Yesterday was truly spectacular! My sister and I went to Eden Park in Cincinnati to watch Obama speak. We had a fantastic time; so much so, in fact, that I am going to be working on another page for my blog with photos and video of Obama I took, as well as news about him and a place to discuss it! It's going to be a huge part of the next six weeks' news, so it probably deserves its own page. Stay tuned over the next 24 hours for that page; I'll be working on it today!
As amazing as yesterday was, there were some serious consequences. I was under the impression that there would be chairs or benches or something for us to sit on. I was apparently mistaken. We were standing for hours on concrete steps once we got into the park. Before that, we were standing on the street outside because we were told that we had to take our camping chairs back to our car. All in all, we were standing or sitting on concrete for six hours.
As people were lining up to go into the park, there were volunteers taking people with walkers or canes into a different line. I asked one man if, since I have a chronic pain condition, I could get in that line, too. He said that it was only for people with apparatuses. I look completely healthy. So, this got me thinking: what does it take for a person with fibromyalgia to get the opportunity to get a chair? I started looking around online and chatted with a representative at americanmedical-id.com about it:
You are now chatting with 'Vanessa'
Vanessa: Thank you for visiting our website. My name is Vanessa. How may I help you?
you: Hi! I have fibromyalgia and was denied a seat yesterday at an event. I ended up standing for six hours and I am incapacitated today because of it. If I got a medical ID would that give me a shot at getting a chair next time?
Vanessa: That is awful to hear. I am sorry about that. Since all ID's are custom engraved we can have that info on any of the items
Vanessa: Have youhad a chance to browse the site? Do you see anything you like so far ?
you: Yes--I understand that I can get anything on it, I'm just wondering if people who haven't even heard of fibro will honor it if I show it to them.
Vanessa: I , unfortunately cannot answer that with certainty as everyone will react different to this information. Fibromyalgia is common and dont see why they would not honor it
you: Okay, thanks...I will talk to my fiancé about the IDs I like and I'll get back with you soon! :) Thank you so much for your help!
Vanessa: You are welcome.
So maybe this is an answer! I asked on a fibromyalgia forum what other people do. I haven't gotten any responses yet, so I will update this later with their answers and ideas.
I think that my experience yesterday, though, is a reminder to all of us with chronic pain conditions, whether it be fibromyalia or CFS or anything else, that we need to take care of ourselves and choose what we do that is outside of our comfort zones. Any time we do anything that is out of routine for us, we feel it. We have to think ahead of everything we want to do, "Is this going to be worth it tomorrow when I can barely get out of bed?" Now, I feel like yesterday was 100% worth it, but I also wish I had been able to have a chair. This experience also throws into sharp relief that not everyone is educated on fibromyalgia and we need to continue to share what we go through every day with more people.
Here are some good websites to go to if you would like to learn more about fibromyalgia:
Please raise awareness in your communities, whether it be in your neighborhoods or online. Fibromyalgia is real and needs to be made known. Maybe next time Obama is in town the "Fibrobama" fans will get a seat.
"Be the change you wish to see in the world." --Gandhi
Didnt you carry a tuba in marching band for 2 seasons strait?
ReplyDeleteYes, I did! You're not born with fibro, you develop it over time. I've been having increasing amounts of pain since about a year ago. I actually had to quit playing tuba altogether last October because my jaw was in so much pain and was diagnosed in January with fibromyalgia. No one knows why I have it or how to make it go away, so I'm working on learning how to live with it.
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