Chronically Fabulous
Updated: Nov 19, 2022
"If we couldn't laugh, we would all go insane." Some people quote Robert Frost as saying that. Most others say it was Jimmy Buffett. I'm gonna' go with Jimmy.
So, why am I using irreverence to start off a blog post about chronic illness? It's because if I didn't laugh at some of the crap that life has thrown my way, I would most certainly lose my mind. Besides, laughter releases endorphins - the body's natural pain killer.
If I think back to when I was younger, I remember always having some level of pain. I also happen to be accident prone, so I started to attribute my pain to those injuries. I broke my foot when I was nine as I was running up the steps of a log flume ride. During my short tenure on the high school kick line, I ruptured my left ACL in the middle of street during the homecoming day parade and almost took down a line of 10 girls with me. The following year, I tore my meniscus in the same knee. Follow that up with a series of unfortunate, but not too serious, car accidents that messed up my back. As the years followed, you can add in some slips, trips, tumbles, and falls. The collective "they" say that once you hurt yourself, you're never the same. I assumed that's what the residual pain was from.
Over the years, I did a few stints at physical therapy, neurology, and even a pain management doctor. The frustrating thing was that there was no medical treatment that helped me feel better. No steroid injections, anti-inflammatory medication, or muscle relaxer ever gave me relief. I finally ended up at a rheumatologist in 2014 after reaching a point where I couldn't handle the fatigue or pain any more. I handed the new doctor all of my x-rays and MRIs that could only confirm that I had bad knees and a bad back. My bloodwork was not helpful in making a diagnosis because there were no lingering viral infections and no autoimmune issues.
Before I continue, let me just say that I don't like going to doctors. I hate it, actually. I used to be the type of person who would wait until the last possible minute to go to a doctor to get myself checked. Why? When you go in for one problem, the doctor inevitably finds something else, and then they make you crazy. After all my knee surgeries and injections I subconsciously made the decision to stay the hell away from doctors. So, for me to wind up in a specialists office, things were pretty bad.
The rheumatologist took my medical history and reviewed all of my test results. Then, he conducted an exam where he manipulated "tender points" on various areas of my body. It felt like I had bad bruising everywhere he touched. He diagnosed me with Fibromyalgia on the spot and prescribed a muscle relaxer to take at night because it would help me sleep. When I told him how miserable I was feeling, he basically pouted at me and told me to limit my stress and try yoga.
That pissed me off. What kind of bubble was he living in? Life has stress! Lots of it! And that includes the stress from crap doctors who give crap advice.
Besides telling me that fibromyalgia is a chronic illness that gets worse with stress, the doctor had no other information for me. I learned quickly that the only way to get a handle on things was to educate myself...and get a different doctor.
According to the Mayo Clinic, "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals." Made sense to me.
"It is usually triggered by an extremely stressful or traumatic event, including viral infections and injuries". The injuries that I had sustained in my teens and 20s were somewhat responsible for the pain. More important, in the 5 years leading up to my diagnosis, I had been through hell: miscarriage, marital issues, two jobs, moved in with my parents with my then 3-year-old, bad knees, herniated discs...lived with my parents...
If you were to Google the words "stress" and "trauma, my face would no doubt pop up in the results.
After more research, I learned that your body does its healing while you're asleep and since fibromyalgia causes pain that frequently interrupts your sleep, your body never completely heals and you get stuck in a vicious cycle of pain and fatigue.
I finally had some understanding of how the disorder worked and I understood the real reason why the doctor gave me a muscle relaxer. As it turns out, Flexiril puts you into a sleep cycle in the same way as if you were to fall asleep naturally. I don't like it, of course. Especially since it makes me wake up confused and with cotton mouth.
One of the recommendations was to limit or eliminate gluten because it causes inflammation. Try explaining that to an Italian family where every single event involves carbohydrates. Pasta, bread, pastry, cakes, cookies, the list goes on. It's only now, after 7 years dealing with this mess, that I can say, "I'm not supposed to eat that" without getting an eye roll.
So, I made the changes to my diet. I am active every day and I try to lift weights 3 days a week. I take supplements. I stay hydrated and all the other fun healthy stuff. I know what my triggers are and I try to avoid them.
The point is, I do everything I'm supposed to do.
But guess what? I still have wicked flares that knock me out and keep me from working. A bad flare can give me brain fog so bad that I can't remember names and lose my train of thought. I can even become so hypersensitive to light and sound that I feel like punching people in the face.
Aside from the daily pain, I think the most frustrating thing about this whole fibromyalgia business is that, if you were to look at me right now, you would never know that I have an illness. As a rule, people seem to understand and accept that you have an illness if you actually look sick. Over the years, I've had to learn to walk through life with pain like it's normal. Of course, despite all my experience with this illness, despite everything that I've learned, there are definitely things that I'm still learning:
I'm still learning that it's okay to ask for help.
I'm still learning that it's okay to say "no".
I'm still learning that it's okay if I need to cancel plans because I feel like a hot mess.
I'm still learning that I shouldn't feel guilty for setting limits.
I'm still learning that I don't need to apologize for needing to rest.
I'm still learning to constantly be appreciative of my good days and the good things in my life: my family, my career, my sense of humor, my passion for making people laugh, and my ability to rock a cute dress and a pair of high heels.
This is me with chronic illness.
But this is also me with chronic illness.
It's all me and I'm fabulous.
National Fibromyalgia Association
