After taking some time away from
writing, mainly due to health issues, I’m back to give it another go. It’s been
an interesting past few months to say the least and of course I get to be the
one to call out the absurdness of what I’ve seen posted lately. I also get a
chance to welcome you to my new normal. Well, some of you are welcome; the rest
can just hop on for the ride.
This past June, I was diagnosed with
Multiple Sclerosis. I told only a handful of people at the time, those were
people I kept in touch with on a regular basis, not what I call “drive by
friends”. At that time I wasn’t ready to deal with it, there were so many
emotions. The first one was just strangeness because Jack Osborne announced he
had MS the day after I was told. Suddenly, the whole world was being made aware
of this complex disease. The next emotion was the “this isn’t real, oh wait,
that explains everything” emotion. How does that work? Well, my doctor was so
nonchalant when he told me so I was nonchalant as well. I figured it couldn’t
be that bad if he wasn’t making a big deal of it. Then I started getting things
in the mail, a whole new dose of my new reality; humbling to say the least.
After over 20 years of weird
happenings and tons of work being missed, I know what I have. I think I was
more relieved to have doctors that actually listened to what I said and not
blow me off as being lazy, or having head issues. I have a head issue alright,
I remember every single doctor that has told me it was nothing, chronic
fatigue, laziness, a virus and any other excuse they used. Memory, now that’s a
heck of a head issue to have! I have to
admit, these doctors had me thinking I had a mental problem for a while and it
really worked on the self esteem. I have to keep in mind they call it a medical
“PRACTICE” for a reason. I was a human guinea pig, not by choice for sure.
I remember being too tired to take
my son trick or treating and forcing myself to go. I remember being too tired
to keep the weekly dinner dates he and I had. I pushed through it all. I
remember lying in bed for weeks, crying because I couldn’t get up on my own. I
didn’t know the frequent arguments my mom instigated put me in bed for days
with possible MS related flare ups. Looking back, all the signs were there but
nobody put it all together. It’s ok now, sort of. My son didn’t know any
different, the only thing he’s known his whole life is that’s it’s me and him
against the world and we will win.
I guess I didn’t really say anything
because I didn’t to hear the obligatory “I’m sorry”, “I’ll pray for you” and
the other automated responses people give. This is why people are negligent in outing
their sickness. Honestly why are people so obsessed with the how’s and why’s of
someone else’s life? A person passes away and right away you have a crap load
of people wanting to know what happened; why??? You think you can fix them and
bring them back? A person announces an illness and right away people are asking
if you got a second opinion and telling you their homespun advice. There should
be a protocol of what to say or not say, better yet just don’t say.
Once I was ready to start putting MS
out there, I posted pictures on my Facebook page. Now…wait for it…. Would you
believe people were asking if something was wrong with me or am I sick!!!
Really people???? First of all, there is nothing “wrong” with me. I’m not going
to start posting articles about healthy eating for people with MS or anything
like that. Knowledge is power and if some of you dare to pick up reading
material, you will read that no two people share the same symptoms and those of
us that have MS are in a group of highly diversified individuals unique only to
ourselves. Once people start finding out you have “something”, people you haven’t
been in touch with start writing trying to find out the “scoop”. There’s no
scoop to tell so the pretend to care just to get information can take a flying
leap. Overall, I thought the pictures said it all, didn’t think I would have to
explain the obvious.
I believe one of the main reasons I’ve
waited to put this information out there is because no matter what you say,
someone says they have it worse. Only on Facebook can one try to one up someone
when it comes to illnesses or a family crisis. Think about it and look through
your pages. If someone says they aren’t feeling well, there will undoubtedly be
someone else saying “I was sick all last week too, feel better soon” My
favorite is when someone always says “I have a friend that had (enter anything
here)” Wow, I don’t think I asked about your friend, at least that’s what I
would like to say sometimes. I’m not one to blast ALL of my business on
Facebook anyway. Do you really care when I went to the bathroom or what I ate
for dinner? So, I choose carefully what I post; unless something pisses me off.
I’ve started cleaning my closet so
to speak. I keep in touch with those I actually want to talk with. I’ve walked
away from someone that was my best friend for almost 30 years. I’ve changed a
lot, but there’s more changes coming. I may slur my words when I talk now and I’m
certainly no stranger to kissing a wall or two or hugging the floor. It isn’t
my fault they get in my way. I have brief memory farts and sometimes ask the
same question a hundred times. My vision gets blurry and returns to normal, I
walk funny sometimes. Being on my feet for an extended period of time sends my
body into spasm of pain and tingling. Sometimes my left leg is completely numb
and I have to drag it along like a sack of some type. My face goes numb quite
often and it seems stress brings a nice little flare up to remind me to calm
down. There are times when depression seems to be the only thing I wake up to
and I have to have meds to sleep at night. I have a cane that I’m too vain to
use, but I’ve already decided I will name it Candy. There’s nothing “wrong”
with me, the pictures or sayings about MS I post are about me. I’m learning to
embrace my new normal. ~Just my two cents
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