If you would only explain things better . . .

You may have read, from prior posts, that there are a few persons in my life (not really my choice, believe me) that seem to have an issue with exactly how I've dealt with the MonSter to this point.

These same persons seem to resent that I'm not bedridden and miserable.  They see to believe that, with the MS diagnosis comes abject misery.  I was actually shocked with how offended some persons were that I wasn't one step out of an assisted living facility due to having MS!  I don't know if they're just very uneducated in regard to the MonSter and unwilling to conduct even a smidge of research or if this was a great way to weed out the fake "friends" who didn't need to be a part of my life.

Yes, the following comments have all be said to me . . .



"If you would only explain things better, I could understand your illness . . ."



I'm sorry.  I don't necessarily understand my illness either.  This illness doesn't follow rules.  Just know I can be tired and not want to deal with anything, or I could appear totally normal.  Go to the MS Society website and do some research on your own.  I am not going to spoon feed an adult who should take the initiative to do something on their own.

"I just don't understand . . . you're fine one day and then act tired the next . . . if you were really sick, you would be sick all of the time . . . ."

Well, you see, MS is this weird little problem that doesn't make me get progressively worse (I guess here, I should state that I have RRMS, so it's not one that makes me decline with each incident I have).  Not only does MS not treat everyone the same . . . the little MonSter also says 'Howdy' in different ways to THE SAME PERSON! 

I would LOVE for MS to follow rules.  Seriously.  "You will get tingly hands and feet.  You will then get dizzy spells and have headaches.  You will have fatigue every Monday after pushing yourself to be "normal" on weekends  You will then start to have trouble walking . . . "

But NOOOOOO!  MS, that silly little trickster, comes and goes.  I never know what to expect.  So, if I don't know what to expect how can I share with you?

To add to that above comment, maybe you could read a little bit first instead of posting multiple pics of you and your "besties" out drinking.  I know education wasn't a priority for you, but I still think you were taught how to read. I know, from the excessive amount of time you spend on Facebook, that you know how to play on the internet and should be able to Google "What is MS?".  Heck, I've shared multiple links about MS on my page.  My friends have all read the articles and we've had discussions.  None of those friends have said I should be sick all of the time . . . Should I have put pictures of alcohol and various mixed drinks above the article to make you read them?

"You've really hurt us by not posting about how miserable you're feeling . . ."

Umm . . . . I really don't feel the need to give the MonSter more attention than it deserves.  1.  I don't have the energy.  2  I've always been a pretty private person.  3.  I know you enjoy whining, but I don't.  I enjoy finding the positives in everything when I can.  4.  I'm sorry that misery loves company, but you'll have to look elsewhere, because (though MS can get me down) I'm not miserable.  5.  If you really want to know how I'm doing FOR REAL, call me.  Maybe I really am having a bad day but don't want to bring others in my life down.  My friends reach out to me with phone calls, emails, texts and cards.  They know how I'm doing and their attention has been a great comfort when I am having a bad day.

"By not telling us how really sick you are you're actually lying to us all . . . ."

So, you see, I am one of the very fortunate persons who has been diagnosed with MS.  My getting an MRI was a fluke since we thought I just had an eye infection from a scratch.  From that happening to the spinal tap and MS diagnosis all in 2 months, it's unheard of!  I've never had an ER visit, I have never had emergency calls to my neuro.  I may walk a little slower and have battles with fatigue, but again, I am so, so very lucky and in no way "really sick".