Tuesday, September 29, 2009

It's like vomitting.

(As in, maybe once it's all out, I'll feel better.)

Another thing I hate about MS? There are oh-so-many, including the fact that my thoughts and emotions no longer seem to be under my own control, but one particularly galling aspect? I look like I am fine.

Most days, I manage to drag myself out bed, get dressed in something reasonably well put together, make it to work, and then work on making it through work. I'm weak, but most days still have enough energy to function. I'm dazed and confused, but usually able to string a few coherent thoughts together. I'm achey and tired, but I just keep pushing through it. I twitch, but it usually goes unnoticed.

Sometimes though, I can't maintain that front of being fine all the time.

Today was one of those days.

I am really starting to resent those days.

Today, at lunch with my coworkers, I was withdrawn and, unfortuantely, short when spoken to. I was just trying to keep my shit together, so I was sort of lost in my own world. But instead of concern, sympathy, or understanding, I was misunderstood.

"Are you pissed off?"

I hate that. Yes, some days I am angry. Somedays I'm angry about work and somedays I am angry about MS. But somedays I am sad. Or tired. Or confused. Or twitchy.

(there seem to be a lot of those days recently.)

And somedays, I just want a little sympathy. Or a hug. Or an understanding pat on the back. Or even just a look that says "hang in there".

But even when I explain that, no, I'm not mad, I'm just not feeling well and have a lot on my mind, it doesn't really make up for my behavior, does it? In the social/working world, it doesn't fix things. It doesn't excuse it. The misunderstanding is already out there. And I don't have the energy to fix it.

So what's a girl to do?

I'll tell you what this girl is going to do. I'm going to withdraw. Find a safe harbor. Wait for the storm to pass. And if I wait alone, then so be it. It's just a job anyway. I'll continue to put myself together, make it to work, and work on making it through.


Even on the days I look fine. Which are most.

But I will have to avoid any sort of interaction that would reveal otherwise. Because people prefer to not have to deal with sick people. Or sad people. Or people that twitch.

(and can you blame them really?)

Because I don't walk with a limp, or have a sign that says, "be nice to me, I have MS and today's not a good day", I will have to add "working to avoid misunderstanding" to my list of things to work on each day. Which likely just means I am just going to have to avoid being around people somedays. Because I don't have energy to fake it all the time. This is why I told my coworkers about my diagnosis in the first place. I hoped for a little understanding on bad days - without having to constantly explain myself.

Guess I will have to anyway.

Or make a sign.


This sucks.

I am sick!

So the doctor's office called back this afternoon. He's going to need to see me before he can consider adjusting my meds.


The earliest they can schedule me is in two weeks.

Um, seriously?

Two weeks?? You might as well tell me two months. Or two years.

Two weeks is too long.

Do you have any idea how much damage I can do in two weeks? Damage to my reputation at work? Damage to my relationships? Damage to my own well being?

Answer: Way. Too. Much.

(as an aside to anyone who may be worrying too much right now - I don't mean any actual physical damage to myself... well, short of what damage I might do to my liver by drinking too heavily and the pounds I would gain from eating too much.... but I don't mean any actual physical harm. If I did, I would be checking myself in somewhere, not calling my PCP. I know enough to know that. But don't think I haven't thought of it... checking myself in that is, not harming myself. The idea of a padded room seems great some days.)

((I'm only half kidding.))

(((about the padded room, that is.)))

So no, two weeks will not work. Try again.

One week.


Again, seriously? Do you think I can't do ample damage in one week? Don't try me, cause I know I can.

With a sigh, the receptionist says to me, "well, I shouldn't do this, but, I can put it in as a sick visit and he will see you this friday morning."

It's all I can do to not scream at her: "I am sick! I can't stop crying. I can't sleep. I can't think straight. I can't function at work. I can hardly get out of bed! I ache all over. I HAVE FREAKING MS! And right now? Right now MS is making me it's bitch. It's toying with my brain in a way I am NOT equipped to deal with. So if it makes you feel any better? I will fake a cough and lie about having a fever, but for the love of god, I am sick! What more do I need to say?!?!?"

