The Beauty Of My Fibromyalgia

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My husband came home from town and told me that he heard an update about a mutual friend; that she was at the end of her life.  She has ALS, (formerly called Lou Gehrig’s disease) a horrible, disease that affects thousands of people every year. I felt terrible for her and her family and know how hard that disease is for everybody.  I pictured her in her wheelchair with her beautifully spun white hair coiled behind her in an old-fashioned bun, the bun that my grandmother in her nineties used to wear every day; held together with old-fashioned black bobby pins. There was one difference, the woman in this story is not in her nineties, not even close, she is 43.

I have Fibromyalgia and Hashimoto’s Thyroiditis and before you write me letters about how pain is all equal and that pain is pain and we have our right to our pain I will tell you this: the stripping of your body, one by one and of all your faculties, is something I would not trade for and neither would you. The last vestige of communication this woman, this YOUNG woman had been struggling was to try to write something with her twisted hand on a computer generated machine. Fibromyalgia pain IS pain. I know I have pain, I understand it and I can communicate it, I can’t solve it. When there is nothing that helps me feel better, at least I can verbalize this, at least I can try to focus on a pretty picture of strong red berries on a simple branch. When I clutch the banister to be able to go up and down stairs, I am mostly doing it myself. If I can’t and need a hand, I will ask for it and accept it and will be able to have the dignity to say “Thank You.” I can ask my daughter about her day or my husband’s first day of work or my son’s admission to colleges. I am able to do that and am thankful for it.

My husband, the most patient man on earth, gets irritated and annoyed with me when he asks me questions about the type of pain I am in. He is direct, like a prosecutor: “is it muscular?” is it in your joints?”  “does it stab, burn, tingle, come in waves?”  “is it sharp, is it dull, does the pain move around?” I’ve always been vague in my answers about how I feel physically because I am the type of person who can’t verbalize my symptoms well. Fibromyalgia is defined as having pain all over and that is what I have. Is it muscular? Yes, Is it your joints? Yes, It is all over and hard to differentiate from one Doctor’s appointment to another, Yes. We also have Fibro Fog, our endearing term for forgetfulness, makes us forget how things were yesterday compared with today.

Fibromyalgia changes every day, sometimes every hour; there were times when I was sure I had a really bad virus but my Doctor just told me they are “flare-ups.” My mother was concerned because I was sick so often, I never knew I had flare-ups, I didn’t know what flare-ups were; no-one ever told me.

I am not saying that your pain or her pain or his pain is any less uncomfortable because it is not life threatening. Listen to me: I am saying that pain is pain, and that it can be unbearable and it does affect your emotions and social skills. But, at least it does not deprive me, me personally, of the ability to still connect with my loved ones and friends and I am able to communicate.

There is no competition. Pain is pain is pain. My friend who is dying from cancer is fighting every day as she has for five years before her breast cancer metastized into brain cancer. This is not a game where whose pain, whose life is worse. This is MY opinion, own it or reject as you please. I do have enough pain to consider myself suffering. I may not have control over my pain but at least I still have control of all my faculties.

We are all at risk for everything, like everyone else in the world. There is so much sadness: health, terrorism, wars, economy,  that sometimes I need to focus on just by breathing, in and out, in and out.  Sometimes I need to slap myself out of my self-pity and give thanks for the things I can do and more importantly send blessings to those who are less fortunate than I am. Now.

9 and A Half Minutes, Episode 2 (Interviews)

Image by Olivier Charavel via Flickr

I apologize. I’m supposed to talk about things that annoy me but I can’t today. That’s just way too mild for a topic that’s making me feel totally infuriated and incensed. I’m steaming. Literally. I feel smoke coming out of my hair follicles and anything near me could burst into uncontrollable flames.  I want to talk about a practice that I absolutely hate with a passion. Today I am talking about the job market and I’m NOT talking about President Obama or the economy. I’m talking about people. Specific people. You should know who you are but since you are so out of touch with reality, I’ll tell you.

I want to blast the inconsiderate Human Resource people or “People Person” as some call themselves now AND Hiring Managers that don’t take the time to give a candidate an answer, a final decision. I’m not talking about someone who has just sent in their resume, I’m talking about a candidate who has been in for an interview, not to mention four separate times for interviews. I’m talking about interviews leading up to talking to the CEO of the company and then…. hears nothing. NOTHING, bupkes, zip, nada. This is not only extremely rude and hurtful. It’s inhumane.

What happened to simple common courtesy? I was a Human Resources person way back when and not only did we acknowledge every resume that came in with a letter but we called each candidate that interviewed and gave them an answer. Did we enjoy turning people down? No. Was it a hard call to make? Yes. But, at least we gave the candidate the courtesy, they so rightly deserve, of a phone call to tell them the decision. If we couldn’t reach the person, we sent a letter, an authentic letter with the company’s letterhead and our signature; because people have the right to know, one way or the other.

Today? They don’t acknowledge you or reject you, they do absolutely nothing. Do these interviewers and hiring managers think that because the economy is so bad and that they have so many applicants it makes it okay to just let things slide. It is not okay, it is never okay; it is wrong. Gee, I guess after several months and no return phone calls you assume you didn’t get the job.  Don’t they know that it’s the waiting that is torturous?  In this scenario, “silence is not golden” silence stinks, it’s a cop-out, it’s cowardly. Tell me, just try to tell me that these hiring managers or employment representatives don’t have thirty seconds to either pick up the phone (what am I thinking?) or at the very least send an e-mail. An e-mail would give the candidates closure but no, job seekers don’t even get that. Why not? To me, it’s totally unacceptable and nobody can convince me that you can’t write an e-mail that says “thanks but no thanks, we selected someone with more appropriate experience and blah blah blah”. PEOPLE NEED CLOSURE so they can dust themselves off and try again. Apparently this is too much to ask for.

In my opinion, there are no excuses, it’s just plain rude and demeaning. What kind of world are we living in now? What have we become? Don’t give me the excuse about the volume of resumes either. I worked in HR for 25 years and we had resumes coming in by the hundreds. Sure, we were busy every minute but we made the time to call and let people know the hiring manager’s decision. People are stronger than you think, they just want to know, one way or the other.  So, turn on your computer, or ask your assistant to do it for you, write a courteous note, click send and give people their dignity back.  There are no excuses. Just do it. People are going through enough of a hard time trying to find a job. You are just being rude and inconsiderate. If I could, I would start a movement against this. That’s how mad I am. Very truly yours, “Norma Rae.”