20 October 2014

The Pirates of the Fibro Sea

If you have been following along on my Facebook page then you know that I have been in a great big old flare for a bit now, and this led me to ask myself what does Fibromyalgia look like for you? I have become so accustomed to the realities of living with this condition that I sometimes forget that those around me have no idea what I am going through.  

Many of you know that for the longest time I was losing weight and feeling great, getting stronger daily, but like anything else in life the moment of the turning of the wheel had to come for me so I crashed and hard, so I have been over here for about two months now flaring it up.  So what does fibro look for me? well the swelling has taken that weight loss and basically made it completely irrelevant because I suddenly appear about 8.5 months pregnant, with all the lovely things that come with that condition, minus of course the bundle of joy at the end of the suffering.  There is also the rash that has made itself a permanent fixture now on the side of my face and along my chest, the SLE trying to push it's way through, so far I think I am still winning that battle, will keep ya updated in future blogs!   oh and my feet! oh my they burn, so badly that keeps my mind off the aches and pains in my joints and my head that has joined in the swelling making it even painful to put on my glasses due to the pressure....and yet I am sitting here writing this, could it really be so bad you may ask.....I will tell you it is, it is horrible and YES I am here writing it, fighting back the nausea that has plagued me all day. 

Why? because it needs to be talked about, it needs to be discussed until everyone everywhere understands what this disease is, how it can instantly rob you of your freedom to enjoy your life, where you may have thought you had a choice fibro has suddenly taken it away, or at least tried to.  I am not such a good patient, just cannot sit still for long periods of time, so although I know I should be sleeping, getting lots of rest and avoiding any kind of issues or anything too taxing right now, ask me if I can do it? well hell no.....my idea of bed rest is getting up every hour or two if I can make it that long and then wander into the kitchen to start dinner, or sweep the house, laundry and yes there have been instances of walking barefoot in the rain, dancing has even been seen in the mists.......physically I might feel like utter crap but my mental, emotional and spiritual self is doing ok! more than ok in some ways.....making plans for Witch's Chamber, moving forward with new pieces and breaking new ground with new business connections, so many things to come......so as I sit here and of course my feet must remind me ever so painfully about the fact that the flare is still here, I continue to write, I continue to dream.   

I count myself as one of the lucky ones when it comes to fibro, only in the early days of my condition now almost 30 yrs ago, did I ever really experience the brain fogs as I called them then. People had no idea what I was talking about when I would try to explain to them that suddenly it was a moment of confusion, and I would search desperately for a voice or face that I knew; that I trusted, someone that was familiar....I remember those moments they were terrifying, they thankfully have not happened for a very long time, now it is more of a physical suffering for me, and that well that I can take.....my mind takes me to all the places I wish I could go to even when my body won't cooperate, dreams are easy though they don't require any more participation than your thoughts, wishes and sometimes the added energy of a very rambunctious 4 almost 5 year old captain and the seas are always available for us to sail our Pirate bed ooops sorry ship into the great beyond! 

This is what this disease does to me, this is what fibro looks like for me and how I cope.....what do you cope with? how do you deal with it? 


  1. The Fog is the worst of it right beside fatigue. I HAVE to work right now, so I conserve every bit I can so I will have it when I need it. When I'm with my grandkids it's earier to bear somehow, I think I let it go until I crash!!( not a pretty site!!) Yoga seems to help, but I can't find a class right now! Keep on fighting. I've only been diagnosed for 12 years and I still have to remind others of my now new limitations! I can't figure out how to sign, so I'll use anonymous Terri Pett Thompson

    1. I remember the fog so well, it was one of my first symptoms, thankfully not one I have very much of now....I do the same thing go and go until I just can't go anymore.....and the thing about saying no when I have had enough after almost 30 yrs they finally get it, so keep trying to get them to understand!

      sending strength. love and support your way!

  2. You already know most of my ailments. I was diagnosed with one more chronic illness just a few days ago. I guess I like them in numbers *sigh*. I cope with the pain with meditation, writing, storytelling, distraction exercises... and when all else fails, medication. But in the end, it always hurts again...