fms

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fibroFLUmyalgia… from bad to good

i am going out of my mind… it’s bad enough the weather is changing and every inch of my body seems to want to scream out in pain to let me know. it also seemed to be a good time to catch the flu. why not? why not get it all over with at the same time? i mean… let’s stop and pause for just a moment to think about why not:

  1. it’s not as if i haven’t missed enough time from work and
  2. it’s not as if laying in my bed 24 hours a day/ 7 days a week doesn’t thrill me to pieces and
  3. it’s not as if feeling like my head has been filled with cement is better than just the foggy feeling i usually have and
  4. it’s not as if my kids don’t love joining me in my bedroom for “mommy and me” time and
  5. it’s not as if that journey from my bed to the kitchen for my “once a day” trip out of bed doesn’t just make for a great “FIELD TRIP”! and
  6. it’s not as if the walls aren’t closing in on me in my bedroom and
  7. it’s not as if playing these same four facebook games don’t keep my interest, right? RIGHT?? and
  8. it’s not as if having the flu is really that bad… I mean it’s just aches and pains…

shit. it’s just aches and pains…. what the eff? if i thought my aches and pains were bad before… let’s just say TIMES TWO! i was not an 82-year old lady anymore, i was a 164-year old lady this week. a 164-year old lady that couldn’t sleep, had no appetite and was in excruciating pain. TIMES TWO.

this week, i was unable to walk the hall from the kitchen to my bedroom after dinner one night. it was a horrible experience. i was embarrassed. i was in shock really. it was as if i forgot how to walk. i could not lift my knees up to take a step so i just held on to my husband and literally scooted my way down the hallway in my slippers, one inch at a time. i had to stop three times to take a break it was so exhausting. meanwhile the tears are just rolling because i am in pain, i am frustrated, i am pissed off because i am once again put in this position of complete invalid. i feel the words at the tip of my tongue… “I AM PISSED OFF AND I CAN’T TAKE IT ANYMORE!!!!”, instead i just go lay down… take a few minutes to get it together and then call my son in to watch “grey’s anatomy” together and get my “mommy and me” time in. i cherish this time together like i cherish sleep.

this is when i realize… i am blessed. let me say that again. i. am. blessed. i have this beautiful child. my first-born. he is  a miracle child, he was almost lost to me during my pregnancy. he is a fighter, he has been since he was inside my belly. he had to fight to stay alive and he’s kept that attitude ever since. he’s an awesome kid. he’s graduating from high school this year and i must cherish every moment i have with him. so… screw this pain. don’t let this shit take away from my moments with him. i must remember this moment right now, this feeling i have right now. these are the moments to be cherished. you don’t get do-overs in life.

thank you for reading! time is so precious and i appreciate that you take the time to help me as i work through my experiences through my blog. this has helped me tremendously get through the days and nights.

stay cool!

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i have faith. i will overcome this disability!

I am disabled.

Wow.

I am a proud owner of a handicap placard.

Woot! Woot!

Is that how I am supposed to feel?

Yeah! I get preferred parking now when I go shopping! Hell yeah!

Let me tell you how it really goes down…

In the morning when I get up

this is how i feel…..

i wake up and

i feel tired and

in pain and

i slowly get out of bed after about 30 minutes (if i’m lucky) and

i get my laptop so i can work and

i sit down on my bed and

i start my work day and

my beautiful husband brings me coffee and toast and

i take my medication and

i drink my coffee and

i eat my toast and

by noon i am exhausted. i am already exhausted!!!

my brain can hardly focus and

i’m pretty damn frustrated because i know that it wasn’t that long ago that i was damn good at my job and seriously?

this fibro fog sucks!

i attempt to eat lunch, which these days ends up being my one real meal of the day after my toast and

then i attempt to work again and

i end up playing facebook games and

twittering and

now it’s dinner time and

i sit with the family and

i’m not hungry so we talk about our day and

after i go back to bed and

i attempt one more time to work and

again fibro fog and

again facebook games and

again twitter and

now it’s time for my night time meds and

i can’t sleep so i write my blog and

at the end of the day

this is

what i know for sure

regardless of anything else

i am blessed. i. am. blessed.

i am alive and

for today, i am able to work and

i have my family and friends to support me and

who believe in me and

i have faith.

i have faith that i will get better.

i will make myself a better person and

i will do my physical therapy and

i will eat healthy food and

i will educate people on fibromyalgia and

i will take my medication and

i will overcome this disability!

what else do i know?

if i can do this?

anyone can!

having the preferred parking ain’t what it’s cracked up to be… i’d rather walk the extra distance.

