Welcome! Did you know that May 12th is MECFS International Awareness Day, a day to bring attention to how MECFS affects those suffering from the illness? With that in mind, during the month of May, I’m joining in on Instagram with other chronically ill people on the below pictured spoonie challenges, posting once daily as able, to spread awareness on a variety of MECFS topics. In order to try to pace my energy as best as possible this month, while sharing awareness far and wide, I’ll be bringing that content over here to WordPress each Tuesday this month. This posts includes the first four days below.
Today’s prompts: My story & My health timeline
My story and My health timeline (This will probably be my longest post.) Summer of 2014 I got sick, it felt like a flu or virus. There were other subtle symptoms starting a few months earlier, but I was a ‘drink another cup of coffee and keep going’ person so I ignored them. At the time I fell ill I was working full time, had just finished homeschooling my son through high school, doing yoga almost daily, eating a whole food organic diet, and walking around 15 miles a week. In other words, I was healthy, active, and annoyingly happily😉, living my best life.
I remember my last day of work like it was yesterday. I was sick but pushing through. Someone above me told me I should go home. I knew that was code for I don’t want what you have so I packed up and left. I had no idea I’d never be back. I had no clue it was anything more than a sore throat, but I got worse, and worse, quickly … within a couple weeks. Doctors were telling me to push myself, stay active, which I now know was the worst possible advice. I still wonder if I’d focused on allowing my body to heal instead of trying (and failing) to stay active, would my body have self-corrected? If there was a test … if I’d tested positive, I would have known, but there’s still no approved MECFS test. About four months in I saw a Rheumatologist who diagnosed me with #CFS. I had no idea what that was and despite him telling me there’s no cure, I thought for sure I’d go home and find a cure online. That was nearly six years ago. My health has continued to decline. On top of the decline, I now have several/many other diagnoses. This wasn’t supposed to happen to me, I had so many plans, so much to do, and now I’m treading water every day. Waiting for a cure, waiting for treatment. So now I doodle, and post blogs on Tuesday, instead of working, exercising, taking vacations, walks on the beach, going out with friends, or all the things I used to do, the things I still long to do.
And finally, a little fun fact for you – a commonality between people with MECFS is that we were typically incredibly active and driven people. So, this illness (having a body that doesn’t recreate energy correctly, feels like torture, and we are all grieving. AM I generalizing? Yes. Because in this instance I dare you to find me one person with this illness who isn’t quickly moved to tears at the absolute loss of their life. If you’ve made it all the way down here, thank you.
Today’s prompts: Invisibility & Current feelings
MECFS is referred to as an invisible illness (An umbrella term for any medical condition that isn’t easily visible to others). Having an illness nobody can see comes with challenges, from doctors saying you “look fine”, to cold stares when you use a wheelchair or handicap parking.
MECFS is also a multi-systemic disease which impacts the immunological, neurological, cognitive, autonomic, and energy production systems of the body. Since it impacts so many parts of the body the symptoms can range from a few to over 100. Imagine if you will, an illness that is attacking you from what feels like all angles, but you look fine, and often your lab work is also pretty typical. Most doctors won’t help you because they can’t see anything wrong (not even going to discuss the rampant dismissive mistreatment of women in the medical community), it often feels overwhelming.
Currently, and actually for the last several years, I have felt extremely grateful for the support and endless knowledge and research I’ve received on social media. Many Doctors in the US will not touch MECFS. To sit in front of a doctor practically begging for help, with a ridiculously long list of symptoms (that seem unbelievable even to you), and have them dismiss you, tell you the list makes you “sound crazy” (personal experience), is utterly gut wrenching. But then you come to social media and you find thousands of people just like you, same symptoms, same lack of treatment, and you realize, I’m not alone here, and you simply cannot put a price on that. For some of us, as the people in our lives move on and drift away, social media is an absolute savior. (Fact: If you decide to read the article (linked in bio) from the posted photo…there are over 100 types of herpes virus. Type six is NOT the one you learn about in high school safe ‘relations’ class, that’s two.)
Today’s prompts: Symptoms & Small joys
One of the most challenging aspects of this illness is that it is multi-systemic; the more systems it impacts the more symptoms we have. Long story short, the symptom list is long, the longest I’ve personally seen in any illness.
Each of us have some core symptom similarities, but beyond that the symptoms can vary greatly. As I understand it (please feel free to correct me my brain is mushy these days🙃), per a study released this week we have low mitochondrial activity (low energy production). When your body ‘systems’ aren’t receiving proper energy, they begin to malfunction. Those malfunctions turn into symptoms.
Because we have so many odd symptoms doctors commonly shun us. Many people are literally afraid to tell doctors all their symptoms for fear of what the doctors will say or do. We’re referred to as malingering or sometimes much worse. When was the last time you were afraid to tell a doctor you were sick because of the way they would treat you? That’s our reality at nearly every new patient visit.
It wasn’t until I found an MECFS symptom list online and checked off all my symptoms that I realized I have over 100. To clarify my body is doing over 100 things it was not doing before July of 2014. And it was then that I decided I’m not going to hide it anymore. It’s been rough but I refuse to back down. I’ve had nightmares about the ‘care’ I’ve received, but I refuse to let health care professionals bully me because of their lack of knowledge anymore.
Small joys are in every day. They are my doodles, they are my better days, they are in the compassion here, they are in my morning tea, they are when my son brings me dark chocolate, they are when my partner says let’s get takeout. They are all around me, all the time, and I see them more clearly now than I ever did.
Today’s prompts: Medications/Treatments & Rest
The prompts today are as complimentary to one another as it gets. The only treatment that has helped me with this illness is rest. On a typical day, I spend about 23 hours in bed, resting. (Pro tip: I learned early on that during the day you sit on top of the blankets but at bedtime you get under the covers to signal to your brain it’s bedtime.) Sitting anywhere else, even the couch causes my pain levels to soar.
Medications send me into flares, most supplements too. So, rest has been my most successful treatment option. My experience has been that the more I rest, the closer to baseline (typically the best day a chronically ill person is likely to experience) I get, but the more I rest (since ideally the healthiest body stays in motion) the more my comorbidities (conditions that co-occur along with the primary condition) suffer. It’s a constant balancing act between catering to MECFS and catering to the other illnesses. Ultimately rest wins because when I overdo it and post exertional malaise (worsening of symptoms following even minor physical or mental exertion) kicks in, which leads to a flare, I can barely lift my teacup. And seriously who can live without tea? 😉 Photo: My resting buddies, Lily and Rusty.
Below are a few more of my doodles as I follow along with World Watercolor Group’s daily prompts over on Instagram. Wishing you a peaceful day, which seems hard to come by with all that is going on in the world right now. Stay safe 💕