Tuesday, September 9, 2008

Waking Up Changed: My Life with Fibromyalgia


I remember the morning I woke up and felt like a train had hit me. I just wish I could remember the day before that. I wish I could feel what it felt like before the train hit me. Who knew when I went to bed the night before that I would never wake up again without pain?
That first year was the hardest. Doctor after doctor. Day after day. All the symptoms that doctors couldn't explain: unbelievable pain, muscles feeling like they are on fire, exhaustion that made everyday tasks impossible, migraines, anxiety, IBS, difficulty walking, numbness in legs and hands, difficulty with memory (what I call fibro-fog), chest pain, dizziness, ...
I remember sitting in the office of the doctor who finally diagnosed me. Saying he diagnosed me is kind of a joke. He drew some blood and left hubs and I in a room. When he walked back in he handed me a pamphlet that said "Fibromyalgia" on the front and said, "Read this I'll be right back." When he came back he said, "Sounds like you doesn't it?" Hubs and I agreed. He said, "Yep. It is you. Learn to live with it. It isn't life threatening, but it is life debilitating. You'll probably be in a wheelchair by age 35. Forget kids." He had a real bedside manner.
He prescribed me several medications that were popular at the time. I took them for a while, but soon I couldn't tell what were side effects from the medication and what was real problems from the fibromyalgia. I began scouring the internet for any and all information on fibromyalgia. I made the decision to quit taking the medications because they did not seem to be helping me in any positive ways.
Hubs and I started walking at the small park behind our house. Some days I couldn't walk at all and some days I could walk around for my "goal". Regardless, starting exercise helped improve not only my attitude, but it helped my mobility. Hubs also bought me an elliptical trainer which allows me to walk anytime and in any weather which is nice when you live in Mississippi.
It didn't take me long after I was diagnosed to get tired of being "sick". I knew that I was going to have to deal with this on a daily basis, but I didn't want it to be the center of our life. Hubs and I developed a number system so that I could let him know how I was feeling without having to talk about my illness all the time. If I tell him I am on a "10" he knows that I am hurting really bad and I am not going to be able to handle normal things like cooking or carpool. If I am on a "1", he better watch out because I am likely to tear the closets apart and chase him around the bedroom. Ha!
A lot of people have asked me what it is like having fibromyalgia. I am not sure how to explain that.
1. Imagine waking up with the flu. You know that horrible, all over aching feeling that you have when you have the flu? Imagine it never going away.
2. Take five clothespins and put one on the end of each of your fingers on your left hand. Leave it on there for as long as you possibly can. Now imagine never being to take it off.
That is a sad way to try to describe it, but I can't really describe to you what it is like anymore than someone with diabetes, cancer or MS can describe what it is like. All I can say is that I wouldn't wish fibromyalgia on my worst enemy.
Pain has become my new "normal". Some days I can completely ignore it and some days I can't, but my fibromyalgia knows that I intend to control it instead of it controlling me.
Because this is my life!

21 comments:

Conservative Belle said...

I think your attitude about it is amazing. And the support of your husband is refreshing to read about. I know others who have this and they are up and down too.

Hang in there and remember I'm a neighbor, so to speak, so email me if I can ever help you. I know it is tough to ask for help sometimes, even from strangers, but I would consider it a blessing to help.

Dr. Wifey said...

so sorry you have to live with that, hun :( my mom has it, so i have seen what you go through. do you have chronic fatigue as well? mom does

Hot Tub Lizzy said...

I had no idea you were dealing with this. My best friends sister has it... it's such a struggle. She has the pain but the big thing for her is the constant dizziness. But she's such a trooper... you would hardly ever know she is sick - but sometimes that's not good because people forget and then get frustrated when she's having a bad day.

Big hugs sweetie - and thank you for sharing your struggle with us.

mayberry said...

I'm so glad that you have a positive attitude and have found ways to MANAGE it instead of drugging yourself with some of the stuff that gets prescribed for fibro. My ex MIL has it and she has been on some terrible prescriptions.

Juice said...

Thanks for sharing your story. I'd love a follow up blog from you on ways friends and family can be supportive.

i'm black betty said...

i'm so sorry, honey. i understand more that most...my mom has this very debilitating illness. my heart goes out to you. i watch her hurt every day. :(

(((HUGS)))

Crystal said...

Wow. Being able to deal with this the way you do, and still manage to do so much for your family is another of the many reasons you are an AMAZING person.

From the Doghouse said...

Here's wishing you a lifetime full of 1s!

Sara said...

I admire you for fighting through the pain when you can and doing all the great things that you do.

Confessions of A Mississippi Mom said...

Wow I had no idea of your illness. I admire you for your strengh this is hard to have to go through. With having kids and all you are very motivational for people who are suffering with this very same illness.

K Storm said...

I first became aware of this illness about 15 years ago. My hubby is a PT and was seeing some patients with it. He facilitated a "managing your fibromyalgia" kind of workshop sponsored by the Arthritis Foundation. He said it is one of those conditions that the medical community was just beginning to understand. It is more widespread than we even realize sometimes. Thanks for sharing your story.

Deanna said...

Belle - Thanks so much! My husband is amazing. Not everyone with fibromyalgia is as lucky as I am.

Wifey - I am sorry your Mom has this. I haven't been diagnosed with CFS, but boy do I get exhausted.

Lizzy - That is why it is tough having an "invisible" illness. Being sick, but not looking sick.

Mayberry - Attitude is everything!

Juice - That is a great idea.

Betty - Bless your Mom's heart.

Crystal - Thanks, sweetie! (Send pumpkin butter! Ha!)

Doghouse - I'll second that!

Sara - I don't know about great, but trying to live each day to the fullest.

Confessions - My kids and hubs are my motivation.

Deanna said...

K - It is amazing the number of people who have it.

Willow said...

Deanna -- you just constantly amaze me. I would have had NO IDEA that you've got fibromyalgia. I applaud your attitude of living life to the fullest and kind of "you have the disease but the disease doesn't have you" and that you embrace each day and are thankful in that day.

Deanna said...

Willow - There are moments when I think "I just need some slack. I feel awful." BUT, I don't want my boys to remember me as sick. I want them to remember me as Mom.

Sandi said...

I had no idea you had FM ... Deanna, what a great post. The worst thing about it is the disbelief, the skepticism. Even some doctors shrug it off (it's hard to diagnose) ... in Tupelo there were support groups. Hope you're able to find one in this area. They really do help.

Miss Mud Puddle said...

You are a very strong woman!!!!!!!

Deanna said...

Sandi - I went to a support group when I was first diagnosed, but it wasn't a very good one. Lots of older women who only complained for an entire hour. I needed something that was more on the support side.

Miss Mud - Strong is debatable, but definitely stubborn.

rtsponderings said...

Chronic pain and fatigue are issues for me, too. My problem is a rotting thyroid, though. I've been having some better, stronger days. However, I can relate to the "will I ever feel well again" question. I'll pray for you. :)

Deanna said...

RT - And I for you!

Carrie said...

Deanna, what can I say? I'm amazed that you are able to have such a wonderful attitude about such a debilitating disease! The Lord has instilled such an incredible spirit in you!

I can't even imagine what it would be like to live with that pain all the time, yet you are always filled with grace and love.

Please know that I am praying that the Lord will lay his hands on you and heal you.