I don’t know of anyone with fm who holds down a full time job. The few fm sufferers I know who work do it part time. And ohh believe me I know why.
My typical Saturday morning suffering is the cumulative effect of pushing my body to work a normal job like normal, healthy, non-fibromyalgia stricken people.
Once upon a time I used to have dreams of being an award winning journalist whose fearless reportage would help those needing it most.
I used to.
But fibromyalgia constantly gave me a bitter reality check, and as much as my mind wanted to, my body didn’t permit.
Tough!
There was a time though when my stubbornness refused to give in to fibromyalgia and give up the only thing I’ve ever done since I was 16.
Debilitating exhaustion caused me to fall asleep constantly throughout the work day: to and from work, in the office at my desk, on the way to assignments, and AT assignments. I was particularly prone to zzz’s when politicians opened their mouths to spurt inane psittacism.
Then there were days when dizziness enveloped me and I felt trapped in a haze. There was the pain, anxiety, inability to concentrate, and understand even the simplest of things. And that wasn’t all.
It was painstaking. It still is.
I managed to scrape through my last, steady job as a broadcast journalist, just barely. But I didn’t want to just scrape through. I wanted to give it 200%!
It hurts just thinking about it. I wanted it so badly, and I tried so hard.
I’m sure there are ways it could be done, but not without supreme challenges and super understanding bosses. The latter I’d found hard to come by.
Redefining Goals
Despite the challenges, denial and stubborness (again) I persisted.
I struggled through university (twice) to earn my BA, then MA in media studies and international journalism. Two international journalism stints, and couple years later, I realised that fibromyalgia couldn’t compete with the fresh faced, high energised youth willing to work 14 hour days, chasing stories against deadlines in the fast paced newsroom.
So, I (kinda) finally called it quits, as it pertains to a full time journalism job, and decided to find other ways of making a difference in this life.
I’ve since landed my first stable, non journalism post, and I quite like it.
I’m still plagued by the usual suspects, but I am finding it easier to push through these days, one day at a time (hour by hour).
It is as much a mental struggle as it is physical: constantly encouraging myself and pushing my body beyond the limit.
By Saturday morning, I’m resigned to laying flat in bed all day. Sometimes I do, but if I did this always, I’d get nothing else done in my short life and there is much to do.
So I try to get out at least one of the days on the weekend, and make sure i have a full day to rest in preparation for the work week ahead.
I can’t not work. But having a job that’s easier on my symptoms and one I enjoy does help. I’m saying this to say that any of you fibromites who want/need to work as well CAN do it. You just need to find a job where you can pace yourself. Still, it won’t be easy but it is achievable.
I work full-time as an IT Systems Analyst and every single minute is a struggle. I identify with all your symptoms, but the pain, tieredeness, insomnia anf fibro fog make it so hard to get through each day. Memory seems to be almost non-existent as well an in a job that needs an eye for detail, things get tricky. House falls apart until Sunday night when I can finally do a couple of things, so yes, no money, no life, almost no friends and if you mention anything about symptoms at work…..
I really empathise with you. Fibro fog is alos another killer for me as well, even if I write everything down. Without you saying, I also understand your concerns about mentioning anything of the sort at work. Be encouraged hun. I rarely go out as well and when I do Im so anxious all the time. Nevermind, we have to keep on trying:) Gentle hugs x
Glad to hear you are managing in new job Alish. I can imagine how hard it must have been to come to terms with giving up journalism. I do feel you will find other things just as fulfilling in your career though 🙂
I work full-time as a software developer, but I had to laugh (in self-recognition) when I read your comment about falling asleep practically anywhere. Today alone I fell asleep twice at my desk (had to get up and walk around to wake up), and once in the bathroom! Sometimes, I wonder how long I can keep this up. It’s awesome that you’ve found a new path, I often wonder if I stopped working full time #1) how on earth I would pay the bills, and #2) what on earth would I do with myself? I’m glad you’ve found answers, and hope they work for you.
Hi Robin:) I’m happy you were able to laugh about falling asleep everywhere lol. Do you fall asleep on the trains as well? many times I’ve come close to missing my stop anc actually missed it once! I’d be bopping my head like I’m drunk! lol. When I feel that tired I wonder the same…how long can I go on like this and I’d often get depressed over it. But I need to work to pay the bills like you and I think if I didn’t force myself too, not working would actually worsen my depression. Sometimes I do of course feel sad that I’m not doing something more fulfilling towards my dream career but I think that’s why it’s important to find other things that you can do in your spare time towards your goals.
Hi!
I have enjoyed following your blog – for this reason, I’d like to nominate you for the Sunshine Blog Award. For details on how to accept, check out http://fibromodem.wordpress.com/2012/07/27/im-walking-on-sunshine/ (but not ‘til after 11am my time as I have scheduled my post)
FibroModem.
Not everyone can work, even if they have to. I’ve been homeless and penniless many times because I was too exhausted to hold a job.
Now, I finally found a job that works with my symptoms. (I work from home and have a VERY flexible schedule.)
It seems to me that many jobs could be done largely from home, but employers don’t want to make that accommodation/adjustment. I guess there are plenty of healthy people out there, so why bother going out of their way to employ a disabled person?
I had this one friend who knew me during one of many times when I didnt have a job and was down-and-out, and he kept telling me, “Well, at least you have your health!”
If I had my health, I would be operating on someone’s brain and driving an expensive car to my expensive home in a gorgeous neighborhood, not bumming a ride to get back home to a cheap apartment around the corner from a methadone clinic!
