Article by Wendy McCance
A few days ago I wrote an article about what happens when you have fibromyalgia and don’t get enough sleep. I started thinking about what I have been going through the last few days and wanted to share it. I am hoping it helps anyone who suffers from an autoimmune disease to know they are not alone and that others are going through the same thing.
When I lost my sleep cycle, I began to feel I had lost my life. I have gone through this feeling numerous times and each time, the pain I experience is not just physical but emotional as well.
With lack of sleep, each day has become a struggle to get through the responsibilities I have as a mom. I am too groggy and sore to function very well.
When the kids are at school, I try to nap. I am desperate to grab any sleep I can. When they get home, I am cleaning up around the house, making dinner and attempting to be present in their lives. It’s a struggle and I feel like a shell of myself.
The guilt I have gone through has triggered some major depression. I haven’t been able to work other than taking on writing jobs. The jobs aren’t steady enough yet to feel as though I can call what I do a career.
In the mean time, I feel like I have let everyone down. I have gone through more attempts at an outside job than I can count. Each time, I end up crashing and putting my health into a turmoil that spins out of control. I can’t sit for too long or stand for any length of time. The smallest exertion is overwhelming and exhausting. I end up in horrible shape. Dealing with fibromyalgia and managing the symptoms is such a very delicate balancing act. Slightly overdoing it puts me out of commission for weeks.
So I have a daughter who is graduating high school. With tears in my eyes, I have to admit that I feel like I have lost my life. I am in no shape to walk the mall with her to find a dress. It’s breaking my heart because it was a moment she really wanted to share with me and I am not well enough to do it.
The lack of income on my part means that I am struggling to figure out where we will find the money for my daughters dress. This is not the way I envisioned my daughter finishing up high school. I feel like I have failed to become the person I thought I would be.
With fibromyalgia, I haven’t been able to go to the gym with my husband. My self-esteem has hit an all time low. I feel like a prisoner trapped in a house with no way to get out of this nightmare.
It all comes down to this, I can handle pain, I can handle exhaustion even, but I can’t handle the lack of control. That’s what is eating me alive. My self-worth has faltered because I feel trapped in the house, I can’t keep myself in shape the way I would like, I don’t have the energy to go out with friends and if we are short on money, my options for fixing it are slim.
When people see me working my butt off on this blog and when I write about writing jobs I have gotten, it’s not that I have unusual amounts of ambition. I would call it sheer determination to make it work because there are no other options. Thankfully I love what I’m doing, but it’s fear that pushes me so hard.
To sum it up, I am constantly trying to figure out how to live a good life with this disease. I don’t want to be a victim but a survivor. There are many months when I can hum along fairly decently, accepting what is and tweak things so I can live my life as normally as possible. It’s those moments when I crash that makes the world feel like it’s caving in. My days become dark and the cycle of pain and exhaustion feel suffocating.
I know I will get through this because I’ve done it before. If anyone else can relate to what I have written, I just want you to know that you aren’t alone. Other people are facing dark times too. As I’ve learned though, you always see the darkest moments before the light begins to shine the brightest.
Stay strong and find new ways to persevere. Those creative ways that we find to manage with what we have seems to be what makes the moments after the darkness so magical and full of exciting surprises. These are surprises you wouldn’t have received if you hadn’t had to be pushed so hard to find a way to survive.
Wishing everyone all the best.
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Wendy McCance
To contact Wendy McCance about a writing assignment, interview or speaking engagement, please email her at: [email protected]
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Howdy! Someone in my Myspace group shared this website with us so I
came to look it over. I’m definitely loving the information. I’m book-marking
and will be tweeting this to my followers! Terrific blog
and amazing design.
Thank you.
