Once a week I travel to a prison and sing in a choir made up of half “insiders” and half “outsiders.” We practice songs, blending our voices together, sitting in the gymnasium. Seeing people who are imprisoned, sometimes for the rest of their lives, seeing them come and let their guard down a bit, be part of this communial experience is one of the most moving things I have experienced thus far in my life. People that can choose not to try anymore, to no longer try to be “good” come and create and share is profound and painful. Each week is different; joyous, fun, and heart breaking.
I am exhausted in all the ways I can think of; physically, mentally, emotionally, and the other “llys'” The wonderful thing in my life I am preparing for, a trip to the UK to spend three weeks with my boyfriend, is wonderful! It’s amazing to me that I will be boarding a plane in less than one week and flying over land and water until I end up in a place where they speak differently and drive on the other side of the road! I feel incredibly fortunate to have both my sweet, loving boyfriend and to be travelling to England.
All well and good, right? Not so fast. I’ll remind you, I have Fibromyalgia. It makes “normal” things exhausting and exhausting things totally overwhelming. I have spent at least three hours in the past two days on the phone or connected to the phone, trying to get enough of my medications to last me for the three weeks I’ll be gone. I am so exhausted from this time on the phone with insurance company, pharmacy, doctor office, AND the fact that I am STILL not sure I will get my medications in time. It’s highly likely to work out, as things tend to work out, I’ve learned, but it is so stressful!
I’m in a ton of pain, nauseous, headache, a bit dizzy, hot and cold, and probably some other things if I think about it for a moment. No, I don’t have the flu or a cold. No, it won’t help to go to the doctor or take Vitamin C because these symptoms are part of “normal existence” when you have Fibro. It is also highly likely that I will go into a flare before I leave or once I get to England. A flare can keep me down for weeks. These are the things that make Fibromyalgia such a bitch to deal with. It’s not just the pain or the exhaustion, it’s the way those things conspire to make my life so much smaller than it once was. I simply don’t have the energy for more. Fibro be Damned!
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.
July 18th, 2012 Somewhere around 3 p.m. Iowa City, Iowa (originally written on REAL PAPER) 😉
The neighborhood I reside in has lost power. It’s been at least 30 minutes since everything went off and I’m already feeling grateful, after some initial feelings of fear and worry. This is Recovery Stuff. Before Al-Anon I could easily be stuck in fear for hours into days, only focusing on what might go wrong.
Instead I am feeling grateful for the fact that power is “magically” delivered to me the majority of the time. Grateful for the pureness of silence without electricity. No buzzing, humming, noise of the television or radio. What I hear instead is the sound of my pen across the paper, the occasional sound of the house settling, birds outside, cars going by…
Am I nervous, worried, scared somewhat? Yes, but while holding viable options in my head: go for a drive, go to a friends’ place, the library…Am I worried about my health and the lack of power? Yes. I’m concerned about being too hot and that contributing to the nausea, headache, and painful body I am already experiencing. The pain which is fibromyalgia, seeming to come from any and all parts of the inner and outer body: muscle, fat, blood, air, cartilage, bones…
All the while I am reminded of how fortunate I am to have shelter, window air conditioning, refrigerator and freezer, toilet, shower, sink, a big bed. Could I deal with this if I was homeless? If I was working outdoors? Walking back from the food bank with bags of food?
And the gratitude goes further, deeper with the realization that I am able to see and feel my gratitude and realize my good fortune and connectedness with the world.