This is ME ! Fibromyalgia / ME / CFS Awareness Day 2014

Fibromyalgia Awareness Day is May 12! Louise from The Get Up ‘n’ Go Guru is starting a blog-chain where people living with one of these conditions can share their story. This is a way for others to find out new things about us as well as how it is to live with our condition. This is a way to spread awareness about fibromyalgia – the whole point of the day, right?

May 12 is Fibromyalgia Awareness Day

Here are Louise’s questions with my answers.

What is your name and how long have you had fibromyalgia?

I’m Brandi and I’ve had fibromyalgia for seven years now, but wasn’t diagnosed until one year ago (the preceding six years of diagnosis were very scary years).

Where do you live?

I live in the Mid-Atlantic region of the United States, and originally lived in South Carolina before joining the military in 1999.

Tell us five things about you that the people in your life probably don’t know (non-illness-related):

  1. I really, really want to go on a road trip across the states to visit each of the friends I still keep in contact with from the military.
  2. I want my Mother’s Day gift every year to be the same thing – a room at the local Holiday Inn by myself without a phone or computer! Just a book and the tv and silence!! (I’ve never had this gift, and have never asked for it.)
  3. I spend more time reading my bible and daily devotionals than I am seen doing it. I don’t try to hide it. I do it when the family is still sleeping (think silence).
  4. How much time, effort, energy, passion, and emotion I actually put into my blog.
  5. I’m already planning for my ten year vow renewal that takes place in Spring 2016.

Tell us five things about you that the people in your life probably don’t know about your life with fibromyalgia.

  1. I am in pain. every. single. day. without fail. No matter how much I’m smiling, laughing, or cutting up jokes, I’m in pain. I’m falling apart on in the inside, and it hurts to keep that front constantly.
  2. My stomach is always in knots, and hurting. I know it’s from the stress of being sick, so there’s nothing I can really do about it.
  3. My anxiety heightens when I know I have to leave my house or be too far from it. Being in large crowds or on the road also makes my anxiety worse.
  4. I suffer from depression during the winter.
  5. I get angry with my body a few times a week for being ‘weak’ and ‘sick’ all the time. I hate feeling helpless and vulnerable.

What is one thing you want people to know about living with fibromyalgia?

Living with fibromyalgia is a constant struggle, a war on the body. It has many symptoms, and simply taking a pill cannot solve our condition. Fibromyalgia makes us feel vulnerable and alone.

What is the most frustrating aspect for you living with fibromyalgia?

I become frustrated on the days my conditions are flaring (worse than usual) because I cannot do what I planned or wanted to do. On those days I think about the days I lived pain free. It makes me so angry that I haven’t had a pain free day since Spring 2005. Yes, I can remember the exact season of the exact year. Like all flare ups, the pain subsides taking the frustration with it. I now realize there are good days as there are bad days, and I’m okay with that.

Anything else you’d like to say before finishing?

Whether you know someone with fibromyalgia or another chronic condition, don’t be judgmental or impatient with them. Always speak kind words with them because just getting out of bed each morning is a challenge. No matter what we look like on the outside, our body is raging war on the inside. One kind word, sincere gesture, or understanding smile can mean so much more than words can ever express to us. Click here to read my story.

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Read other people’s answers to these questions!

Brandi

I’m Brandi, follower of Christ, wife to an amazing, supportive husband, blessed mother to four sweet children, and a fellow spoonie.
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