You don’t know ME. I don’t even want you to see ME. In fact, I try at every chance I can to hide ME from you because I’m embarrassed by ME. I know I shouldn’t be. It’s not within my control; I can’t help it. I think it’s because I know it doesn’t make for the best me. It’s created a water-down exhausted version of me.
What is this mysterious ME I am babbling on about? Myalgic Encephalomyelitis (M.E.) is a multi-system disease that affects the neurological, endocrine, immune, and energy metabolism systems. It affects 17-24 million people globally. Its wrath does not discriminate - it strikes the young and old, women and men, and people of all races, religions, and ethnicity.
I would love to tell you exactly what life is like with ME, however, life with ME can span quite a distance. While even the milder cases of ME are debilitating, people with the more severe cases find themselves mostly homebound or even completely bedbound.
For me it’s been a rotating array of systems, with a few persistent buggers that stick with me day in and day out. For instance, daily I live with sheer exhaustion. Ironically, as exhausted as I am, even if I manage to get a decent night’s sleep, I wake up just as exhausted Memory loss is also a dominate feature of ME for me in addition to a lack of coordination (Accidents really do happen closest to home – i.e. in my home daily!). In addition, swollen lymph nodes, sore throats, and vision loss have all come with ME for me. While these things sound terribly debilitating, I’ve accepted much of it as my new “norm.” It’s when I get sick with a cold that when things really start to go downhill quickly, with symptoms multiplying and additional illnesses adding up.
One of the changes ME brought to my life that affects me daily was the loss of my ability to workout. I know this may sound crazy to some, but I use to love (crave!) working out. Utilizing my mental and physical strength and endurance to summit Mount Kilimanjaro in 2008 was a thrill of a lifetime and I had my sights set on Macchu Picchu in the near future, maybe even hiking part of the Appalachian Trail. These dreams are no longer are a reality. They all came to a crashing (literally) halt once I got ME.
Why? With ME comes PEM. PEM stands for post-exertional malaise. It is a spike in symptoms and a massive energy crash after what, to other people, would be minor exertion. In short, my workouts are gone, my dreams of future climbs and hikes are dashed. They’ve been replaced with gentle yoga on my good days. This is a far stretch from my Beachbody Insanity and T25 hard-core workouts of the past.
I have to admit, giving up working out was one of the hardest losses for me. To me, not working out is like not brushing my teeth before bed. It doesn’t feel right to not do it. It’s like something is missing from my day. I drive by gyms and I yearn to go into them. But I know I can’t. I know if I even tried to work out just a bit that I could find myself in bed for days. So, I don’t go… and the loss remains.
Given how much I worked out you would think this means I am oozing with newfound free time. However, that is far from the case. In my “free” time, most often you will find me laying on my couch watching television if I’m lucky, or just listening to it if I can’t struggle to keep my eyes open for longer than a few seconds. The only exercise I get now is eating. Yes – on a hard day, the act of chewing becomes an exercise that takes energy I don’t always have. Sometimes I skip much-needed meals simply because I can’t muster the energy to literally chew and swallow my food.
This really is just the tip of the ice berg. It would take pages to tell you about the other symptoms of ME, like sound, light and temperature sensitivities, muscle pain and aches, chills, night sweats, digestive issues… In addition, there are other issues that come with it as well. It affects the relationships in your life, there is a lack of awareness and support for it in the medical community, and all the list goes on and on. I think you get the picture though – the quality of life for someone with ME is quite diminished.
However, I would be remiss if I also didn’t say that I am also very proud of myself, despite what ME has done to me. Yes, it’s hurt me, even scarred me, but it hasn’t conquered me. Despite it all, I am still me beneath its reign of terror. I am still kind, loving, intelligent and always looking to see the positives in every situation. Even in ME. It may be hard to believe after reading all this but I have found some positives.
For example, my memory loss is indeed a real kicker! It can be embarrassing and sometimes quite scary in certain situations. However, it also means that I don’t remember the little annoying pieces of every day life. Out of sight, out of mind now!
Being more homebound has really upped my game when it comes to movie knowledge! If it’s on Netflix or Prime, I’ve probably seen it. More seriously though, it has made my home more comfortable as it’s now my safety zone (minus the frequent lack of coordination issues). It’s the place where I can put down my coat of armor and just, well, droop in every way. It takes energy to “go public” these days; at home I can exist in a way that reflects exactly how I am feeling.
Today, tomorrow, and the next day… that is ME and me. Until a cure is found. I thank goodness for organizations like the Open Medicine Foundation (busy researching for a cure and updating us along the way!), Solve ME/CFS Initiative (vigorously supporting scientific research and advocacy!), and #MEAction (an incredible global community of outreach, advocacy, education, and support organization). They are amazing organizations that thankfully are there for us every step of the way. I’m also grateful that many states are now also forming such organizations, including my own state through which I have co-founded the Minnesota ME/CFS Alliance. One of the greatest such strides was made by Jen Brea with her award-winning documentary Unrest that put ME on the map. So, I do see light at the end of the tunnel. The tide is slowly turning. A cure in my lifetime I truly believe is possible.
From me to you….
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