Posted by: Jessica | June 30, 2010

Living with chronic pain

One of the most frustrating things about living with fibromyalgia is the balancing act. Being who I want to be without compromising. I value working and working hard – but when I wake up and every cell in my body aches and burns, how do I work? How do I push through the day when I know if I push too hard, I’ll feel worse the next day? Fibro makes me feel lazy. It makes me feel like I won’t be able to succeed where I want to.

It’s frustrating when I feel like I can’t tell people. For some reason I still have a hard time telling people if I don’t tell them early on. It changes the way they treat me.

We joined a softball team. It’s been a lot of fun and it’s helped me be more active. So far I’ve been lucky in that I’ve been able to go to most practices and games without too much pain. But I wonder how they’d react if they knew, or how my other friends who know I have fibro will react when they hear I’m able to play softball. How is it I can play softball, but some days I can’t work or even take care of myself? I don’t understand it so how can I answer that?

I feel like I shouldn’t have to tell anyone, but when it gets to the point where one day a week I feel too sick to work, what do I say to my employer? I absolutely love my job – but when fibro pain makes it near agony to drive my car into work, sit at a desk, and type – what do I do?

I keep pushing, but I’m worried I’ll burn out soon. I really wanted a contract where I could work from home. This is the best job I’ve ever had, but I still can’t give it 100%. will I ever be able to? I wonder.

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Responses

  1. One thing you may be able to do with your job is to write a request and talk to you manager about reasonable accomodations and suggest that one of those be being able to work from home a day or two or more a week. Some employers would be open to that due to you having a medical reason and the fact that it will keep you working your job doing high quality work which of course makes them more money and therefore happy. You will have to do that anyway if you ever plan to take Reed to work with you so it might be worth giving it a try for this need now.

    I know what you mean about not wanting to give in and having really good days then having really bad days where you can’t even get out of bed. It is such a fluctuation that is so very hard for people who have never lived with it to understand. My family had a really hard time understanding it for a long time as do many of my friends. They can’t seem to fathom that there is a pay off. If I push myself for one thing then something has to give in another place. One thing that really helped some of them was reading The Spoon Theory. Have you ever read that?

    here is a link to it: http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

    Also that main site, But You Don’t Look Sick has a ton of info on it and is a really good site if you’ve never seen that one.

    Good luck with your struggles!

    • Since it’s a one year contract, I hadn’t planned on taking Reed – also theres not that much he would help with, I can get around the office okay, its just the pain aspect once I’m here.

      When I was looking for a new job, one recruiter asked me to do an interview. After interview 1, they wanted to do an second (a good sign). I then told them I would need flexibility to work from home or flexible hours due to a disability. They told me then they didn’t think the job was right for me. I was so upset I decided not to tell any more possible employers.

      I’d like to request some more flexibility but there are a few problems. 1 this is a contract job and my actual employer is not the one I report to- the company I’m at pays them, then they pay me. So who do I talk to? 2. The job deals with sensitive info and when I brought up working from home after I got hired, they said it would be too hard b/c of security.

      I’d also need to find a doctor and I don’t have insurance as a contractor. Haven’t been to a doc about the fibro in 3 years :/

      I have read the spoon thing, I like it.

      Ps : I’m thinking about you and James, best of luck.

    • Well after I typed all that I also requested a meeting with the boss, will let you know how it goes.

    • Hah they said yes! Thanks Katrin, got me off my butt about it!

  2. yeah! I am so glad you asked and they said ok! That is awesome!!! Sometimes it never hurts to ask!

    Oh and about accomodations. People have told me to NEVER request accomodations BEFORE being hired as job offers can easily be recinded before that point. Once you have been offered a job and accepted, then request in writing reasonable accomodations. The same way that during the hiring process or interviews even if you have a visible disability the potential employer is not allowed to ask any questions about it or how you would do the job because of it. Now that doesn’t mean they have to do exactly what you request if they do not think it is reasonable but they must come to some concensus with you so you get what you need while still being able to do the job.

    Thanks for the thoughts about James.

    • Thanks, your comment encouraged me to bring it up again. Apparently they’d remembered that my contract said I was to be given consideration after x months of work and my boss said since I have done such great work and she’s had only compliments, and since I live so far away, they were already considering it.

      Now I just have to wait for a laptop.

      I quickly learned not to say anything before getting the job after the first guy.

      When I was “headhunted” for this job I simply told them I would greatly greatly prefer to work from home (esp since it’s a distance) and they said they’d do their best to accommodate.

      Is it different if I’m a contractor rather than an employee? I’m on a 1099. The only thing I worry about is if I request something, then they decide not to renew my contract b/c they didn’t like having to deal with me 😦

      Was sorry to read the latest news about James. 😦 Still thinking about you guys all the time. (hugs)

  3. Hmm I am not sure if what the deal is if you are a contractor. I would call the DOJ ADA hotline and ask them. They would know.

    800 514 0301 is the number

    I have that number programed into my cell phone for any access questions too that may come up when I am out with my dog. I have never had to use it if a business or the police get really stupid but I know others who have.

    Thanks so much for the thoughts!


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