Tag Archives: chronic pain

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!

Bipolar, chronic pain, emotional intensity, exhaustion

I haven’t been online much today because I woke up with my back “out.”  When I say “out” it usually refers to low back pain that makes it difficult to walk, sit, or lay comfortably.  My back hadn’t been this severely painful for quite awhile and it scared me.  When it gets this bad, the cruelly misleading voice in my head begins reminding me of when my back was so bad that I could not work, and participated in months of physical rehabilitation, after a car accident.  The cruel voice whispers memories of that time in my life where most if my time was spent in rehab and not knowing how I was going to survive.  It was a scary, painful time in my life and when my pain is so severe I become frightened that “it’s happening again.”. That today’s back pain is a signal of worse things to come and I become irrational and frightened.

Everyday I live with pain, it clings to me, I feel I have the flu all the time.  This is pretty common for people with Fibromyalgia and we all learn to deal with it in different ways.  The daily flu-like feeling puts a fog over my thoughts and utter exhaustion over my body and soul.  I am a warrior and deal with this everyday, as do millions of other people.  This makes life itself overwhelming, before you even throw in medical appointments, figuring out how to survive when you feel ill everyday.

I also live with incredibly quick changing moods and emotions.  I can go from feeling pretty content and pleased to feeling hopeless and suicidal within an afternoon.  This has been diagnosed as bipolar and also as emotional intensity disorder.  Whatever you call it, it too is utterly exhausting.  I am not a “slave” to my emotions, as some might judge.  I have developed so many tools over my 40 years of life and use them liberally.  But no wonder I am consistently exhausted.  These struggles are ones that are rarely quick fixes and they are oppressive.  There is little time or room to have a breather, and damnit, I am exhausted. 
Continue reading Bipolar, chronic pain, emotional intensity, exhaustion

ARGH Fibromyalgia, you thief!

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!