But instead, I say, "Thank you, I appreciate you doing that."

So now instead of two weeks, it will be two days.

Two. Long. Days.

Someone wake me when this is over, okay?

God grant me the apathy I need to not hurt these people.

Some days I wish for apathy. Let’s be honest, serenity is a lot harder to come by - I would be content with the peace of apathy.

How does one define apathy? A quick google definition search turned up numerous results.

(god bless those people at google.)

The one I liked the best was this: Void of feeling; not susceptible of deep emotion; passionless; indifferent.

One I liked, but didn’t like, was this: Complete lack of emotion or motivation about a person, activity, or object; depression; lack of interest or enthusiasm; disinterest.

One I took offense to: A symptom of several mental illnesses, apathy is a lack of emotion or interest in things one would ordinarily consider important.

(mental illness you say? screw you google-search-people.)

One that made me smile: Who gives a shit?

I would argue that being apathetic and being depressed are two different things. I am depressed. It generally makes me sad, sometimes angry, and prone to inopportune fits of crying. None of those states is a lack of emotion, by far. I want to be apathetic. What I am after is a little less emotion. Like, a few moments of none at all would be fine to offset the months of over-the-top emotions I have been feeling.

It would be bliss at this point.

None of my over-the-top emotions ever swing to the end of the spectrum where rainbows and butterflies reside.

In separate, but clearly related news, I have a call in to my doctor to reevaluate my current medications.

I hope he calls soon.

Tuesday, September 22, 2009

Things that matter.... and things that don't.

Finding out you’re ill puts many things in perspective. Or, I should say, it changes your perspective. Sometimes that’s a good thing. Other times it’s not.

For me, finding out I am sick - and I had to stop myself from using the phrase “something’s wrong with me” because the connotation there isn’t as nice, is it? - really threw many things into black and white for me. And I am a grey person. I live in the grey. I thrive on the grey. But now? Some things are very black and white to me.

Some things matter. And some do not.

I am surprised and saddened to find that some things that I would have considered important to me at one time now, largely, are not. In light of larger issues... larger concerns... and, quite frankly, extremely larger stressors, some things just do not matter.

Let me be clear.

I really do not give a fuck.

I have a very low tolerance for bullshit. Pointless small talk is no longer welcome around here. Put up or shut up, as it were. And then please, get the fuck out of my way.

Because of what I do for a living, I am required to be very giving of myself - very nurturing, empathetic, and kind. I have it within me to be all those things - and enjoy doing so. But because I spend so much of my energy on that process, it leaves me less energy to apply those same qualities to those around me. And the people who are going to get what I have left? Are those who are giving it back to me.

Those who don’t? They no longer matter either.

I had never considered myself a “needy” person. Not in affirmation, support, or assistance. I have never really thought about it much, it just seemed to be my nature.

That has changed for me now too. For better or for worse - and I am nowhere near clear on which it is - this is who I am now.

I need help. I need support. I need some encouragement. I need relationships that nurture me.

For all the people I have nurtured, helped, supported, encouraged, I am sad to see how few were actually giving it back. Not that it was ever a requirement - clearly I chose to surround myself with these people - but seriously? Is this the best they’ve got to give?

Well it’s not enough.

And though it hurts, it also doesn’t matter. I clearly do not have the energy to effect change here. Nor do I want to, quite frankly. The payout has not proven to be worth the effort.

I am tired. All. The. Time.

And I am done.

As an aside to this? I love and appreciate my family and friends and coworkers that have been there for me. Those that have been nurturing and caring and supportive of me. I know it’s not easy. I know I’m not always easy. It’s not always easy to know what I may want or need at any given moment - but thank you for continuing to try.

I don’t say thank you enough.

But please know, what little energy I have left at the end of the day? It’s yours when you need it.