I was diagnosed with fibro about a year ago, but my symptoms have been coming on for the last 5 years. I'm on long-term disability because of the severity of my daily pain. I miss the girl I used to be. She was a dancer. She danced professionally in a tribal bellydance troupe, did fire dancing, latin/ballroom dancing, yoga, pilates and zumba every week. She would exhaust people just telling them what her weekly schedule looked like. But then something happened and everything changed. Her body betrayed her and she died; I was born in her place. I weight 50lbs more than she did, my hair is frizzier, my memories are a little worse for wear so I keep my notebook on me at all times. I can't stay active like she did. I'm lucky if I can take a long walk to just keep my muscles moving. I tried to keep working, but as my pain levels increased, everything I used to be able to do slowly faded into a misty, depressing memory. I'm now on long-term disability which will run out this October. I'm trying to take stock of how I feel right now. Do I think I'm capable of handling a regular work schedule? No. Do I think my pain levels are/will decrease in the near future? No, they have been slowly increasing in level. But because of the stigma surrounding my diagnosis, do I have the right to request permanent disability? Is it right? Half the medical profession doesn't seem to take it seriously, so how can I say that I don't feel like I can or will be able to work in the future when the medical profession still sees FMS as a "fake" disease, only in the head of the patient.
Thoughts, feelings, comments, advice? I'd be interested in seeing them.
Thanks and Blessed Be!
Cali
1 comment:
You sound much like me! Active, career mom, dancer, zumba, yoga, etc......Yes we are different now but I have finally found great team of doctors who have helped me cope with the fibro. Turns out I have a huge sensitivey to gluten which causes major inflammation in fibro. If I stay gluten free, low dairy, low suger, away from chemical, and everything else that bothers the fibro it helps me get through the days and be able to take care of my kids while trying 24/7 to put healthy healing fibro anti-inflammitory foods into my body. No msg, hardly any processed foods...The only exercise I can do is hot yoga and I totally embrace it and use it to heal me. I take melatonin nightly to make sure I get my 10-12 hours of fibro restorative sleep. I cannot work. I hope someday I will again. My whole life revolves around healthy healing and healthy living. I have filed for SSD and hope to hell I get it because it has been a rough yr without income! My husbands salary has been quite supportive but I miss my days of mani's and pedis little luxeries like that. I find it hard to do those things myself behing in pain. The organic healthy foods I need to heal are expensive and so is the yoga so it is hard to keep up with trying to get better to possibly work again someday when your health insurance doesn't cover what you need to get healthy. I wish you the best and remember you can change 1 thing a day it can lead to life again with Fibro living vibrantly :-)
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