This post is for those that have fibromyalgia, those that are a caregiver for someone with fibromyalgia, and those that simply want to understand fibro a bit better. First, I want to thank everyone for giving me positive feedback about the CinderellasGlassPR.com fibro article. The celebrity version of “Fibro Says” is on hold until I get up the courage to approach people in the industry with my cause. I know someone needs to, but who says that “someone” is me? Then again, if I do not – Who will? I am not sure, but I am humbled by the Twitter responses.
Speaking of “Fibro Says,” I want to hear from EVERYONE, whether you are are living with the illness or not. So much has been said on Twitter about my post, but please feel free to leave your comments on THIS post, or my earlier post. I do ask that the comments stay nice. You are free to tell your side, ask questions etc. Fibro is not always “positive,” but I will take civil. I do not see the need to make people feel worse.
Now, on with “Fibromyalgia Week Roundup.” This was another interesting week for myself surrounding fibromyalgia. I had my monthly doctor appointments with my pain management / fibromyalgia doctor. Next, I saw my therapist. Yes, I admit that I am in therapy. Why not? So many fibromyalgia sufferers also face depression. Depression goes hand in hand with fibromyalgia because your brain changes when you get fibromyalgia. Okay, that is not a scientific explanation, but I hope it makes sense.
Since I am not a doctor, please read about fibromyalgia and depression here on WebMD.com In other news, “Prince Husband” has given me the flu. Therefore, I may not make sense in general, and my editor went to work for my former partner. I think I just crossed the “TMI” or “Too Much Information” barrier. That is actually a “me” problem. I do not think I can blame “TMI” on fibro, I say jokingly. Okay, enough about that- Here is what I learned this week…
According to my fibro doctor (let’s call him “Dr. S”) fibromyalgia and depression are two illnesses that you feel as though you need to explain (as a sufferer) every time that you enter a room. Seriously, fibro sufferers are always trying to convince people that we have the illness. Dr. S went on to state that if one had diabetes, one would not have to go in to further details. People would just accept the fact that you REALLY have diabetes, Right? However, when it comes to fibro, others look at you, and they often see “well.” They do not believe.
Now, why do fibro sufferers feel the need to be validated? It is not for people to pay attention to us, or for pity. At least not in my case. I mainly want to educate others that fibro exists. In addition to the education factor, I personally always need to explain what I go through to my father. This is what occurs weekly in my life.
I literally had an hour conversation with my father. I had to re-explain fibromyalgia all over again to him. In his case, I think the break down in communication occurs because he does not want me to be sick. Next, he also feels as though he has been understanding, and helpful enough. He is “over it,” but I am not over fibromyalgia. Does that make sense? He HAS taken me to doctor appointments, and sat in the emergency room with me in the past To that I tell him, “thank you.”
My dad wants me to quit writing, and get a “real job.” To that I say, I can write around my “body’s schedule,” I love to write, and I would get fired from any other job on day 2. I would be late, and unreliable. Not on purpose, but it is just my body’s life, and I am living it. In these conversations I really feel like it is “Groundhog’s Day.” I re-live these fibro conversations over, and over again.
Now, I am just a “daddy’s girl” who wishes “daddy” would understand (awe). On the flip side, why do I have to make him understand OVER AND OVER again? My efforts are not in vain if I can educate not only my dad, but anyone. The average person in the “general public” has never heard of fibromyalgia (outside of the Lyrica commercials). Even though, 3-6 million people in the US have this REAL illness (according to the May Clinic website).
Okay, so we went over my ”daddy / fibromyalgia issues,” and one wonders why I have therapy? I am half-joking. On a positive note, DR. S is setting me up with a local radio station, and may find other outlets for my writing. That is so important. For fibro sufferers it is important to nurture those sides of us that existed before the illness entered our lives. This illness will swallow you / us. Dr S WANTS me to write. He does not want fibro sufferers to get stuck napping on the sofa for a lifetime. Napping on the sofa is easy to do. It is natural for a fibro suffer to want to sleep, but that is giving up your life to the illness.
In addition, this week I saw what my future could look like if I do not fight. I saw a poor fibromyalgia patient in my doctor’s office this week. She was in her late forties (that is still young), and her adult daughter is her caregiver. We chatted in the waiting room, and my heart went out to her. She is on oxygen all day, and in a wheelchair. I am not stating that all fibro sufferers will face this patient’s fate. I also do not know what else happened in this lady’s life to lead her to the wheelchair. I just know that if I can help it at all, I do not want to be in that wheelchair. I want to keep fighting this illness in MY body, and keep fighting for a CURE!
I am going to wrap up in a moment. I am sure that I am forgetting half of my week to review. Plus, I do not want to bore you. I would really like to hear from you. Half of the battle is to reach out to others. As “Prince Husband” says, fibromyalgia support groups are great, but they are few and far between. Not only that, a “fibromyalgia support group is a group without any members. ” Why is that? Everyone is too sick to show up. He is right, and that is why I open up this site to EVERYONE who can comment in a constructive way! Let’s help each other.
I appreciate all of you that support my cause, and I wish all of you well that have fibromyalgia. Let’s keep spreading the word, and supporting each other. Sure, I write about myself. Mine is the story I know best. I also, truly write to change the conversation about this illness. Fibromyalgia is real, it needs a cure. Let’s go! Side note: I AM LOOKING FOR GUEST BLOGGERS. YOU MAY WRITE ABOUT REALITY TV, FASHION, FIBROMYALGIA, OR…. PLEASE CONTACT ME FROM THE HOME PAGE LINK (IN THE HEADER). THANK YOU!!