Friday, August 8, 2014


Sometimes, I feel as if I'm stuck inside an isolation tent.  Or, like I'm the boy girl in the bubble.  This illness is relentless and controlling, but more than the illness itself, we have to look at society.  At the "normals".  They just can't wrap their heads around what having Fibromyalgia really means.  Therefore they either unknowingly isolate us or force us to isolate ourselves.  

It truly is a double edged sword.  Most A lot of the time, we really can't force ourselves out of the bed house due to the pain and fatigue that engulfs us to our core, but on the days that we can we sometimes don't because either we don't have anyone to do anything with (since they've all strayed away from us from the times we've had to break plans or decline invites) or because the one's we have left in our lives exclude us because they think we can't handle whatever plans they've made.  A prime example of the latter, is a friend that's going camping in a newer cushy camper with soft beds and A/C.  An invite doesn't come your way then the friend says something about having not invited you because they didn't think you'd be able to tolerate camping.  Well, maybe we couldn't on that day.  But an invite and allowing the Fibromite to decide themselves whether or not they could handle it would be nice.  

You know, I'm down to only a couple IRL friends.  This illness has stolen them all from me.  The few I have left just doesn't "get it".  They have no idea the pain I truly feel on a daily basis.  The fatigue.  I put on the best show I can when I'm around them.  One time this past winter, I was plagued out of the blue (when isn't it out of the blue with Fibro?!) with sudden charley horses in my toes, back, and lower abdomen all at the same time when we were hanging out.  I had to jump up stand up as quickly as I could and I was wincing and sucking in my breath trying to stretch the cramps out.  My friend looked absolutely aghast and said "Are you ok?"  I grimmiced smiled and said "I'm really sorry.  Today is a really bad pain day".  She looked at me and said "I've never seen you like this before".  I replied with "Yeah, because I hate people to feel sorry for me so I do my best to fake a smile and push through the pain so that no ones knows how truly awful this is.  No one understands what this is like".  Within a few minutes,she wanted me to walk down the stairs to the basement and it was like that for the rest of the night.  Even after seeing and hearing, she still didn't "get it".  

Finally, there's the worry and the guilt factor if we do accept an invitation.  What if we can't keep up with the others on whatever outing we may be on?  What if we hold our friends back, or slow them down.  That's always a worry for me.  When it happens, and believe me it has, then the guilt sets in that we ruin everything for everyone around us.  

All of this combined, leaves me sitting at home almost every single day staring at the four walls.  Feeling as if they're going to close in and suffocate me.  Sometimes I feel as if I'm going to breathe in all of the oxygen that's in this house until I'm breathing heavy, hot, unoxygenated air.  Feeling so bored and lonely that the thought of passing away in my sleep is a welcomed idea for a brief stint of thought.  

There are so many ramifications to living with Fibromyalgia that normals would never even begin to think of.  Besides having a bajillion co-conditons, medication side effects, feelings of no self-worth and depression, you also have the isolation.  Sometimes, I wish that everyone with Fibro could be banished to a deserted island., because then at least we'd all have each other in one spot, IRL, to understand and communicate with.  Seeing as that will never happen, we'll have to just visualize that this little blog is the island, and we'll all have to connect here with one another.  How I wish though, that I could see all of your faces.  Hear your voices.  Hang out with each one of you, and give each and every one of you a gentle, butterfly hug.  If you're feeling isolated too, please know that you're not.  We're not.  We all have a little piece of each other.  I love you all!


  1. Great blog (and Facebook page ) fibro ( and chronic fatigue ) really is so isolating, I've ended up vitamin defficient too due to lack of natural sunlight,I could never have imagined my life the way it is now, I believe the fibro community is such a strong one because we all realise the strength it takes to battle fibromyalgia each and every day

  2. Amy that was a beautiful description, in this case beautiful meaning perfect and clear. Thank you for sharing that, I often think I am making a big deal about my problem. I still can get out and around on meds. I can still force myself most days. I know it shows though. I also pretend Im better than I am. I am also ISOLATED...I used to think it was the depression or laziness. But no, I know its the discomfort I suffer when I walk longer than a block, or stand longer than a minute....this is my FIRST DAY BLOGGING. im kind of nervous about what may or might not lay ahead for me. Time will tell I guess. I don't get invited to fun things. Im 51 but feel like 81 socially. My kids don't get it either. They do try. I wish I was on disability, I have no income at all. but somehow I don't think I deserve disability....my Dr's have NOT diagnosed me with a title...after a year.....luckily I don't have rent or mortgage due. But I don't have any dollars coming in, just donations and free food...thank God.........God Bless You

  3. P.S. I will check back here to see if anyone writes me......I just started blogging today and your site is my very first site.....thank you

  4. hi does anyone comment on new postings by new members here?....or am I not looking it up correctly?....how can I get more involved .....thanks