Living with Fibromyalgia
I’ve often been asked about fibromyalgia and how I manage to practice yoga, raise 2 children, travel the world, and be successful in my businesses while living with severe chronic pain. I want to share with you what it’s really like and encourage others dealing with this challenge.
Here is what a normal day looks like living with the unexplained illness called fibromyalgia.
Disclaimer: First, let me say that just because a doctor diagnosed me with fibromyalgia and health professionals agree that is my diagnosis, I don’t always agree with it. I believe there could be many reasons for my pain, and I’m not really one to accept labels. However, I will say I have “fibromyalgia” so that I can help and inspire others with the same diagnosis. It is simply easier to have a name for it, but in no way do I claim the diagnosis. If I want to claim anything it would be something like… “badass.”:)
7AM: My alarm goes off. I immediately feel burning pain in my wrists, stiffness in my neck and aching in my back. My first thought is, “Will this wear off or is this going to be one of those days?” I lay there for a few minutes, trying to convince myself that getting up is the best thing I can do for my pain. I’m grouchy. I’m always grouchy in the morning. In fact, don’t talk to me until I’ve had coffee and sat quietly for at least a good hour. As I meander downstairs to get coffee, my children remind me that there are no “sick days” and that being a mom is a 24/7 job. Regardless of my pain, I’m working today. I make my coffee first, get the kids their breakfast second and then proceed to get myself ready for the day.
10AM: After dropping the kids at school, I finally begin to feel somewhat human. I sit at my desk but the pain of sitting causes me to usually lay on the couch or the floor working on my computer from a supine position.
2PM: At last, I’m ready to move my body. This is something that I force myself to do 6 days a week. I wish I was one of those yogis who loved to practice, but that’s never been me. What’s to love about everything hurting and feeling like you’re 85 years old? Nothing. People who don’t have fibromyalgia can’t understand how there is always something that hurts… always. I don’t think I can remember a pain free day. I rate my “feeling good” days based on how intense the pain is rather than if there is no pain because … well, NO pain has never happened. I don’t beat myself up about not loving my practice, I just set my schedule to move my body by 2PM and I don’t allow myself an “out.” I know this commitment helps me deal with the challenges of living with fibromyalgia.
4PM: It’s time to pick up the kids from school and sit (yeah, sitting again) in that dreaded car pick up line. 45 minutes of sitting is enough to ruin any “good day” I was having in my body. My back immediately starts to ache, my sciatica flares and starts burning down my leg, and my fingers and legs go numb. If I’m having a really bad fibro day, I will ask my husband to get the kids. Lucky for me, he can often do it. I try to avoid sitting in cars at all costs. The “sitting game” as I call it is a constant battle. I make most decisions based on how long I will have to sit somewhere and for what length of time. Sounds funny, but true.
6PM: Once the kids are home, its time to make dinner. I must admit, I hate cooking. It is definitely not my favorite activity. It is not so much that I hate cooking as it is that I hate standing. Standing is my number two trigger after sitting. I use my dinner making time to do a little kitchen yoga to help my body not ache from standing there while the food cooks. I will literally do chaturanga pushups and L-sits on my kitchen floor while my pot of water boils! And, who couldn’t use a few extra chaturangas?
8PM: After dinner my family usually wants to watch a movie … yeah, the sitting thing again. I make it work by stretching on the floor while we all watch something. It must be annoying to them but they never say anything. They simply just ignore me as I do a mini yin yoga session on the floor in front of them.
10PM: Bedtime. I’m exhausted but somehow I can’t sleep. I take a hot bath, read a good book and then force myself to bed no later than 11. Sleeping can be really difficult for me as finding a comfortable position can be nearly impossible. Once asleep, I’m usually okay, but quite often I wake to stabbing pain in my arms, legs or back. Nothing makes the pain go away so I try to breathe, pray and hope to fall back asleep.
Here’s the real kicker: I’ve lived with this my entire life. Because I am high functioning and I look completely healthy, most people would never know that I am in constant pain. There are times when people just don’t understand why I have to say no to going somewhere or doing something because I seem so “normal” and active to them. As I type this now, my left wrist is on fire and my low back is aching. It is just my life and I try not to dwell on what I can’t change. I do my best to focus on what is working for me and I let go of what other people may think.
I try to live by this rule: Be kind. Everyone is fighting their own battle. Living with Fibromyalgia has taught me that you can’t judge a book by its cover. You never know the challenges that someone else lives with until you walk a mile in their shoes. What someone might show on the outside isn’t always what is happening on the inside. In a way, Fibromyalgia has been my biggest blessing. It has given me tolerance and patience for not only myself but others as well. I am grateful for this body and all it can do. Despite the constant pain, I wouldn’t change a thing.
If this blog helps or encourages you please share!