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May 01, 2009
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Understood!
by: Anonymous

Dear Harriette,
I'm sitting here after reading your "Chronic...", & I empathize on a few different levels. When I was still able-bodied, I used to be a PCA (personal care assistant) who took care of 2 men with MS. I learned the meaning of courage from one, & bitterness from the other.
I could understand the bitterness of "B.L." - his MS affected him severely. He'd get episodes of nerve pain that he'd describe afterwards as "being on fire inside." He was miserable, of course: He'd been a hard-working family man who was now 100% dependent upon his wife or "strangers" like me to care for his every move.
The other was a much younger man who couldn't be more different from "B.L."; he seemed to get much relief from his pains by making everyone laugh. His disposition was one of sunshine. I'd actually look forward to going to work for him!
"C.T." looked for the best in every person & every situation. He said once, "I'm inflicted, but I don't have to be inflicting!" That was 24 years ago, & I still think of him with admiration & a huge smile!
Now that I'm 54, & have my own ailments that bog me down, I try to use "C.T."'s method of handling it all. But I do understand your frustration with people who judge disability only by the use of a wheelchair. I have Crohn's disease, a (so far) chronic & incurable, but supposedly "treatable" disease. Imagine having the worst stomach flu you've ever had, plus food poisoning, & someone bashing your intestines with a sledgehammer, & you'll get a fairly good idea of what Crohn's is like. But it doesn't "show" like a wheelchair-bound person's disability, & I'm constantly stunned by the lack of compassion exhibited by many people who shoot me dirty looks for parking in the handicapped spaces, even though I have my placard, because I can walk into the store. They can't SEE the knife-like stabbing pains in me, so my ailment(s) are discounted. I've had to learn to ignore them when I can, educate those who'll listen, & cuss out the worst offenders. I suggest you do your best, Harriette, & forget the rest! I'll be praying for your improved strength, both inside AND out! Bless you, Maria

Jan 13, 2009
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I Understand
by: Martha Jette

Hi Harriette:

I totally understand where you're coming from due to the chronic nature of MS. I have Fibromyalgia and it took my family members a long time to realize that there are those good, not-so-good and really bad days. They also had to come to terms with the fact that there are certain things I can no longer do, even on a good day! lol

It's funny when someone asks me how I'm doing. That can change from one hour to the next. However, I just smile and say I'm fine. It's just easier that way and I don't have to get into long explanations.

Having a chronic illness is no fun, that's for sure and I feel for you. I was told Fibromyalgia has good news: it won't put you in a wheelchair. And bad news: it's never going away!

It is important to be patient with those around us because as you know, if someone else doesn't have what we have, it's next to impossible for them to fully understand. The best we can do is realize our own limits and work within them.

Take care,
Martha

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