Two unrelated but awesome things

Image by Stephen Rees via Flickr
Edit: Formatting on the quotes got super weird. Trying to fix that:

The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:

Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm

And:

Many of us believe that we've let our family and friends down.

And:

The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?  

Also:

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.

And:

Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.

30 Things About My Invisible Illness You May Not Know

Image via Wikipedia

1. The illness I live with is: Chronic Fatigue Syndrome, Migraine, Undifferentiated Connective Tissue Disease, Functional Movement Disorder, Hashimoto's Thyroidits, Reynaud's Disease, Scoliosis, Depression, possibly Fibromyalgia
2. I was diagnosed with it in the year: 2008-2010
3. But I had symptoms since: the mid 1990s
4. The biggest adjustment I’ve had to make is: Recognizing that pushing myself to work harder or do more is counterproductive.
5. Most people assume: If I just tried harder I could do more. That my fatigue is the same as having missed a few hours of sleep a night.
6. The hardest part about mornings are: Deciding what needs to be done and can be done for the day.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: My cane, with my rubber gloves a close second.
9. The hardest part about nights are: Insomnia, pain so severe that I can't sleep
10. Each day I take __ pills & vitamins. (No comments, please) 14
11. Regarding alternative treatments I: Am cautiously aware of and willing to try some
12. If I had to choose between an invisible illness or visible I would choose: I honestly don't know.
13. Regarding working and career: I enjoy working and I sometimes regret that my chosen career as a field archaeologist in Egypt and Sudan are not really possible right now. I've come to realize though that my own physical and emotional well-being are more important.
14. People would be surprised to know: I still have times I think I'm just not trying hard enough or think I'm just lazy.
15. The hardest thing to accept about my new reality has been: I really can't just push past my limits even for something I really want to do and would enjoy.
16. Something I never thought I could do with my illness that I did was: Drive again. I've been cautiously driving short distances with my husband now that we're no longer in the crazy busy environment of Chicago.
17. The commercials about my illness: Annoy the crap out of me and suggest that medications will be a miraculous cure when it's more likely that they will be an incremental improvement.
18. Something I really miss doing since I was diagnosed is: Riding a bike.
19. It was really hard to have to give up: My career plans.
20. A new hobby I have taken up since my diagnosis is: Spinning with a drop spindle.
21. If I could have one day of feeling normal again I would: Dance
22. My illness has taught me: What is really important in life; that contentment is based on your own desires and needs and not on meeting the expectations of other people.
23. Want to know a secret? One thing people say that gets under my skin is: "oh, I'm tired/hurt too, it's just the weather or allergies."
24. But I love it when people: Try to keep in mind my limitations when planning things or ask for my input instead of assuming I can or can't do something.
25. My favorite motto, scripture, quote that gets me through tough times is: I just have to get through this minute, hour, day.
26. When someone is diagnosed I’d like to tell them: It will be hard. There will be people - friends, doctors, random strangers who disbelieve you or dismiss you. But what you feel is real, your need to be treated is real. You don't have to prove yourself to anyone.
27. Something that has surprised me about living with an illness is: How judgmental some people can be even when the illness has nothing to do with them.
28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me, believe me, help me.
29. I’m involved with Invisible Illness Week because: The way chronic illness, visible and invisible, is regarded in our society needs to change from an expectation that anything can be overcome if you just try hard enough or take the right medication, that accepting one's limitations is regarded by some people as defeat, that people with invisible illness are malingering or overly dramatic.
30. The fact that you read this list makes me feel: Hopeful.