Take That, Fibromyalgia!

by Susan H. McIntyre
(Rancho Cucamonga, CA, USA)

I have fibromyalgia, many other chronic illnesses, and I am a breast cancer survivor. I had to find a way to live with these things and find joy in being a survivor. This poem is about redefining the limits on our lives, and finding a new way to live. We must find a new normal, a new us, but also new dreams. These keep hope and joy alive. I hope you enjoy this poem.

Take That, Fibromyalgia!

Today I hurt from head to toe
Inside and outside –
Why I don’t know.
They call it fibromyalgia.

To give it a name
Helps doctors, not me -
I must play the game
Of fibromyalgia.

I pace my activities,
Rest when I must,
Respect sensitivities
Due to fibromyalgia.

It has a name
But it’s not enough.
Labelling defines the game
But not fibromyalgia.

I take pills, try to mend -
I do what they say,
But I still must tend
To fibromyalgia.

My days are defined
By pain and fatigue,
Self-care refined
Through fibromyalgia.

What I wanted to do
I no longer can.
My days are blue
Thanks to fibromyalgia.

I must find a way
To find the new me
Identity that stays
Even with fibromyalgia.

A dream is a must
For lifting my heart
Old ones are dust
Thanks to fibromyalgia.

I will search with my mind
For a brand new dream
For my legs are tired
From fibromyalgia.

What do I like?
What can I still do?
What make my joy spike
Despite fibromyalgia?

This I will look on
With renewed heart.
A new dream is born -
Take that, fibromyalgia!

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Thanks Sue
by: New me

Hi Sue
Thanks for your words of encouragement for us with Fibromyalgia as well!
I’m new on here as of yesterday and I finally have hope after reading your poem and your comments.
I won’t get into my story as I sent it in last night.
Can I e-mail you sometime?
After almost five years and lots of help in the way of medications and specialists I’m still in chronic pain.
I refuse to give up hope and have a positive attitude most of the time.
Your comments really touched me.
Thanks
Dianne

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ty
by: Anonymous

beautifully said - ty for sharing

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When all we see are losses
by: Susan H McIntyre

It is hard to adjust when life hits hard with fibromyalgia. When we can't imagine the future, perhaps it is because we are still grieving. I found it helpful to write a farewell/hello journal. I wrote good-byes to the dreams that I had. I honored them by taking the time to write about what I had hoped for, why I looked forward to certain things, and the ideal life I had in mind before fibromyalgia.

Then, since I couldn't go forward, I went backward. I looked at my past. I wrote about all the things I did that I enjoyed. I even looked as far back as high school (I'm 57!). I found that I had done all the things that were important to me at the time. What's more, I found that there were certain things I enjoyed in high school that I could still do - draw, knit, wonder about things. For me, the biggest surprise was rediscovering my love of writing.

I wonder how much of our future actually lies in the grieving and looking back over our lives for clues....

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Via twitter
by: Beth Nelson

So true, brought me to tears!

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Touched!
by: Michelle UK

Your poem really touched me. Thank you for sharing it.

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New Dreams will come later
by: Anonymous

It is difficult to adjust to fibromyalgia. It affects so many aspects of our daily life. The first thing we need to do is grieve for the loss of our old lifestyles. Then we look around at our new "life landscape". We get to know it, how to navigate it. Just know that fibromyalgia is not the end of life, but the beginning of a new life. We edit out what is painful, unnecessary, exhausting, and then we add what brings joy later. Right now you are adjusting. That's good. Grieve. Grieve hard. It's OK. Then look at your new life. Study it. What is possible, what is not? We have been living with limits before, and now those limits have shifted. I share your grief. Without my medications, I would be bedridden. But after some time has passed, the medications were tweaked to meet my needs, I have learned (the hard way) to pace my activities and to say no to people nicely, and I use accessories such as canes and walkers to get around town. They allow me to stretch my stamina so I can do things. Know that I share your grief, as I also miss my old life. But give it time and you will learn the new landscape.

It's rather like buying a ticket to Italy and landing in Holland instead. You expected to see Rome, and get angry at being in the unexpected location. Later on, you notice there are beautiful tulips and windmills. But not at first.

Learn as much as you can about fibro. It will help you to tame the monster so he does not totally dominate your days. There are ways we can work around some of the fibro, but first we must learn how fibro behaves. It is a wily monster that loves to creep into everything, but we can outwit him in the long run and still get a new life.

Talk to me anytime about what's going on how you are adjusting to your new life. We can walk together through your new life landscape.
Gentle hugs,
Sue

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You are not alone!
by: Susan H McIntyre

The first part of getting used to the new reality is knowing that you are not alone. I am glad you are getting to know some of the rest of us. We are a community of fibro people, and sharing the journey is one way we get through it all. I am pleased that you enjoyed the poem. I am even more pleased that you are reaching out to others with fibro. That is a proactive stand, and I think you are on the right path. Give it time, get to know it, and know that there are people who care - including me! - Susan

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Better Times Will Come
by: S.H. McIntyre

I am 57 and my life fell into medical chaos at 42, the very year I thought I was done with raising children at home and would go back to work. It is understandable that you would be grieving for lost dreams. Anything that dies is grieved for, including dreams and plans. Take that time to grieve for them. They deserve it. Then get to know the new landscape of your life. One step at a time. If you take it slow and recognize that there is a grieving process that must take place, you will move on eventually. If it would encourage you, please visit my website, www.susanhmcintyre.com and click on the upper bar that allows you to see exerpts to my book, Orphan Dreams. No, I'm not trying to get anyone to buy it. I want you to read the poem "Orphan Dreams". It will show you the future and give you hope. There is a dream who is an orphan, one that you will find one day unexpectedly. I will try to retype it to post here, but go ahead and look at it now. Know that things will get better. Let's walk together through this. Hugs, Susan

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Relate
by: Carla

I surely relate to what you are saying. Accepting my new reality is so difficult. It is something I am not having much success at. As far as new dreams for the future, I can't find them. To think of all the ones that are no longer possible causes me to experience great sadness. I never imagined being in this spot at the age of 53.
Thanks for the poem.

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