Invisible Disease Friday

I really needed a day off.

As each day went on, I had been getting more and more worn out, more and more unable to get up when laying down, more and more exhausted. So a couple of days ago, I decided that since one class was done and the other two were doing finals reviews, I was going to take today off, sleep in, be a lazy bum and not take care of anyone but myself.

Instead, I got stuck carrying the baby down the full flight of stairs that lead to my front door to take her to daycare so I could have a day alone. I got stuck going to campus and taking care of some missing equipment out of my drawer in chem lab. And out of the goodness of my heart I made a lunch run for Lord Imp, who is feeling crappy and I knew was going to need to eat.

And now all I want to do is cry. Because I don’t get to take care of myself and only myself.

All I wanted was 36 hours of not doing anything – not getting out of bed, not cooking, not cleaning, not doing homework and not taking the baby. Instead, I got out of bed at 7:30, struggled down the stairs, took care of the baby for a bit, took a nap, woke up and struggled up and down the stairs several times, struggled to get the baby changed and dressed, struggled to get her in the car seat and prayed as I teetered precariously down the stairs carrying her to the car. In the middle of all that, I had to deal with listening to Lord Imp bitching about how tired he was and how he didn’t feel well.

I really wanted to scream this, but didn’t. So I’m going to scream it here:

WELCOME TO MY WORLD.

I am tired ALL THE TIME. It is not uncommon for me to wake up and legitimately wonder if I have the physical capability of getting out of bed. It is not uncommon for me to not be able to move without an exceeding amount of effort. It is not uncommon for me to fall asleep in classes or want to take naps.

BUT I STILL GET STUFF DONE, and with minimal complaining.

I still do laundry. I still do dishes. I still make the baby breakfast and get her dressed. I still vacuum. I still go to class. I still study. I still do research. I still go to work.

EVERY SINGLE DAY. Despite feeling the same way you are (minus the congestion). My head is ALWAYS foggy. I am ALWAYS tired. And I am ALWAYS woozy.

BUT I STILL GO ON.

Don’t EVER mistake the fact that I am still plugging on without complaint as that I am fine. I AM NOT FINE. I am only moving because my options are to keep going or to die.

And I would kinda like to keep going.

The sad truth is, I’ve been taking spoons from the next day for a while now. And today I woke up with very few of them. And instead of trying to regain my spoon count, I spent today spending them.

I sent a copy of the Spoon Theory to Lord Imp. I hope he finally gets it.

</rant>

No, I’m Really Not All Right, But Thank You For Asking

Lately, I have been finding myself in somewhat of a predicament of a social nature. A common question in our society is to ask “how are you doing?” Of course, whenever someone asks me that, I respond with “I’m fine,” or the more cheeky “well, I’m upright…” On the one hand, it has made it so that people don’t worry about me. However, it has also made it so that people don’t really realise that I am not well at all. On Facebook, you frequently see something like this talking about invisible diseases:

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From sodahead.com

I do think that this explains it all right, but it fails to mention that it’s not just difficult to explain to someone what living with an invisible illness is, it’s downright impossible. My boss, unfortunately, didn’t quite get the memo when I called in the day after my first IVIG because I felt like I had been hit by a Mack truck. “I really need you to come in, do you think it might be at all possible?” Buddy, you try getting 25 grams of pure protein in the form of blood products pumped into your veins and let me know how you feel afterwards. It doesn’t help that I had knee problems going into it. I couldn’t even drive myself home, and I went home and slept. As a matter of fact, I slept all through the day I was supposed to work. I really didn’t feel too hot afterwards.

As a matter of fact, it didn’t occur to him that this is a real serious issue until I told him that I can’t work Tuesday evening because I have a pulmonary function test and CT scan starting at 3 in the afternoon. He made a joke about double-checking that my brain was still there, then got bug-eyed when I mentioned that it wasn’t for my head but for my lungs.

“Is it really that bad?”

Why yes, as a matter of fact, it is. Having pneumonia 5 times and bronchitis at least a dozen times throughout your life will do some damage. 

I’ll admit, I’m scared of the CT scan. The x-rays to make sure the pneumonia I had in April was gone were “clear as mud” to quote my primary care doctor. She wasn’t sure if it was yet another round of pneumonia or scarring from the previous two rounds. So, I got put on antibiotics. Again.

Funny how she’s prescribed them to me 7 times since the beginning of the year and never thought to check the status of my immune system.

But I digress. 

The other thing that I’m scared of is sounding like a whining little wimp when someone asks me how I’m doing and I give them an honest answer. Which today would have been “well, my right ear is clogging up again and I’m worried about it getting infected again because it might mean a hospitalisation for IV antibiotics since I just got off a round of super antibiotics for that same ear. I have a raging headache. I’m exhausted. My throat hurts. And I impaled where my upper lip meets my gums with my toothbrush last night and I’m in a disproportionate and increasing amount of pain. I’m also concerned about that getting infected too. But other than that, I’m fine, thanks for asking.”

But here’s the thing: I’m not wasting away to nothing, I’m still standing, still working, still able to form coherent sentences. I don’t look sick. And people really don’t believe me when I say I’m not feeling well. Except for Lord Imp, he believes me.

Sorry folks, but I have not only one but two major life processes that straight-up don’t work. Just because I’m not looking like I’m wasting away doesn’t mean that I’m fine. As a matter of fact, I’m far from it. But I keep on pushing. And why? Because I’m strong, and I take pride in that strength. I’m proving to myself that I have no limitations. Trust me, when I tell you that I can’t do something, there’s a reason for it. It upsets me greatly to have to turn things down because I’m not feeling well. But you wouldn’t know that, because all you see is someone who looks healthy and is turning you down.

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Suck my tiny little lady balls

I really wish people would do some research. Yup, they still think I have something with an extra-long polysyllabic name. Fucking use Google. Ignore the several sites that say that I have a good chance of not making it to my 40s, they’re ominous and I don’t like thinking about it. I’m not looking for your pity, I’m just looking for you to understand what I’m going through, even if it’s just a little bit.

Sorry folks, but I’m really not all right.