When I found out that May is Fibromyalgia Awareness Month, I invited my friend Sara to share some thoughts with you. I urge you to read her story carefully. Compassion is always needed when you deal with an invisible illness. Here is part two of her story. You can read part 1 here.
“My name is Sara and I wanted to share a bit of my story and living with Fibromyalgia. May is Fibromyalgia Awareness Month and this invisible illness needs awareness.
I’ve been thinking all week and have compiled a list of things I wish people knew and understood about fibromyalgia.
1. Chronic pain in one area of your body is not Fibromyalgia. I think the most insulting thing I’ve ever heard anyone say to me is, “I have this pain in my shoulder. I think it might be Fibromyalgia.” Fibromyalgia is a complex syndrome that affects multiple systems of your body. The nervous system goes haywire, causing insomnia, pain, and sensory processing issues. The immune system and endocrine systems can malfunction, causing a variety of hormonal and immune system abnormalities. The liver, kidneys, bowel and lymph system can become sluggish and toxic. There can be oxidative stress and mitochondrial dysfunction right down to cells in our body. It’s a system-wide malfunction, not a single ache in a single muscle.
2. I am not lazy! I wish I could go out and socialize more. I wish I could keep our house cleaner, volunteer at my kids’ schools, and run marathons. I don’t want to lay on the couch or bed and have to take naps every day. I do it because I need to in order to keep myself somewhat functional.
3. Tired is not the same thing for a healthy person as it is for a person with a chronic or serious illness. Do you find it hard to even move your arms, legs, head or even open your mouth? Do your muscles scream with fatigue from just walking from one room to another? Will it take you days, even weeks to recover from attending this event? If you answered no, then you have no idea how tired a chronically ill person can feel.
4. It can take days, weeks or even months for a person with Fibromyalgia to recover from a time of stress or overdoing it. A day out of the house usually means many more days on the couch or in bed. I can’t just go out one day and bounce back from it after a good night’s sleep.
5. Overdoing causes a heck of a lot more misery than just fatigue. Getting overtired causes pain to increase, sleep to become worse and can cause a host of neurological symptoms. For me, feeling tired isn’t the worst consequence of too much activity. It’s getting a bad case of zombie brain, being unable to move my body or talk properly or even think semi-straight. It’s being unable to walk without bumping into walls. It’s lacking the attention span to read, follow a conversation or even watch TV. It’s feeling like I’m going to jump out of my skin every time I hear a noise. It’s the threat of these symptoms that keep me from taking on too much. I have a family to take care of. I need to be somewhat functional.
6. Brain dysfunction is part of the Fibro package. Not being able to remember words, names or where I am even, does not mean I’m stupid. It just means my brain is dysfunctioning at the moment. The brain fog can be powerful enough to make me forget my phone number, my age, my birthday, my kids birthdays or even my own name, so give me a break if I forget to do something.
7. I will never be the same person I was before I had Fibromyalgia. Chronic pain and fatigue change a person. They require you to get clear about who you are and what’s important to you. Even if the pain, fatigue and brain dysfunction were gone tomorrow, I wouldn’t return to who I was before. I know myself better now. I know my priorities and I know how to be more true to who I am.
8. Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal.
9. Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. I may need to cancel a previous commitment at the last-minute. If this happens, please do not take it personally.
10. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand.
If you know someone living with Fibromyalgia or chronic pain, remember we could use some of that compassion and understanding reflected back our way.”
Thank you Sara for enlightening us regarding this invisible illness.
I invite you to connect with me on Facebook at www.Facebook.com/laurasjourneyofhope.