Tag Archives: hope

Who’s Been Reading Lately?

“When it’s over, I want to say: all my life I was a bride married to amazement. I was the bridegroom, taking the world into my arms.” -Mary Oliver-Image


I want to know, does anyone read books about Fibromyalgia? Anyone that is, who has Fibro. For me, Fibromyalgia has come with exhaustion, pain, brain fog, and many other symptoms that contribute to making it hard for me to pay attention. I also have a diagnosis of ADD, which I suppose doesn’t count as a plus for me in the paying attention side! I swear I have good intentions when I get one of these books, I do! But in the drama of living everyday with all this pain, things get put aside and forgotten about, things like books. I actually miss reading and used to be quite a voracious reader. I’ve found this to be quite common in other folks who have Fibromyalgia, that they used to read alot or otherwise engage in “scholarly practices,” but they now find it quite difficult to keep up.

I started this post in a somewhat cheery frame of mind and would like to keep it that way. So instead of bitching about the worries and pains I have, I’m going to talk about the books. Books, books, books! To those of you who ARE able to read and take in this information from the printed or Kindled word, do you have any tips? I have numerous books about Fibromyalgia as well as ADD; Fibromyalgia for Dummies, Driven to Distraction, etc…I tend to get into the books for a decent size chunk, when I get lucky, and then put them aside, effectively, NEVER to be read again. It’s a damn shame, a damn shame I tell you! This great, potentionally helpful information all around me, and me unable to partake of it.

In my imagination, I see readings in public places, of such books, where those of us who want to learn, can come and listen, and those who are able can speak, read the books out loud. It could become a “community” thing for folks who might not otherwise have a “community.” (By community, I mean a group or number of people who you feel are close friends, family, like family; something that helps you feel a part of the world.)

It’s all good to have ideas of public readings, but who is gonna do it? I have ideas for days but little energy. I suppose this could come back to community and whether I am a part of one. I could share my ideas within this community and there might be people out there without ideas who DO have the energy and desire to do them. So it’s another exercise in reaching out and opening up to others. To having faith in humanity and our potential for good things, our shared love for one another, our hope. Our actions.

Married to amazement.  I can’t think of anything better to be!

Some Words About Things

Wow. There sure is alot going on right now. I am deeply saddened about the run up for conflict that looks to be happening in Libya. More destruction and death. For What?

Blog posts have been floating around inside me for weeks upon weeks but the drag of everyday life, pain, exhaustion, joy, and fun along with self-doubt have kept them locked up. I wish to release them, beginning this night, September 14, 2012. May this be the beginning of many more sharings and openings.

I have found my tribe, as it were, in a Fibromyalgia Support Forum on Facebook. Amazing, though maybe not so amazing, considering the amazing friendships and love relationships I’ve had over the years with folks online. I’ve been a part of the group for at least a year, but just within the past couple months have I felt myself really “click in,” so to speak. I feel a part of this community. I feel safe there. I feel loved and appreciated. I feel understood. I feel proud to be a survivor. Proud to be able to help my fellow humans who also struggle with physical, emotional, and all sorts of situations. I think this began a lickle’ while back, when I got very depressed during an ongoing stomach flu type thing. During that time I got very low. I shared with my friends and acquaintances in the group what I was feeling and going through and shortly after got offline and didn’t return for at least a week. At some point near the end of the week, I got word that a couple of my in person friends were getting messages from people within the Fibromyalgia Forum, asking after me, expressing concern, worried that I may be in the hospital or worse.

Right then I was touched. Moved to see that these friends and acquaintances from all over the country and the world, all contained within my internet connection, had contacted my Iowa friends, requesting that -they- check on me. When I got back online, I had more messages of concern and love than I can count. I cried seeing the first page of messages scroll into the next. Suddenly these people were so real and such a part of my life. I thanked them as well as I could.

Since this time, I have become a different piece, a different person in the group, yet the same. Suddenly I am investing more time, energy, and love into reading my peers’ posts and stories, their fears and joys, requests for positive thoughts, pictures of children and grandchildren. Something that has been pretty damped down for quite awhile began to strengthen again. My desire and ability to help, what I went to college for, what I worked full-time doing, has strengthened again. When I reach out to my fellow group members in their times of joy and pain, when I send them a virtual hug, cheer, or eyebrow waggle, when I simply say “I hear you. You are not alone. You are not bad.” I am now saying these things to myself each time I share with another.

This disease of Fibromyalgia can be very isolating. Combined with depression and anxiety I already was working with, which can also be isolating. It is hard to remember you are valued, important, …. when you are sick day after day after day after day. (I write this from my point of view only. Others may experience it differently.) There is a shrinking of social activities. Often a shrinking of friends and family, for many reasons. And the reduction in my independence and self-sufficiency is very tough to accept. I am finding one of my central challenges is ACCEPTANCE. To accept what IS, rather than constantly trying to change it, pretend it away, blow over it. To just sit with what is, is one of the most difficult things I’ve done.

And I believe this is a struggle for many people. To really see what is, to acknowledge reality, acknowledge things that make us uncomfortable, sad, angry, disgusted, confused, vulnerable… Well that’s scary stuff! It’s some of the good stuff, being able to be with and feel your feelings. And reminding yourself it is all ok. I may not like all the ways I am thinking or feeling or behaving, but the point is to look at them clearly and just be.

I remain forever grateful for this thing we call the internet. When I began my journey here, it was in a Western Michigan University computer room, connecting to Isca BBS in Iowa City, Iowa. Isca is old school, babies! It had a purity to it somehow.

That was at least *counting* 15 (?) years ago and still I am able to connect, intimately with people that strengthen me, that love me, that appreciate my being. And we all need that, yes indeed.

Much love.