Category Archives: PMR

No More Mr Nice Guy!

“I am sick.”

batman

“You know I’m sick.” 

“You’ve heard what the doctors and Google have to say.”  

“Remember?  Do you remember that I have a disease… an autoimmune disease?”

“No, it’s not cancer.  It’s not a heart attack.  I’m not dying… but I am sick!”  

“I can’t help but feel utterly exhausted, overwhelmed, out of sorts, dizzy, achy, off, cranky, and just plain not right.”

“Corticosteroids…  remember, we talked about what they do and how they affect people?”

“I don’t feel like ME!  Do you understand that?”  

“Going out…  going out anywhere, to do most anything… is stressful at best and I find it  quite mind-boggling! It freaks me out and causes me anxiety.” 

“So please…  can you please explain to me…  why…. if you love me, if you’re my friend… why you insist on dragging me around and parading me through endless hours of non-stop activity?” 

“Seriously!  WTF?” 

This is the pseudo conversation that goes on in my head, when a fellow PMR/GCA sufferer mentions that s/he was coerced or bullied into an outing or family gathering that they either did not want to go to, or were trapped into staying at, much longer than they ever intended to stay!

This must stop.  We must become better advocates, for ourselves!

We must be more comfortable standing up for ourselves and in telling our loved ones and friends what we want and need, when we want and need it!

We must stop internally (and externally!) apologising for being sick!

We didn’t ask for this!  We didn’t choose to have our lives turned up side down by this bullshit!  It was thrust upon us… like cancer, like Alzheimer’s, like schizophrenia… or any of the countless other debilitating diseases that strike people down in the prime of their lives!

I’ve never heard a cancer patient apologise for being tired or for having cancer!  And I’ve spent a lot of time around cancer patients!

Are we secretly embarrassed or ashamed by the fact that we’re sick?

Are we pushing ourselves in a futile attempt to “appear” normal?

Why are we allowing ourselves to be victims to the wants and needs of our friends and family at the expense of our own wellbeing?

Well, I say, “No more Mr Nice Guy!”

It’s time for us to be vigilant and listen more carefully to our negative (and often un-constructive) “self talk.”  And… it’s time that we changed that dialog!

No more thinking to ourselves; “Oh, I guess I should make an effort for Johnny… he’s so good to me.”  “I don’t really feel well, but I didn’t go last time, so…”  “I guess I could stay just a little longer…”  

Having a weird, obscure, freaky disease should not make us feel “less than,” or  inadequate.

We do not have to “make up” for any wrongly perceived imperfection or deficiency.

We are just as “good,” as all those healthy people!

Who are we trying to impress, anyway…  them, or ourselves?

Are we subconsciously trying to get our “old” selves back?  Do we think that by pretending to be normal, or stronger than we are, or more capable, that we can somehow resurrect that healthy, vivacious, fun, person that we used to be?

Well, we can’t!

Please know that s/he is gone!  That person no longer exists!  Hopefully we’ll meet them again one day (or at least an older, wiser, version of them), but for now, they’re gone.

Mort.

Why do we allow ourselves to be swayed by the wants and needs of others, when we know it is not in our best interest and it negatively impacts our health and wellbeing?

I’m not freakin Sigmund Freud, I have no answers…  but the questions still stands.

 

“Whatever games are played with us, we must play no games with ourselves.”

~Ralph Waldo Emerson

 

 

Advertisements

Dear Anonymous…

fuck you

 Is that “magnificent” enough for you?

You recently left feedback on my blog site that said:

“Hey, you used to write magnificent, but the last few posts have been kinda boring?  I miss your tremendous writings. Past few posts are just a bit out of track! come on!” 

“Fair enough,” I thought!

The feedback was much appreciated and I actually went back to you, straight away, asking specific questions; trying to get a better idea of what you thought had changed and how I might turn things around.

Was it the subject matter? 

Was it the fact that I may have lost some of my anger?

Which posts did you think were really good, verses which ones not so good? 

You made your penetrating observation on April 14th at 7:25 am; I responded on April 14th at 7:27 am.  I’m thinking, you were probably still on-line when I responded!  It’s now April 16th and still nothing from you…  Is that really all I’m going to get?

No additional words of wisdom? No tried and true blueprint for “How to be a Better  Writer,” or cunning tricks of the trade, teaching me how to “Grab Your Reader?” 

Well, you’ve let me down.

And by the way… what’s with the “Anonymous” anyway?  Did you have to change your User Name or create a whole new profile, just to leave that feedback for me, or are you always Anonymous? 

Does using that label allow you the anonymity you need and give you the balls to say what you think, without really putting yourself out there?  Does it provide just the right amount of refuge, so that you feel empowered to speak your mind, but not vulnerable and exposed to any comeback you might receive?

Look… I really do apologise that you have found my blog posts “boring,” of late.  It may have something to do with the fact that my life is fucking boring! 

Think about it…

I go nowhere.

I do nothing.

I see no one.  

Not sure how much you know about what having a chronic illness is like… but I gotta tell ya, it’s not fun, interesting or entertaining in any way.  You don’t get to turn it on and off, at will.  You don’t get to control the extent to which you will or will not be impacted by it.

It “controls” you.

It violently seizes you, by the back of the head, pushes you to your knees and tells you to get on with it…  You don’t get to bargain or negotiate.

It tells you when, it tells you where and it tells you for how long.

You just submit.

So yeah, I guess if a few of my posts were “… just a bit out of track,”  I may have been a little preoccupied getting fucked by one of my two, chronic, auto-immune illnesses.  Or perhaps it was from the vile side effects caused by the toxic corticosteroids I’m taking; or the obscene withdrawal symptoms I experience, every time I reduce my dosage. 

Oh… and just so you know, I don’t write for anyone but myself!

I write to get all the anger, fear and resentment out of my head, so that I don’t end up imploding!  If you read it and like it, I’m happy with that.  If you read it and you don’t like it; well, I’m sorry my words didn’t resonate with you.  Maybe next time.

I will suggest to you that if you want to give someone “constructive” feedback, you might want to follow through.  Providing vague, half-assed, glib gibberish is not helpful.  It’s a waste of your time and it’s a waste of my time.

You want me to “…come on,” well give me something I can sink my teeth into.

You know magnificent?”  

You miss “tremendous?” 

Then, please, by all means, point the way…