So, after spending Tuesday and Wednesday in a huge amount of pain that kept me from being able to walk, I awoke this morning to extreme muscle weakness. There's nothing quite like starting out the day having to be picked up off the bathroom floor.
It's frustrating to have something as simple as not being able to keep upright from work yet again. And while I know that my boss understands...and encourages me to take care of myself...life with an invisible illness has made me well aware of how I'm viewed when I take a sick day. It's the "...but you don't look sick" issue.
Since this is my first post on here, allow me to explain what I experience based on what people see vs what I experience internally.
Externally, people see me as an overweight 31 year old who shows no pain, speaks articulately, is organized, capable, intelligent, and with a quick sense of humor.
Internally, I always experience some level of pain body wide from aches to shooting pains down my legs and/or arms. I deal with a whole host of digestive issues. I'm usually fatigued beyond belief. Cognitively, if I don't stay organized, I tend to misplace things (like the phone in the freezer or the remote in my sock drawer.) I lose words regularly; I frequently feel like an intelligent woman trapped in a bumbling idiot's body. I'm chronically hypoglycemic (low blood sugar), which is complicated by no appetite, and I frequently fight the fight of not eating enough calories. (Contrary to popular belief, not all overweight individuals are overweight because they eat too much.) I deal with depression and anxiety regularly.
But within this, I've accomplished a lot. I enjoy yoga and nature and hiking. I love my new Wii. I try to eat healthy. I've learned to ask for help with the housekeeping and have an awesome person who helps with that. I'm a photographer, and love being out with my camera. I have a wonderful husband, a supportive and wonderful group of friends, and a family that anyone would be lucky to have.
In the 17 years that I've dealt with this, I've been very vocal about having it. I want to educate and support. So many people are suffering and don't know why, and I think every person who's had this diagnosis (or Lupus, Chronic Fatigue, MS, or any other invisible/autoimmune condition) have had the experience of being treated inappropriately by doctors, being looked down upon by medical professionals and co-workers, and feeling unheard.
So, I will be venting, laughing, crying, educating, and hopefully offering support.
Take care everyone,
Tiff
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As much as I hate this disease and would never wish it even on my worst enemy, I however am grateful that there are others who understand what I'm going through. Perhaps we can all hold each other up!
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