapped somewhere inside. In many ways, I haven't been able to advance since then. Yes, I successfully graduated college - with a great GPA to boot - which gave me a much needed confidence boost to my fatigued brain, which was heavily taxed and overstressed by the demands and pressures of college. But as soon as that mission was complete, I became a wandering soul.
I moved to Washington, DC the autumn after my college graduation. I was excited to be in a new city, but I let my fears of impending doom overpower any positive feelings hiding away in my subconscious. My official reason for moving to the District - finding a job and starting a career - was both a distraction and a source of anxiety. I found that I had dueling ideas at conflict in my brain - the proverbial devil and angel on the shoulders.
The first feeling was positive: Don't let the pain win! Focus on starting a career and let that distract you from your condition. There are plenty of people with "worse" disabilities than yours so stop feeling sorry for yourself and live your life.
The second feeling was negative. Extremely negative. And it almost always overpowered the positive voice: Who are you kidding? You have fibromyalgia. There is no cure, and there probably never will be. Heck, most doctors don't even consider the disease real. Do you really think they'll develop a cure in your lifetime? And don't waste your time trying to start a career. You are disabled, and your condition will only get worse. In ten years time, you will be crippled; you might even be in a wheelchair. Just quit while you're ahead.
So, the negative thoughts ruled the day. And those days turned to months, the months turned to years. I discounted the positive thoughts as optimistic bullshit. The only thing keeping me alive was the lingering thought that maybe, one day, there was a small chance that everything could return back to the way it was.
Now, I realize that the above thought should not serve as my primary motivation for living my life. But what should? Right now, I live my life very much day-to-day. I do my best to get through a very tedious work week (currently working 60+ hours a week in two jobs with no sympathy for my condition), and then I start the whole process over again. I get no joy out of this lifestyle -in fact, I am generally miserable- and I am left with the question: What is the point?
So I ask everyone to reflect. What gets you out of bed in the morning? What motivates you to achieve your goals? Has anybody successfully gotten past that fibro roadblock? Because I am still stuck in traffic!
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Comment by Keith Cohen on March 8, 2011 at 9:02pm -
Well Rick,
I would say that God and my kids are my motivation for living. But i am 53 now and have had Fibro for 27 ears and I gotta tell ya honestly, it ain't getting any better. The older I get,the worse the pain and fatigue get. I coul sleep 24/7 and m sick of it. Exercising is a joke. It hurts to walk down the street for just a few driveways. I can barely throw a ball with my 15 year old anymore. I can't work a full time job. I have applied for SSDI benefits already. Thats exciting. My manhood has been extremely affected. Psychologists don't work. I know what the Bible says and its still hard. I definetly do not want to live a long life. I've had it. That may sound selfish, but I can't take this anymore. If you gave me a million bucks, it wouldn't matter. I know there are people worse than us. And I'm not trying to feel sorry for myself. Its just my quality of life has been drastically diminished. Everyday is all about just making it thru and surviving the day. I try to count as many joys in life as I can. I believe the world is ending soon based on the Bible and that is one of the things that keeps me going. One day, I'll have a perfect, painless body. I can't wait.
Keith
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Comment by vivek on February 26, 2011 at 3:10am -
I am 34 and I write software for a living and play with a band. I was never diagnosed with FM but "whatever it is" has significantly affected my form and function in past 6 to 8 years. As most of us have realized, it is a daily struggle. Some days are worse then the other...
The excitment of solving a tricky problem or managing software complexity or converting an idea into a song was what used to keep me excited in the early years...but I see that changing, slowly and surely...
In essence work is a great stress reliever and successfully distracts you from your discomfort. Both act of writing software and the act of composing and playing music are immersive so they take you away from this discomfort even further...only as long as your problem entity starts affecting the very core that is required to do these activities...the result being that I now work in reducing cycles with lots of breaks in between and use a cyanoacrylate adhesive on my fingers when I rehearse or perform with my band...I am unsure how long I will be able to pull this off...
Rick, you've got to find your threshold, your stipulated limits..violating them will lead you a vicious negative cycle...you're younger then us and I guess being in this part of your life has its own demands and pressures...but now I think what has become the most important thing almost for most of us is to find a new place for ourselves in this world...a place that is based on our sense of balance rather then one driven from outside or from mere perceptions...we will have to learn to do that, I struggle till today, mostly due to habits that are hard to change and a outlook on life that doesn't seem that positive anymore...needless to say this is my take on what we could do to be more at ease with ourselves and others in this world!
Dear HDC we would love to hear what you have to share with us...how about more surveys designed by our members only? A format that can bring more objectivity and is
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Comment by Gary James on December 18, 2010 at 6:57pm
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when i was first diagnosed with fms i was shattered and simply gave up. i lay on the couch for 3 months in pain. then one day a thought this is not getting any better. so i set about looking for a job that i could do in my crippled weakened state.
after a lot of searching i realised there is not a lot i can do. but? i can drive a car >>> just. so i went out and got a taxi drivers license and started to earn some cash again. even that was hard, as i found i could not sit for to long and i could not stand for to long. yet i seemed to find a balance that suited my condition. in between fares i would get out of the car and do some simple stretching and walk laps around the cab (must have looked weird to those looking on). after a yaer or so i noticed that i had improved. yet after 5 years i had not improved much more. so i found a heated pool nearby and started excercising and swimming early in the mornings when there were no fares for the cab. i started with 15 minutes in the water and after 18 months i had increased to 60 minutes and had actually grown some muscle back.
i dont drive a cab any more as i am a postman here in australia and i ride a small motorcycle to deliver the mail. and would you believe i have even grown some more muscle since i have been riding the m/c. thing is i love my job. and it keeps my mind active. and yes i am still in constant pain. and no i dont take any drugs for the treatment of fms. yet i suspect that to keep the mind active and to have small goals that can be achieved in my condition has been the key to improvement. i was in the cab for 12 hours a day 6 days a week, and now i am down to 5 days a week so i have every weekend to myself to rest and play. i do regular excercise but not a lot as i find to much leads to fatigue.
the hardest thing i can do is sit here and write as it is very hard to focus. brain fog is a constant
gary
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Comment by HDC on October 26, 2010 at 10:44pm
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Do you find that when your mind is busy that your symptoms become less prominent? I spend a lot of time reading and doing research on the condition and my symptoms. I find that when I am concentrating on an article that the symptoms are less bothersome and seem more distant. Has your condition worsened over time? I ask because there seems to be controversy on whether or not it is a progressive condition. Apparently having a support group and not catastrophizing is a good way to keep things in check. Reading your post I felt both compassionate for your distress and appreciative that you're willing to share your deepest concerns with the group. It could be that I have not read all of the old posts but I am still trying to figure out if folks in this forum have vastly similar or different symptoms. Did your symptoms come on suddenly or did you experience them earlier in life but with much less intensity? I have been reading a book which is a compilation of a lot of chronic pain studies. I am willing to share some of the more interesting points in this forum if folks are interested.
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