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.