Whenever I meet someone with Fibromyalgia:
Problems of an invisible illness.
If I don’t tell people about my POTS, CFS, and NCS, they think I’m lazy and unreliable; if I do tell them and explain when I can’t do something due to a flare up, they say I talk about it too much.
If I suffered publicly, no one would want to hang out with me. But because I suffer privately, no one believes that I’m really sick.
It’s just…tough sometimes.
I know that feels, friend.
I’m pretty sure that my roommate still doesn’t realize what Fibro actually is. I’ve mentioned it plenty of times when I’m not feeling well and she gives me this look like “wha?” SORRY I AM NOT THE ENERGIZER BUNNY LIKE YOU.
I sorta feel like this is my new jaw…
The extraction was three weeks ago, maybe four? The pain has hardly gone down, I have these bone spicule things, there’s joint, gum, bone pain. I still can’t eat hard (or sometimes even solid, period) food but once a day (if that) as I can’t fully open my mouth without like… Weepy pain. Is this normal? The doc gave me the impression that there was nothing they could do. I can deal with this, it’ll just take me a while longer to adjust. Anyone have experience with a SLOW-AS-HELL healing wisdom tooth? Am I just being impatient?
We often discuss the idea of “becoming a Health Activist” and how patients (and caregivers) go from empowered to advocating. That journey, itself, is unique to the individual but still has things in common across the board — and noting and drawing upon those commonalities is a great way to perhaps inspire others to become Health Activists, too. One of the ideas we’ve mentioned frequently is the concept of a Health Activist Mentorship program – where a more seasoned Health Activist would offer ideas, advise, and feedback to inspire someone who’s just starting off into the world of online health leadership. It’s a really great idea and, when I came across Julianna’s feature on her blog What The Jules called the “Blogger in Residency Program” – it was a true light bulb moment. I couldn’t help but see it as a real incarnation of that Mentorship. I contacted Jules to hear more about the program because I think it could be something that other Health Activists can bring back to their blogs and try as well. Here’s what we discussed…..
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The topic today is Stigma and Mental Illness. Join us at noon pacific/3pm eastern. Bring your examples of how you have been impacted by stigma in your own life. This can be because of a mental health diagnosis, or a depression comorbidity due to your chronic illness.
I HAVE THE RIGHT…
- to the full range of emotional responses to my experiences—from self-pity to gratitude and everything in between.
- to seek out information and advice from any source i can find.
- to follow or disregard any advice or recommendations i receive from strangers, friends and family, fellow sickos, books, or health practitioners.
- to seek relief or a cure, or not, as i see fit.
- to healthcare, including face-to-face visits with allopathic and alternative practitioners, prescriptions and supplements, assistive devices, fitness classes, and access to the information i need to make informed decisions about the potential risks and benefits of whatever i pursue.
- to any accommodations i need in order to have the option of participation in the public life of my community and the larger society.
- to define my level of availability to others based on how i feel and my assessment of my needs.
- to make plans and commitments with the understanding that i may be too sick to follow through on them.
- to address conflicts and disagreements in ways that honor the delicate relationship between stress and my well-being.
- to not be compared, favorably or unfavorably, with others who share any or all of my diagnoses.
- not to have to answer the question, “how are you?”
- to be appreciated for the contributions i make to my communities, even just by my presence.
- to be valued for who i am, not what i do.
written by me, billie rain
That awkward moment when you take your medication in public and people look at you like you’re taking illegal drugs
I just read something about someone having problems with Icyhot and it made me remember that I’ve been meaning to post something here about Tiger Balm. That stuff is a godsend. I can’t quite explain how it feels, but it smells wonderful and does wonders for relaxing my muscles. My mom can’t use Icyhot because it’s too harsh, and she’s been getting that since I was little. My massage therapist showed it to her.
I needed a plan. How was I really going to get away from them? If I could get into that nearby apartment I had put a deposit on, if I could manage to afford the rent every month and take care of Kelsey, I would have a chance. I think I was thinking too much about Kent when I picked that place out, so I tried too hard to spare his feelings. That’s probably how I got caught. The partment was too close, I wanted Kelsey to be near her father. I tried not to use too much money, I didn’t want it noticed. I took my time to keep it all cool and under the radar, keeping him cool. Of course I kept him happy, but now he was destroying me. But, I wondered just how miserable was he going to make my life? I think he showed me just how with his opening salvo: kidnap the kid.
I need to regroup. I think I need to call the troops back in, and I need a good strategy. I pick up the baby and go downstairs. More…