Wow. Wendy I have not known you long at all. I was immediately drawn to your blog and I don’t even remember how. Silly me. I do believe God puts people in our paths for a reason and I really feel I can learn so much from you. I was surprised to learn you suffer from fibromyalgia and wish I could take it all away. Living with pain is no fun. I was in a car accident a number of years ago and still to this day have daily pain and never sleep well at night. It seems unless we have a cast or are unable to walk people don’t realize how much you are really hurting. We can only do the best we can with each day. Take good care. hugs and prayers, Renee
I am so sorry that you deal with pain and sleeplessness too. Wishing you all the best.
Thank-you Wendy.
When I read your words I feel like I could have written them. I can no longer work in an office because I can’t depend on my body to come through for me. I can’t walk in a mall and shop for the afternoon. The hardest part is that I look perfectly normal and when I say I can’t do something, people don’t understand why and, I feel, think less of me. Writing is something I’ve always enjoyed doing but was always too busy with other things in life. Now, I write, because I can do that, at least. It brings much satisfaction. When I sit at my computer for hours I feel like I’m “working” like all my friends. You are still such a vital and dynamic individual despite your health challenges, and loved by your family and friends. Don’t forget that part on the bad days.
Thanks so much Beverly. I felt the same way when I read your words. The hardest part of having fibromyalgia is not the physical symptoms, but how you feel about yourself emotionally. I especially hate that feeling that people don’t get it. It makes me feel awful when I can’t do what I would like and people don’t understand. Thanks so much for your comment. It meant the world to me. Take care.
Storms keep coming and going in the life and we come to learn about the passing of storm only after it passes away and Sun shows.
More important is the attitude with which we face each storm.
Till date, I faced many life threatening storms in my life span of 68 years, escaped death thrice, faced 8 heart attacks in just 32 days including a cardiac arrest at the age of 42, had lost memory after surviving the arrest as I could be revived only after 35 minutes of pumping and 6 shocks. My entire left (from head to great toe) remained almost paralyzed for over 2 years due to ‘almost nil blood supply’ during cardiac arrest but I faced everything with a daunting spirit and very positive attitude and regained almost complete normalcy due this fighting spirit.
I believe that “Im-possible” within my personal human limits and still maintain the same spirit.
Thank you for such an inspiring comment. You sound very wise.
AW, my friend. I am with you there. I have suffered from serious depression in my life. I still work at to this day. It is like a vortex that sucks me and it takes all that I have to keep the vortex from taking over. Thankfully I have discerned the triggers and have learned how to overcome them when they rear there ugly head. I know that you will find a way. You have it in you and that will give you the strength to make your dreams come true. I am here if you need me.
You are so sweet. Thanks for sharing your experience and for the kind words.
You are inspirational. I have an immune disease and have a loss of hearing. I cannot hear well on a land line phone so it is limiting the kind of work I can do. I’m searching to find out what type of jobs there are for people like me. I love following you and each article you write hits on something I can relate to. Be happy.
Thanks so much for your sweet comment. It’s readers like you that keep me feeling inspired. Thanks again.
“And it came to pass…” I’m so glad you have that realization that the sun will shine again. For now, relax your mind in little ways: sit and observe something lovely now and then and REFUSE to think. (When we’re thinking we tend to spin our wheels in self-bashing or searching for a quick way out.)
I’m one, too, who suffers from the delusion that my value in this world is defined by what I accomplish. Sometimes folks ask and I have to confess I haven’t done anything all week -except for a dozen blog posts, working on my book and the household basics -and I feel so worthless because I WANT to have done so much more. That’s a tough one to beat!
Thank God these down times aren’t lost to us; we can learn more about life, health, etc., and then help others — as you have been doing.
Your description of about feeling you haven’t done anything sounds just like the way I look at it. Your advice is wonderful. I need to give myself a break. Thanks.
Wendy, my heart goes out to you. You remain inspirational, while struggling with your own pain. Your daughters will not think any the worse of you for not being able to do the things with them, you long to do. Your love for them shines through, and I am sure they feel that and love you for being the best you, that you can be. God bless.
Thanks Mandy, I appreciate your comment.