Skip to main content

Fighting for Last


Funny, there's no "self help" book for chronic conditions.

Hell, we could all probably write a very different book with what we discovered on our own that helped us.

The first time my doctor said "chronic" I didn't understand it.

I understand it now, but I wish I didn't.

But with chronic, there's a lot of other things that don't get explained when we're presented with that diagnosis.

No one told me that I'd spend the rest of my life not just fighting for my life, but fighting to simply be last.

That checkmark on the disabled box, puts me last.

That letter I hand my professors explaining the accommodations they have to adhere to, puts me last.

And so... the list goes on.

It doesn't matter if I get straight A's or if I'm top performer at work, I still will never show up everyday.

I'll never have a perfect month where I didn't have to leave early, or spend half of my day getting sick hiding out in the bathroom.

I'll never not have to explain some medical contingency or surprise hospitalizations.

I'll never have a good track record. One month, my refill request doesn't get processed correctly. The next, I'm not responding well to a new treatment. The next the seasons are changing so the weather has me out for the count. God forbid I get a sinus infection. Or get upset. Can't cry or I'm done for 2 days,

There's this really ugly side that goes a lot further than talking about what migraine is and educating everyone and anyone.

Its the side that grows really slowly. Its that side that pushes on the depression that is common alongside chronic conditions. Its those dark thoughts in the back of your mind that usually stay buried, but some days they just won't go away.

Its these little parts of life that I physically can no longer picture.

Yeah, I've got a savings account. Yeah, I contribute to my 401K.

But like, retirement?

Being old?

40 years from now, I'll be 60.

I see posts all the time about people who talk about having migraines for over 40 years.

I can't actually spending an entire lifetime in this pain.

I know I will, but a life like this? There really isn't much to picture.

Who knows, menopause may be a godsend and I'll never have pain after that.

I won't even get into how screwed my body will be from all these treatments...

And then I open Facebook. 2 more people are pregnant and another is engaged and others are celebrating anniversaries and taking fancy vacations.

No, I don't want kids. Never have. Couldn't imagine bringing one into this world and definitely wouldn't want to pass this condition down.

It would be nice to be able to picture settling down one day with someone I loved.

But, now that guy would have to not want kids.

And he'd be signing up for a lifetime of being a caregiver.

How do you put that burden onto someone? You don't.

And its not like guys hang out in doctors office's or therapy places trying to pick up a date.

I can't even go on a date.

I have a hard enough time agreeing to dinner with the few friends I have left.

You see. Its just this endless spiraling cycle.

It goes past the pain.

That's all there is to it.

Some days its just bleak.

Some days it doesn't make sense.

It may feels like I got handed the short end of the stick, but the stick packs a punch nonetheless.

So here's to fighting to just come in last.

A.

Comments

Popular posts from this blog

I Know I Look Fine

Let's all take a moment to be very honest with ourselves. If we looked the way we felt 99% of the time none of us would look all too great. This isn't something that is specific to my condition. This is something anyone can deal with. Got arthritis? Got a UTI? Getting over a cold? No one is going to proudly display the dark circles under their eyes, and lots of makeup companies have perfected concealer to hide just that. But I'll put up with your looks. Your confused faces. Your attempted sympathetic "well I hope you feel better" as I rush away from work. Why? Because there's no way you can ever SEE the pain and the symptoms I'm experiencing. Sure my pupil is literally taking over the entire blue part of my eye... but hey I'm probably just stoned or something. I don't know how you'd be able to see that my body is saying hey if you don't get into a dark room right now, lay down, and try and consume some food I'm goin...

You See What I Show

You see my hair done. You see my makeup. You see my blemish free skin. You see a healthy glow. You don't recognize the tired, strained look in my eyes, because you've never been exposed to a truly "healthy" version of me. Forgive me for putting on the show. Forgive me for pretending that everything is fine. Forgive me for not looking sick. Forgive my negative outlook. Why? Because you don't get to see what this condition is. You don't see that I haven't slept in days. You don't see the bruises lining my legs because the heat has caused a rash on my skin. I understand that its a hard thing to wrap your head around. I mean I get it. I stood at work with a pain level 9. And as I walked around the store, it felt like someone was pushing from the inside of my skull down onto my eyelids. I had to forcibly hold back tears because the pain was so intense. I'd accidentally wander into an area where the sunlight was bouncing off of s...

It Hurts

To say I feel less than human, is probably a bit of an understatement. But I do. I've been home for a week. I've managed to pretty much lay in bed in agonizing pain the whole time. I had a half-assed attempt to see a friend that resulted in me rushing home as the nausea and aphasia set in. I successfully made it to massage therapy today. Which meant even after sleeping for roughly 2 hours, I got up at 7:30 and sat in traffic for hours to get to a less than expected appointment. Mind you, my previous massage therapist was so wonderful I'm most likely spoiled to other techniques. This lady was late, she sat in the same god awful traffic I did. We spent more time going over the woes of her morning, than we did discussing why I was there and what I hoped to achieve through various massage techniques. The massage room wasn't dimly lit, and even as the massage started, lights were still on. I found this odd, but decided to just keep my eyes closed. Then she started ...