Agreed Salina. NOt all of us can work. Our symptoms do make it very very difficult. Most people don’t understand this at all.Not even the state, as many sufferers I know struggle to get the required state help although they are entitled to it.
I work as a part-time on-site apartment manager. On the side, I am teaching myself how to make websites. I have made websites for two people so far. I hope to get good enough to earn a good income doing that. Right now I don’t have much money, much of a life or many friends.
I finally let go of my dreams of becoming a neurosurgeon or a green architect.
It feels like fibromyalgia robbed me of my birthright.
But it also taught me the value of health, which I took for granted, and that the most important thing in life is people, not money. It also saved me from alcoholism since I couldn’t afford to continue drinking like a fish.
Fibromyalgia took my life and saved my life. It set me on a new path. And I really don’t mind so much anymore. I am finding new ways to express who I am.
It is frustrating, but my brain likes a challenge.
Amazing and inspiring comment Salina. In alot of ways I struggle too, financially, with social life and getting by day by day but fibromyalgia does make you value things a whole lot more. Because I know everytime I read a book, write, go out, work etc… all these things require an exceptional effort on my part. It can be depressing but it does teach you a whole different value to life and things once taken forgranted. I hope you are well nowadays dear 🙂 and be encouraged in learning to build websites… Im sure you’re great at it 🙂 x
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I work full-time as an IT Systems Analyst and every single minute is a struggle. I identify with all your symptoms, but the pain, tieredeness, insomnia anf fibro fog make it so hard to get through each day. Memory seems to be almost non-existent as well an in a job that needs an eye for detail, things get tricky. House falls apart until Sunday night when I can finally do a couple of things, so yes, no money, no life, almost no friends and if you mention anything about symptoms at work…..
Hey hun,
I really empathise with you. Fibro fog is alos another killer for me as well, even if I write everything down. Without you saying, I also understand your concerns about mentioning anything of the sort at work. Be encouraged hun. I rarely go out as well and when I do Im so anxious all the time. Nevermind, we have to keep on trying:) Gentle hugs x
Glad to hear you are managing in new job Alish. I can imagine how hard it must have been to come to terms with giving up journalism. I do feel you will find other things just as fulfilling in your career though 🙂
Thanks so much Nikki!:) it was hard and a long road to accepting reality, but you are right!
I work full-time as a software developer, but I had to laugh (in self-recognition) when I read your comment about falling asleep practically anywhere. Today alone I fell asleep twice at my desk (had to get up and walk around to wake up), and once in the bathroom! Sometimes, I wonder how long I can keep this up. It’s awesome that you’ve found a new path, I often wonder if I stopped working full time #1) how on earth I would pay the bills, and #2) what on earth would I do with myself? I’m glad you’ve found answers, and hope they work for you.
Hi Robin:) I’m happy you were able to laugh about falling asleep everywhere lol. Do you fall asleep on the trains as well? many times I’ve come close to missing my stop anc actually missed it once! I’d be bopping my head like I’m drunk! lol. When I feel that tired I wonder the same…how long can I go on like this and I’d often get depressed over it. But I need to work to pay the bills like you and I think if I didn’t force myself too, not working would actually worsen my depression. Sometimes I do of course feel sad that I’m not doing something more fulfilling towards my dream career but I think that’s why it’s important to find other things that you can do in your spare time towards your goals.
Hi!
I have enjoyed following your blog – for this reason, I’d like to nominate you for the Sunshine Blog Award. For details on how to accept, check out http://fibromodem.wordpress.com/2012/07/27/im-walking-on-sunshine/ (but not ‘til after 11am my time as I have scheduled my post)
FibroModem.
Not everyone can work, even if they have to. I’ve been homeless and penniless many times because I was too exhausted to hold a job.
Now, I finally found a job that works with my symptoms. (I work from home and have a VERY flexible schedule.)
It seems to me that many jobs could be done largely from home, but employers don’t want to make that accommodation/adjustment. I guess there are plenty of healthy people out there, so why bother going out of their way to employ a disabled person?
I had this one friend who knew me during one of many times when I didnt have a job and was down-and-out, and he kept telling me, “Well, at least you have your health!”
If I had my health, I would be operating on someone’s brain and driving an expensive car to my expensive home in a gorgeous neighborhood, not bumming a ride to get back home to a cheap apartment around the corner from a methadone clinic!
Agreed Salina. NOt all of us can work. Our symptoms do make it very very difficult. Most people don’t understand this at all.Not even the state, as many sufferers I know struggle to get the required state help although they are entitled to it.
I work as a part-time on-site apartment manager. On the side, I am teaching myself how to make websites. I have made websites for two people so far. I hope to get good enough to earn a good income doing that. Right now I don’t have much money, much of a life or many friends.
I finally let go of my dreams of becoming a neurosurgeon or a green architect.
It feels like fibromyalgia robbed me of my birthright.
But it also taught me the value of health, which I took for granted, and that the most important thing in life is people, not money. It also saved me from alcoholism since I couldn’t afford to continue drinking like a fish.
Fibromyalgia took my life and saved my life. It set me on a new path. And I really don’t mind so much anymore. I am finding new ways to express who I am.
It is frustrating, but my brain likes a challenge.
Amazing and inspiring comment Salina. In alot of ways I struggle too, financially, with social life and getting by day by day but fibromyalgia does make you value things a whole lot more. Because I know everytime I read a book, write, go out, work etc… all these things require an exceptional effort on my part. It can be depressing but it does teach you a whole different value to life and things once taken forgranted. I hope you are well nowadays dear 🙂 and be encouraged in learning to build websites… Im sure you’re great at it 🙂 x