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Yo-ga! Yo-ga! Yo-ga!

Fibromyalgia is a real downer… there’s no doubt there are a lot of things about this condition that can bring a person down. I experience them on a regular basis, and on most occasions, for me, the worst of it hits on the week-end for some crazy reason.

I can be “Debbie Downer” with the best of them, but I created my Twitter account and this blog to try and bring myself up (and those who I hope read this). I want to share my experience and hopefully give folks ideas on how to improve and live better lives. Selfishly, I hope folks give me ideas back so I can continue to learn. This week I thought I’d talk about my experience with yoga.

After dragging my feet for years, Restorative Yoga is really the getting me out of the house. I have been a hermit for months and finally my girlfriends convinced me to try yoga. Restorative Yoga, or I believe it is also referred to as Yin, is extremely gentle. I haven’t been able to get out of bed for months. This Yoga class has 15 minutes of gentle yoga to warm up… I’ll be honest, I generally only do about 50% of this as I can’t handle all of it, but I either modify or just relax during this part. This warm up part is where you do a lot of stretching exercises. I can’t bend over while standing so you can just forget that stuff!

The restorative part is where I am diggin’ this yoga stuff. Lights out, candles lit, soft relaxing music… all of these poses are done on the floor… EXTREMELY gentle. Each pose is held for 5 minutes. This is very relaxing…

I get two mats for the poses where you are on your knees, otherwise I am in pain. For the second mat, I fold it over twice and put it on top of the first mat so I have triple padding. It’s perfect!

I am a pretty anxious person… the first time I went I wasn’t quite sure about the class…. the second time I was starting to like it… now I love it! I look forward to it!! Honestly, this is ME time. Time to just relax and clear my mind for an hour. I don’t have to think about my pain, work, stress, or what words I need to use to finish my sentence! I can finally shut my foggy brain OFF! Woohoo!!

My girlfriends are the best, they go with me… grab your friends and go. I hope you find it as restorative as I do!

What do you do that takes your mind completely off your pain??

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The F word… Fibromyalgia

I have learned so much in the last 18 months. Things I could have gone a lifetime without learning… and quite frankly been okay. In the last 5 years I have been to the doctor off and on so many times I have lost count. I have felt stupid, crazy, frustrated… but for all of you out there who have gone through this experience, I don’t have to tell you. You already know. You have the F word too… FIBROMYALGIA.

Once you are diagnosed with the F word, you may feel like you are getting closure but it’s really only the beginning of your next F phase… FRUSTRATION. You thought you were getting out of that phase… but NO! At least not me. This, I have found out, is a medical condition that has no cure, no visible signs that you are not well and has not been 100% accepted by the medical field. WONDERFUL. “Welcome to the the F world people, hang on to your seats, this is going to be a rough ride!”

Whenever I see people who know I am not feeling well, I feel like I should look like shit so people will accept that I feel like shit. I should paint all of the places on my body that hurt a bright pink so that it will be obvious. Instead, my lucky ass, gets to be the one who can no longer finish the simplest sentences or remember what I was doing 5 minutes ago or even 5 seconds ago. Noone gets that brain fog has anything to do with the F word, people just think I’m stressed out, exhausted or just stupid. My foggy brain is a world I seem to live in 99% of my life these days… I can remember when I was smart. I can remember the days when I could actually train a room full of adults. Today, I’d have to play charades just to get through my first sentence presenting to a room full of first graders! So now you know my 3rd F word for today… FOGGY.

What I really hate? All the support groups that I went to online thinking there would be good ideas to help me feel better. What I found were too many online support groups with a bunch of sad people talking about how miserable they are…  in the end I got horribly depressed. Not to mention all those F’ING (my 4th F word for today) QUACKS trying to sell the miracle drugs that will cure us in 6 weeks or less!  Seriously… I’m in pain and in a brain fog… I AM NOT COMPLETELY STUPID!! These people have got to be stopped. I mean seriously… put the money towards research..

So what am I telling all this for? After taking 5 years to get diagnosed… 18 months after being diagnosed to finally get into a treatment program… that is 6 1/2 years of my life. That’s pure craziness! I am ready to take control and help others as well. Blogging seems to be the thing these days. I just wanted a place for me to share my journey with this crazy thing called Fibromyalgia.

This is my first blog and I hope it helps others. I am here to learn, share and network. I hope you share with me as well…

Thank you for reading!