I DID spend most of the entire day lying about and RESTING, which has probably done my body more good than fancy schmancy pills or the green tea I've been sucking down. I had a somewhat peculiar conversation moment with a friend during the afternoon that left me feeling...I don't know..."odd" I guess. The conversation was about my particular *brand* of MS. I was told rather innocently, "I've known a few people with MS before and you have the worst symptoms I've ever heard of". I wasn't sure if I should feel angry, honored, or guilty! Jury is still out on this one...
It IS funny to me though, how we with MS get lumped into categories of symptoms...even sometimes by those of us ALSO diagnosed with MS. What I know to be true for me is, I only know MY MS, not yours. We may have some similarities and most likely many differences...but your experience is yours and mine is mine and I can only speak from my experience. And likewise to that of a seemingly "healthy and normal" person!
It does bother me a great deal at times, however, feeling like I have to "justify" my symptoms or experience to the "normal" people of the world (and, sometimes on rare occasions, to the MS-self righteous). Sometimes I feel a need to carry around my portfolio of MRI's and point out the large lesion in my cervical spine and the multi-lesions in my brain while diagramming how the central nervous system works (or doesn't with MS)...or perhaps overlaying one of my first MRI's to more recent ones and play a little game called, "counting the aggressive lesion formations since day one diagnosis". LOL
But then I reign myself in and accept the fact "most" people are simply speaking to me from their own sense of helplessness or fear about my condition...God knows I speak from this place all the time! And I try to think how might I be feeling if I were wearing their shoes? If I were the one watching my friend decline in health at what is seemingly an aggressive and rapid pace? When I can put myself there, I quickly lose any anger or guilt and I feel only compassion...for the "normal" person and for myself. We ARE just all trying to get by...
So, off to bed I go...I'm hoping the sleep fairies will touch my forehead and bring me pleasant dreams...and I will awaken in the morning feeling refreshed and revitalized. There's always tomorrow...
12 comments:
Baby steps to feeling better is always better than nothing! Back at work now & feeling rather good with all the moving behind, now if my new bed arrives tomorrow I'll be "perfect" - lol
Sleep fairies... wouldn't you just LOVE to capture that Ambien (?) butterfly and chain it to your bed? Who cares if everyone else sleeps or not? LOL!
Glad you're in a better emotional place today. Yesterday you seemed more depressed than normal.
Hugs!
Peej
Amen sister! I feel the same way you do when people make comments about "people they know with MS". I know they mean well but it doesn't always come out that way, so I just accept it, like you, because it's hard for most people to put into words what they really want to say about someone with an illness.
And here I though you were going to post about being bubbly!
Where DO you get these pictures?
Last Friday, I told my boss that I really have to reduce my hours to 30/week due to fatigue. He told me to drink a pepsi to get some pep.
Today (Monday) I gave him a book on Fatigue in Multiple Sclerosis and explained that I have used up all of my sick leave and a lot of vacation these last two years under FMLA just so that I can run errands, and I'm tired of using my vacation to go grocery shopping. He takes major vacations every few months, so he was able to understand that.
But all weekend I was trying to JUSTIFY my symptoms. Trying to figure it all out. That takes a lot of energy.
Hi Peej - Ref the Ambien Butterfly:
Just to share some trivia: It's actually Lunesta's Luna Moth, a moth that's rare to see because they only fly at night and live one week.
Is it obvious that Lunesta is one of my favorite meds? Maybe 'cause a good night's sleep is very rare for me, just like that pretty moth? Good lord, I'm becoming a drug spokesperson! Maybe I can get some free pills...
SARA:
And what ABOUT BOB?!? (the baby steps thing? the movie?...never mind!)
Hmmmm...a new bed for the lass? Here's to hoping it's no less than a full sized and perhaps even a king!
LD
PEEJ:
More depressed than normal?!? Dear God...LOL
LD
MISS CHRIS:
I've actually encountered very few people, when asked to clarify what they REALLY mean to say, EVER mean any harm...words are just words...yet they can sting and wound deeply if allowed to do so.
LD
MDMHVONPA:
Geez...you KNOW me better than that! Bubbly...grumble, grumble...LOL
LD
JOAN:
GOOD FOR YOU!!! Way to go to bat for yourself...I often learn the hard way that I am my own best advocate if I just prepare myself for the challenge. Sounds like you pulled that off wonderfully for yourself...**pat, pat on the back**
(The pictures? I just steal them off the "INNERNET" like any other thief!)
LD
it's a double, can't afford much more than that, but slept on it last night & it was FAB!!!!
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