I'm Not Tired: International CFS/SEID/ME Awareness Day
May 12th is International Systemic Exertion Intolerance Disease/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis awareness day! In addition to that mouthful, today is also the awareness day for Fibromyalgia and Multiple Chemical Sensitivity, similar invisible illnesses that often coexist with SEID.
Today, I will explain what SEID is. Until this past winter, the disease went by the name Chronic Fatigue Syndrome. In Europe, the more familiar name is Myalgic Encephalomyelitis, which means an inflammation of the brain and spinal cord. However, some ME advocates believe that ME patients only make up a subset of CFS/SEID patients, and that ME patients usually constitute the most severely ill CFS/SEID patients. Roughly 25% of patients have "mild" cases of SEID and can hold down a full-time job but have no energy left for life outside work, 50% have "moderate" cases and work part-time (the category Michelle and I fall into), and 25% have severe cases and are housebound or bedbound, unable to care for themselves at all.
I am not "tired" all the time. In the United States, there has always been a huge confusion of the terms "Tiredness," "Chronic Fatigue," and "Chronic Fatigue Syndrome." Feeling tired from lack of sleep or working too hard is an entirely different symptom from SEID fatigue. My sickness first got my attention when I suddenly felt lightheaded several times in one week. A couple days later, I was going through my school day, but in the afternoon, I started experiencing what would eventually become a "normal" feeling: I felt as if all the cells in my body stopped producing energy at the same time, leaving me feeling paralyzed, while at the same time, I had a sensation as if someone had dropped a cement wall on top of me. I didn't have a name for this new feeling, so I blamed it on my allergies and told my teacher I was lightheaded to get out of rehearsal, since I didn't have the energy to sit on the piano bench. What I had experienced for the first time, though, was what is often called the bone-crushing fatigue of SEID.
Fatigue does not equal SEID/CFS. It's just a symptom. Systemic Exertion Intolerance Disease is more complicated than being fatigued all the time. Patients who experience chronic fatigue without the other hallmark symptoms of SEID just have...drumroll...chronic fatigue (as in, fatigue, NOT the syndrome). SEID/CFS means (surprise, surprise!) that patients are intolerant to any kind of exertion, including physical, like exercise (or sometimes simple tasks like brushing one's teeth), mental, such as schoolwork, or emotional, as in anything exciting. If a patient overdoes it in any category, it can cause increased physical, mental, and emotional symptoms. Basically, we avoid anything that raises our heart rates to limit post-exertional symptoms as much as possible.
What else is there? In addition to physical fatigue, the core SEID symptoms include substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertion malaise lasting more than 24 hours. Other common symptoms include irritability, mood swings, low blood pressure and intolerance to standing, digestive issues, and many more.
What can I do? First, if you know anyone with SEID or a similar illness like Fibromyalgia, MS, Lupus, or Lyme, understand that when you ask your friend how he is and he responds by saying he's "good, just a bit tired this week," he usually means he's experiencing bone-crushing fatigue and pain, brain fog, and irritability, while trying to appear and act "normal." We patients are doing everything we can to take care of ourselves and stay on top of research pertaining to SEID; we usually don't need others to fix us or tell us to rest, we just need others to 1) be compassionate and acknowledge how hard we're fighting every day for things healthy people take for granted, and 2) remember that we don't get over SEID the way a healthy person heals from a broken leg or the flu. Needs of people with chronic conditions don't go away. When I am struggling, sometimes one of my wonderful sisters will drive to the store with me so I don't spend energy driving or chop the meat and vegetables so I don't have to stand an extra few minutes in the kitchen cooking a healthy meal for myself. I'm blessed with an awesome family that can sometimes pick up the slack, but many people with SEID aren't, and we need to be aware of the ongoing needs of people with invisible illness.
Finally, if you want to get directly involved with the research for a cure and/or raising awareness and/or learning more about SEID/CFS/ME, visit the Solve CFS Initiative at www.solvecfs.org.
Thank you for reading and caring! Please share this and think about how you can help those around you and possibly get involved with the Solve CFS Initiative!
Lizzie
