I try to keep my blogs upbeat and positive. They are based on true experiences and
living out dreams. I found this article tough to write. Living with Fibromyalgia is a life long journey. Struggling and reaching my dreams did not happen overnight. If I'm truly going to be an
inspiration, especially to new patients with Fibromyalgia, you
should know that I grieved for a long time over the life I once had.
This article may be tough to read, but I hope you will stay with it. This is how my journey began and the
message I want to impart is important. There are days when my true feelings about this disease creep up
and force me to deal with the loss it created in my life. The reason I want to talk about that grief
today is so others with this disease can know they are not alone.
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| "...plans to give you hope and a future" |
I don't like to admit how I really feel about my illness because I am an eternal optimist.
It's my nature to look at the tragedies of my life and take the good
things out of them. It comes from
my dad; he was someone who overcame a horrible injury as a teenager, so giving
up isn't an option for me. I tell
myself "If Dad could overcome his disability, I should be able to do
it, too." However, there
are still powerful emotions to deal with.
Just because Dad made it, doesn't mean it was easy, or that it was easy
for me to rebuild or achieve one of my lifelong dreams. While his life is inspiring to me and
helps me to continue reaching higher, it still doesn't change the fact that I HURT. It's been ten years since my wreck ... yet
some days it still hurts.
So, how do I really feel about Fibro? I hate it. I hate everything about it. I hate what it has done to my life. I hate that it's taken my career and devastated our financial situation. I hate that it's destroyed the active mother I once was. I hate what it's done to my relationships with family and friends. Most of all, I hate the fact that sometimes it feels like the whole world goes on without me. When I'm flaring and sick, I might spend several days lying in bed, wondering if life will ever be okay again.
Everything is more difficult for me to cope with during the winter months. When it's cold, my pain is increased and I "flare" more often. Coping is especially hard when I have frequent migraines, or sleepless nights. During those times I can't seem to engage my mind on other things. It seems like all I can do when I'm so sick that I can't get out of bed is to remember the morning when everything changed. I go over it in my mind, spinning "what if's" until I am ready to burst into tears from frustration and grief.
I have built a new life, but it didn’t happen overnight. It took years along with occasional counseling and LOTS of patience (something I have very little of … or so I’m told). It took two years for me to admit that I was so sick that I would never go back to my career, at least not the one I had. I waited another year before filing for my disability. It took shedding a lot of tears. When I say a lot of tears, I mean buckets. I would be lying if I said I don't miss my old life.
I still cry on occasion. I cry because I have to get the feelings out. If I don't grieve the losses that I have experienced (and I get reminded of those losses every single day) the emotional pain will pull me down so far that I will stop fighting this disease. I have to ask, “If I quit fighting, what's left?”
So, how do I really feel about Fibro? I hate it. I hate everything about it. I hate what it has done to my life. I hate that it's taken my career and devastated our financial situation. I hate that it's destroyed the active mother I once was. I hate what it's done to my relationships with family and friends. Most of all, I hate the fact that sometimes it feels like the whole world goes on without me. When I'm flaring and sick, I might spend several days lying in bed, wondering if life will ever be okay again.
Everything is more difficult for me to cope with during the winter months. When it's cold, my pain is increased and I "flare" more often. Coping is especially hard when I have frequent migraines, or sleepless nights. During those times I can't seem to engage my mind on other things. It seems like all I can do when I'm so sick that I can't get out of bed is to remember the morning when everything changed. I go over it in my mind, spinning "what if's" until I am ready to burst into tears from frustration and grief.
I have built a new life, but it didn’t happen overnight. It took years along with occasional counseling and LOTS of patience (something I have very little of … or so I’m told). It took two years for me to admit that I was so sick that I would never go back to my career, at least not the one I had. I waited another year before filing for my disability. It took shedding a lot of tears. When I say a lot of tears, I mean buckets. I would be lying if I said I don't miss my old life.
I still cry on occasion. I cry because I have to get the feelings out. If I don't grieve the losses that I have experienced (and I get reminded of those losses every single day) the emotional pain will pull me down so far that I will stop fighting this disease. I have to ask, “If I quit fighting, what's left?”
Nothing. That's what's left.
Absolutely nothing.
