The Focus On You

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Tag: fibromyalgia (page 1 of 4)

What Fibromyalgia Means To Me

Originally published May 12, 2015

May 12th is National Fibromyalgia Awareness Day. Fibromyalgia was suddenly introduced into my life in 2011 after my grandfather’s death. Within 2 weeks of my 1st symptoms I was crying at the ER not understanding why my body was so weak. I begged for an IV full of miracles to pull me out of the fatigue.

As I was researching for treatments those first few months I came across a story that spoke to me. Christine Miserandino wrote a true story about how she explained lupus to a close friend. The title of the story was “The Spoon Theory.” She beautifully details how people with chronic pain have a limited amount of energy each day. Healthy people and chronic pain sufferers wake up with 6 spoons worth of energy. Simple tasks like showering can suck up 3 spoons for a person in pain, leaving them to choose the rest of the day’s activities carefully.

Although the story highlights her battle with lupus, it is a theory that speaks for many with chronic pain (CFS, rheumatoid arthritis, fibromyalgia, myalgic enchephalomyelitis-ME, etc). I’ll only speak for myself but fibromyalgia means these things:

 

  1. I have to plan ahead EVERY DAY! I wake up with a certain amount of spoons. Cleaning the kitchen may not be an option in the evening if I have used all my spoons at work. My days off are also planned accordingly. Sometimes being exhausted at night may mean that I’ll feel worse the next day. I don’t want to use up all my spoons every day because the unused spoons don’t rollover.
  2. I am paranoid about getting sick. If you are sick and you interact with me I could be sick for weeks. My immune system is weak. I have literally fallen sick HOURS after being near a client who didn’t disclose that they “weren’t feeling too good today.” Most people with fibromyalgia or autoimmune disorders need to be VERY careful about being near sick people. I have literally passed out in stores not knowing that I had a fever.
  3. Fibromyalgia means I have to say no all the time. No, I can’t host such and such event at my house. No, I can’t help out with _____. No. Sorry but I can’t stay that long because I am useless if I get less than 7 hours of sleep. Getting less than 7 hours of sleep feels like having the flu.
  4. Sometimes I forget about things because fibromyalgia affects the brain. It’s called “fibro fog.” I could start a sentence and then forget what the hell I meant to say. I forget names of streets, people, where I am….you get the picture. You’d be a sweetheart to get me Post-It notes for my birthday.

But this post is not meant for me to gripe. It’s to boost awareness. I recommend finding a support group to help you share your thoughts and gain knowledge about your illness. The knowledge and support I gained from a local Fibromyalgia Support Group helped me and my family learn more about what to expect.

And I know I’m not alone.

And warriors like myself, who want to still do “normal” things, just want some understanding. I don’t mean to be a party pooper. I don’t mean to sit out on some activities. And I’m not trying to be rude by running away from you or your coughing child.

I don't want to count spoons every day. Click To Tweet

Recommended Resource: National Fibromyalgia and Chronic Pain Association 

I also have a Pinterest board for Fibromyalgia support filled with healthy recipes, quotes and remedies for our painful symptoms. Follow me today!

My Letter To Anyone Feeling Lost Or Stuck

This week’s inspiration comes from the major motion picture, “The Shack.” It’s an inspirational movie based off a best-selling book, which centers on the themes of faith, forgiveness and grief.

This post will share two major messages I took from the movie that can be applied to anyone who’s feeling stuck or lost.

You’re Not Stuck Because You Can’t. You’re Stuck Because You Won’t.

In this era of the “can’t even” complainers, it’s easy to use this as an excuse to avoid something. When people say they feel stuck, are their feet actually cemented in the ground? Think about the difference between “can’t” and “won’t.” Do you know someone who defeated the odds due to disabilities or restrictions in their life? Before I was diagnosed with fibromyalgia, I enjoyed running. I thought I wouldn’t be able to run a marathon because of my physical weakness. I watched people competing in a local Ironman event and I saw athletes with physical disabilities competing. They may have had prosthetic limbs but they still competed. Technically, I COULD run again. I pushed my limitations into the “I won’t” category and wrote it off. What do you tell your kids when they throw down their homework in frustration? Are you challenging their “I can’t”, with “oh no honey, you MUST!” How does that message apply to you?

What are you avoiding that is causing you to be stuck?

How can you move your “CAN'T” to the “MUST” stage? Click To Tweet

If Anything Matters, Then Everything Matters. Everything You Do Is Important.

In the context of this movie, these messages applied to forgiveness (no spoilers, I promise). One way to reach forgiveness is to continue to do kind deeds. In the midst of hurt and pain, there still has to be something that matters. Click To Tweet One of the characters explained how our simple acts and treasured values still have a place in this world, even when tragedy strikes us or when the world gets ugly.

This message is tough in the midst of the fogs of grief. Our values can get lost during tragedy, illness, major life changes or losses. Instead of telling ourselves or our loved ones, “Well you still have to work despite all this. You still have to be a mom/dad/parent, etc”, let’s share with them how much they still matter. Let’s give them the space to try to figure out their feelings. Figuring out feelings on top of a busy schedule can be overwhelming.

I see this play out with survivors of abuse. They have to move to a safer home, continue to pay bills, feed the kids, take them to school & daycare, make dinner and figure out how to stay safe from their abuser. Their daily routines take on a new level of importance and survival. Routines can overshadow their values, causing them to feel stuck or lost. As a therapist, I thank them for coming to their appointments and being fueled by courage. That hour in my office may be the only time they are recognized for their importance and value in this world.

I have been brought to my knees due to grief 4 times in my life. I could actually add one more if you include my fibromyalgia diagnosis. I’ll never recover from fibro. My body will never be the same. I felt like I mourned the loss of my healthy self.  But whether I mope on the sideline of a triathlon or not, everything I do is important. My values are still the same whether I am exhausted or not.

My values are stronger than my diagnosis.

My values are stronger than my physical pains.

Restricting myself to labels and excuses of “I can’t even” leaves me with what? Is it a cop out from life?

I don’t think two people could watch this movie and leave with the same emotion. Our childhood experiences, history of resentments and current messes are unique. Yet this movie begs the question, “What’s next?”

In the grand scheme of your life, what’s next? Where are your feet? Are they moving or are they cemented? Regardless of where you are standing, everything you do is important.

 

 

 

 

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