Do you ever get that sick feeling in the pit of your stomach when you hear about another person still maintaining full-time employment and they have fibromyalgia? You know the feeling; your stomach ‘falls’ and you feel inadequate, incompetent, maybe even shame? That is what I was feeling last night when my husband told me his boss has fibromyalgia. His boss has many health issues but has now revealed fibromyalgia is also one of them. I couldn’t help it, I got that twinge in the pit of my stomach and feelings of inadequacies rushing through my very core. Why can I advocate for others but not myself? Why is it OK for others to do what they need to but not me? Why can I rationalize the differences each individual uses to cope with fibromyalgia and not myself? Why, why, why…?
I tell people who have fibromyalgia every day to give themselves a break, to listen to their bodies, to understand what they have is real. E-V-E-R-Y-D-A-Y. I am a co-administer of a Facebook page specifically for people with Fibromyalgia Syndrome. I counsel them to live their best life by doing what they need to. Their health has to be a priority. And I am proud of my group! There are members who are really struggling with this diagnosis. Men and women. They are in year one or two and the pain is the hardest to handle in the very beginning. Until you find the correct medication, the right therapy, exercise, and diet, your symptoms are all over the place. Once you get this down, your symptoms almost cycle.
- manageable pain
- symptoms and pain increase
- fibro flare
- fibro fog
- symptoms and pain decrease
- manageable pain
And it cycles like this at different speeds, again and again. When you are 20 years into it like me, I’m used to my level of manageable pain. My symptoms still cycle but not as quickly. I am fully prepared for them when they increase into a fibro flare and I experience the fibro fog.
So I have good pain days! Manageable pain days. Days I think, I really need to get a job. Then my husband steps in with a reality check. If I were working, cooking, and cleaning like a “normal” person, like the “old Kim” I would not have manageable pain days. So for now, I’m going to have to face and overcome my feelings of inadequacies and shame. I have chronic pain… chronic. That means forever.
The truth is I am first and foremost empathetic with others who have an illness. In my head, I know my facts. I know what I have, what I am facing, the best way for me to handle it, and that it is a life sentence. Period. But my heart aches for a season, a new season not filled with pain. I believe that there has to be hope, a wish for a cure. When I dream I am not limited in my activities. I like my dreams when I am free and there is no pain! When I meditate, I make up my own rules. I go to a place where there is no such thing as illness, and it is a wondrous season!
So to my friend who sent me the picture above and to you reading this, I want you to know I do own my diagnosis. I do what it takes to manage it. I try to improve what I know so I can do an even better job of coping. There is no harm in wanting to be better. I believe it’s healthy to have hope. I feel my heart wish for that new season but my knowledge shuts down the dreaming. I need to be present in my life as it is now. I have to cope. I have to manage. I need to share my knowledge and resources. However, there are times I like to listen to my heart and I let myself dream of the possibilities to come in a new season.