Choice Words

deckchairs-355596_1280On the last page of InStyle magazine, there is a brief article called, “I am That Girl.” Each month a different female celebrity is interviewed. In the August 2016 InStyle, the actor, Tracee Ellis Ross was interviewed. Tracee is an “outspoken” feminist, according to the article, but I found such a connection to the words she spoke that I had to share.

When asked, “What do you do when you lose hope?” (about the lack of progress of feminism) she replied, “I ask myself, ‘How do I take my frustration and translate it into something that actually helps the situation?'” Wow! Why can’t those words be used for any situation that causes frustration? Like chronic pain or illness? For example, when I get frustrated I could share with my blog readers or I could journal or talk to an empathetic friend. When I was a kid, my mother would tell my sisters and I to “go suffer in silence” when we weren’t feeling well. But by sharing my pain, discomfort or frustration with others I am able to let others know that they are not alone in their suffering and reminds me that I have wonderful readers who understand what I’m feeling.

The interviewer asked Tracee “What do you wish you knew when you were younger?” She answered, “That I was enough. . .I used to think there is a right way to look, there is a right person to become-then I got stuck.” How many of us face feelings of being “stuck?” Life didn’t turn out the way we thought it would. It’s easy to see ourselves as less than whole because of our physical limitations. Yet each of us is enough; we are whole individuals with likes, dislikes, intelligence, beliefs and ideas. Neither pain nor illness defines who we are.

Then there was the question, “How do you deal when you don’t feel 100 percent? Tracee answered, “I accept it. Acceptance does not mean you like it. It means that you agree this is what it is. Once you have that, you can step forward.” This response was related to not feeling like she is “enough,” but it is also a great response to not feeling physically well.  We can take a moment to accept that we are having a bad day, week or month and even accept our feelings about how bad our pain and/or illness is. Then we can move forward. As I am reducing the Lyrica (see Still here. . .), I’ve had quite a few rough days and I’ve been practicing acceptance to get through those days. I first acknowledge that I feel remarkably awful, accept that I won’t be able to workout that day, then move forward towards what I can do. Maybe a little yoga? Maybe making a piece of jewelry? Maybe just some coloring. . .

That’s all for today! I just had to share my thoughts on this article. All the best to each and every one of you.

Deb

I’m Not Feeling Very Well

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The other day a neighbor said to me, “I haven’t seen you for a while.” (translated for your convenience: “You didn’t go to our coloring get-together this week”) I told her that I haven’t been feeling very well. Her reply was, “Well don’t forget we’re meeting on Sunday afternoons too.”

Now it’s Sunday afternoon at 3 pm. I live right next to the lobby where we have a large table and chairs as well as big, comfy armchairs so we can meet to chat or to have parties or have, for example, coloring group.  I can hear everyone talking and laughing while they’re coloring. I’m at home feeling teary.

There are a couple of reasons I’m feeling so teary: I am in so much pain I can barely stand it and because my neighbor did not appear to understand why I couldn’t go today.

Yes! I am having a bit of a pity party! I haven’t had a flare this bad for several years. I’m used to having pain every day of my life, but today I couldn’t even get myself out of bed until 1:30 pm. I’m hunched over, stiff and heaven help me if I sneeze or yawn. I feel like a big lump of whiny!

The second reason I’m upset (and the point of this post) is that my neighbor seemed to not understand that I’m REALLY not feeling well. She has chronic Epstein-Barr virus and she and I have talked several times about flares, pain and terrible, terrible fatigue.

Was it my fault she didn’t understand? I did say, “I’m not feeling very well.” when maybe I should have been more forthright, “I’m having a terrible flare and I feel like crap. I hardly had the energy to get my clothes on today.”

It’s interesting that this topic should bite me in the butt considering what I wrote about in my last post (I’m Fine, Thanks.) For sure I don’t want the entire building to know that I’m hunch backed, barely able to walk and scared to death to get into the shower until my caregiver is here tomorrow. However, I realized today that I need to trust some of my friends and neighbors more. Fibro, CFS, and traumatic brain injury are a fact of my life and a part of who I am. When necessary, I have to be truthful about why I can’t leave my apartment.

Almost immediately after I posted “I’m Fine, Thanks” I got the most wonderful comment Two Thoughts on “I’m Fine, Thanks.”  It was written by the blogger of  Outbursts of a Spoonie. She is right on point. Now I’ve just got to work on being as  brave and truthful as she’s trying to be. We all are certainly works in progress, aren’t we?!

Deb

PS: How do you handle telling others how you feel? Is it something you also struggle with? Share your thoughts with us. We’d love to hear from you!

I’m Fine, Thanks

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This morning while I was doing my volunteer work for Meals on Wheels, the manager asked a gentleman how he was doing. His reply was, of course, “I’m good.” A co-worker and I teased him about the flat look he had when he said that. He grinned and said, “We all lie when people ask how we are. None of us says, ‘Oh it hurts here and here.'” I thought, “Boy is that true!”

I live in a three story apartment building that is for 55 years and older. I have many friends and acquaintances here so I’m asked how I’m doing whenever I come out of my apartment. I smile and say, “I’m fine thanks. How are you?” I’m not about to say, “Oh my God! I am having the worst flare of Fibromyalgia and CFS! My throat is so sore and my legs hurt so bad. The muscles in my eyes even hurt.” Yet that is how I really feel today.

People who know me well enough to know I have numerous illnesses, will come up with concerned faces and hushed voices to ask, “How are you doing today?” I can’t even bring myself to say the truth to them. It just seems boring and self-centered. I only have three friends with whom I feel I can be truthful and two of them are also chronically ill.

I think that these days, “How are you doing?” is for the most part meaningless; it is just a long form of, “Hello.” Yet we sometimes do need to talk about how we really are. For me it’s close friends, journaling, blogging and social media that provides a safe, comforting way to share without being seen as whiny or boring.

Deb

PS. Who or what is your way of sharing how you are really feeling? Please leave a comment. Other readers and I would really like to know how you share your pain and illnesses!