Here is a crash course on the terminology I use to describe my health issues. Unfortunately and sadly, the health issues I have happen to be some of the most highly misunderstood ones with big misconceptions believed about them, which is partly why I started this website.
If you have a suggestion for a “quick terminology” and/or more detailed information about an illness or term that I have not covered here, please leave a comment here or e-mail me at email@example.com.
Invisible illness – There are two types of invisible illnesses: 1) A chronic illness which is not obvious when you see someone yet could be so debilitating that the person is home-bound, bed-bound, and/or wheel-chair bound. These people are told by friends, “But you don’t look sick; you look great,” and they are indeed horribly, terribly sick on the inside. And 2) a chronic illness which you not only cannot see because the person looks normal, but worse, science has not yet created a diagnostic test to “prove” the illness to doubtful people. This latter category is the type of invisible illness you’ll probably hear me talk about more on this blog.
The Spoons Theory (copyrighted) is a way to explain what it’s like to have a chronic illness. If you have not read this yet, it may help you understand chronic illness. It was started by a girl with lupus. People with chronic illness sometimes call themselves “spoonies” because of The Spoons Theory.
M.E./CFIDS/CFS – Myalgic encephalomyelitis/chronic fatigue immune deficiency syndrome is a serious disease. It can be very debilitating ,with many people unable to work, homebound, wheelchair bound, or 100% bedbound. Statistics show that the life expectancy is 20-30 years younger. It is a neuroimmune disorder with extreme, extreme fatigue to the point some people can not even lift a finger as well as cognitive dysfunction, memory issues, and sleep disorder. Some studies have found that people with CFS/M.E. have brain inflammation. Some people with CFS/M.E. cannot tolerate sound, light, or movement and have to keep in a dark quiet room. Celebrities with M.E./CFS include: Author of Seabiscuit and Unbroken, Laura Hillenbrand and Flea from the band Red Hot Chili Peppers.
Dysautonomia – Dysfunction of the autonomic nervous system which controls the basic functions of the body that you do not consciously do like breathing, heart rate, blood pressure, digestion, pupil dilation, fight or flight response, and more. Here is my in-depth description (coming soon).
POTS – Have you ever met someone post heart attack who could not walk across the room anymore without feeling like he/she was going to pass out? That’s how POTS feels, except we actually pass out and have pseudo seizures. Postural orthostatic tachycardia is a form of dysautonomia (see above) and subset of orthostatic intolerance (the inability to tolerate positional changes, such as standing upright from sitting, without the autonomic nervous system going haywire) associated with excessive tachycardia (increased heart rate) on standing……..
- More in depth: POTS patients usually have hypovolemia (low blood volume) and high levels of plasma norepinephrine while standing, reflecting increased sympathetic nervous system activation. As far as blood pressure goes, there is a subset of POTS patients whose blood pressure either does not change or increases upon standing, and there is another subset whose blood pressure dips so low that it can cause seizures or passing out. Personally, I am usually the latter (decreased b.p.) but sometimes I am the former (increased b.p.), and my heart rate occasionally goes into excessive bradycardia but mostly goes “tachy,” as we “POTSies” call it. Due to POTS, I personally have had seizures, parkinsonian-type walking episodes, tachy/brady crises (paramedics called), passed out, and had a couple weeks where I could not even move my hand without seriously heavily huffing and puffing!
Lyme disease – Neuroimmune diseae causes by a vector-borne bacteria found in pathogens such as ticks, mosquitoes, and other insects.
Fibromyalgia – Neuroimmune disease characterized by widespread musculoskeletal pain accompanied by extreme fatigue, sleep disorder, cognitive dysfunction, and memory issues. It can be very debilitating with many people unable to work, homebound, and wheelchair bound. I don’t care what you’ve heard before about fibro, and in fact, I probably rebuke it because it likely was completely untrue and I have spoken to literally thousands of people with fibromyalgia.