So I might have to take a PJ day now and then. I might have to cry
for a while. I might be absent for
a few days, or even a week or more. Eventually I WILL get up, I will keep
fighting.
Ten years ago I didn't know what was wrong. I thought I was just stressed. I didn't know what to do, I was confused and in pain. I couldn't walk without limping. Everything was so hard to do! I was at the hospital every other week with a migraine. The doctors began to think I was seeking drugs. Nothing could have been further from the truth. I was mortified. It just added to the horror of that time. My husband stayed by my side, fighting to find answers, never doubting me. I'm one of the lucky wives.
Ten years ago I didn't know what was wrong. I thought I was just stressed. I didn't know what to do, I was confused and in pain. I couldn't walk without limping. Everything was so hard to do! I was at the hospital every other week with a migraine. The doctors began to think I was seeking drugs. Nothing could have been further from the truth. I was mortified. It just added to the horror of that time. My husband stayed by my side, fighting to find answers, never doubting me. I'm one of the lucky wives.
Thankfully God is merciful and I was referred to a specialist who
understood what was going on immediately. That's when things started to change
for the better. The healing began
both emotionally and physically. While I will never be cured completely, the
symptoms slowly came under control and the pain was improving. The limp went away and we found a
migraine abortive that helped.
I went through a lot of testing, which led to more diagnosis. There were problems of which we were unaware. Armed with answers, the problems that were making my condition so unbearable could finally be treated.
If you are a Fibromyalgia patient, your treatment will be like your fingerprint, totally unique. It takes time to find the treatment that works for you. Don't give up, you will find it!
I went through a lot of testing, which led to more diagnosis. There were problems of which we were unaware. Armed with answers, the problems that were making my condition so unbearable could finally be treated.
If you are a Fibromyalgia patient, your treatment will be like your fingerprint, totally unique. It takes time to find the treatment that works for you. Don't give up, you will find it!
I still have sad times over the losses; however, I'm on a
completely new path! I am so
grateful for the good things in my life today! I'm not the same person I was back then, I think I'm
stronger. I cry now and then, but it's okay. Life isn't going to leave me behind; although there may be
times that I'm tempted to feel like it will.
Think of the tears and feelings of grief like they are the contents of a box on a shelf. Some days I have to take the box off the shelf, open it up and look at what is inside. When I’m ready, I put the box back on the shelf. I call them “cleansing tears”. When the tears stop ... and they will stop ... put the box back on the shelf, get up, and LIVE!
Think of the tears and feelings of grief like they are the contents of a box on a shelf. Some days I have to take the box off the shelf, open it up and look at what is inside. When I’m ready, I put the box back on the shelf. I call them “cleansing tears”. When the tears stop ... and they will stop ... put the box back on the shelf, get up, and LIVE!
The sun will rise tomorrow! I will rejoice for each day in the sunshine, riding my
horses, or spending time with my friends and family. I will continue thanking God for each happy day. As you keep fighting this disease, some day soon you will also look back and see just how far you have come!
Remember, your dreams are still achievable! Fibromyalgia might have taken the life you knew, but you still have a life ahead and it can be glorious!
If you need help, PLEASE, ask for it! Here is a wonderful link for the newly diagnosed from the National Fibromyalgia and Chronic Pain Awareness Association. They have a lot of resources for you. There are people out there that DO care and understand.
If you need help, PLEASE, ask for it! Here is a wonderful link for the newly diagnosed from the National Fibromyalgia and Chronic Pain Awareness Association. They have a lot of resources for you. There are people out there that DO care and understand.
"I know the plans I have for you," declares the Lord, "plans to prosper you and not harm you, plans to give you hope and a future." Jer. 29:11
Blessings,
Bobbie
© Robynn “Bobbie” Dinse / Follow Your Dreams-Tales From Beside The Wheel
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author. Feel free to link to "Follow your Dreams-Tales From Beside The Wheel"
Thank you!
What a great article. I have so been here myself. I'm still greiving what I can't do which makes me stark raving mad at times. But then think getting this upset does me absolutly no good at all, and so I stop, take a deep breath and then power on. Thanks Robynn for being a voice for us with this cronic condition. I too am dreading the day when I will have to file for disability, but one day it will be here, I just keep running from it. Keep up the wonderful work you do.
ReplyDelete"Ride till you can't ride no more," Juls Berghammer