Skip to main content

Day 7 HAWMC: Advocating

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.


I was excited to share my story. I am a reserved person in the world, but blunt on paper. So I tell my story and am as blunt as I can be. I want to share my experience, struggles, and suffering to see how it really is. To me it was a matter of just being honest with people. There are people out there like me and I didn't want them to feel isolated. I wanted them to read me and say 'Me too' and 'that is so me' and not feel like they were the only ones suffering like that. 

I started advocating by writing more specifically. Choosing more carefully and in a guided fashion what I was going to write about. Covering research at times. Writing articles for other sites. Guest blogging for sites I liked their work. Recently for the Mighty. Publishing articles with various ezines. Working for a bit on a ezine with fibromyalgia information articles. Admining support groups and helping with content creation. I am came for everything and anything to help the community and to spread awareness. But yes I definitely worked a lot on my blog specifically and will continue to do so.

It was an easy decision and I will keep doing it because it is important to me. Those of us with chronic pain need a voice these days. Those with chronic illness need a voice as well. The more voices we get out there the better it will be for us all.


Post a Comment

Popular posts from this blog

Signs the pain is getting the best of you

100 Symptoms of Fibromyalgia

There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway it is around but I'm posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the wide-spread pain, but our pain isn't just muscle pain... it can be nerve types of pain as well, and the fatigue and the insomnia. And even among symptoms there are some far more frequent than others, but it should be said we have categories... like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. The insomnia... more than one sleeping disorder. So the list is interesting.

__ Fatigue, made worse by physical exertion or stress
__ Activity level decreased to less than 50% of pre-illness activity level
__ Recurrent flu-like illness
__ Sore throat
__ Hoarseness
__ Tender or swollen lymph nodes (glands), especiall…

Getting through the high intensity pain flares #Blogboost

The crowded me out of the brain. Making no room for anything else. Distraction was impossible. You feel almost frantic with the pain but must be still.

What do you do? To get through it when you have no distraction?

I ask me this as I am really in the depths of a 9 level frantic level of pain right now. Hoping maybe some writing will be a distraction, but it isn't. As I said, the pain crowds the brain. I have to focus real hard to write and my head isn't clear. Too much pain to focus well. Things become quite difficult to do. 

I will say this: We cannot function. We have to just cope with the pain.

But we are Immersed in the pain, we what do we do?
We can and should rest and get through it the best we can. Here are some of the things I do to get through it.

Relaxation breathing: I can't meditate when in high levels of pain. It just makes me think about how much pain I am in. Just not a good idea. But I do do relaxation breathing. I close my eyes. I focus on my breathing. I even…