I would say the past couple weeks have been like a roller-coaster, but I’ve never been on one, so I don’t think I have that right. What have I been on? Trains. Busses. Planes. Pain meds. Herbal extracts. Okay: the past couple weeks have been like travelling in a bus that’s on pain meds, and therefore can’t figure out if it’s actually a plane or a train. Stir in herbal extracts.
Last week I wrote (and didn’t post): “I feel so pathetic. I’m so tired. I don’t even know how I made it through the day. I just don’t know what the point is anymore. I fight and I fight, I write inspiring words on my blog and tell people that I’m okay, it’s hard but I’m okay, but I am not okay. It’s all futile, all the hard work and the torturous treatments, they aren’t working, they aren’t fixing me, I’m still like this…. It all just seems impossible. It feels like I’m being punished, and yet held up on a pedestal by my teachers who admire how I handle it all. I don’t want it anymore. But what always happens is going to happen again – I’ll feel like this, I’ll go to sleep, I’ll wake up, I’ll start getting ready and then I’ll just go through the motions of life and time will pass and before you know it I will have ‘made it through the day’ and be ‘coping’ again. It’s inevitable.
I’m… just so
Tired. Of all of it. I can’t hold back the tears any longer. How am I going to make it through? Is this all that life is, just awful things and ‘coping’? Is this what the rest of my days will look like? Cause today was bad.
I feel helpless, and hopeless.
From the strength going on in my last post, I went into a tsunami of fatigue. It lasted a while. I spent the whole next day just staring, because I was too tired to even read. I only smiled once — smiling isn’t energy conserving. The next day I had a test, and the only thoughts I had the whole time were, “Yeah, I know the answer to that. Oh, I have to write it down? I need to move my hand? Do I really? What will happen if I don’t? I don’t think I can. I’m so tired.”
There was also an annoying question on the test that required some calculations (it wasn’t a math test) and I knew that with the brain fog happening I would mess the calculations up and lose the points for the question, so I politely raised my hand.
Me: I know it’s pathetic and sad, but I need a calculator to answer this question.
Teacher: Really? Ella, you really need a calculator? You’re serious?
Me: Yeah, I really do. I honestly don’t know what a million divided by five is right now.
Teacher: Really? Really? You don’t know how to do that? Are you joking?
Me: No, I’m not joking. Can I use a calculator or not?!
Teacher: Okay, I’ll tell you. What do you want to do?
Me: A million divided by five.
Teacher: Ella, it’s 200,000.
It’s a good thing I asked, because I thought it was 250,000. When I’m that sick, I can’t think! I was not happy with my teacher for the way he responded, loudly, in front of the whole class, making a big deal over the fact that I couldn’t do simple math. He’s not a mean guy and he really didn’t mean to be mean. He generally means well and he’s been very kind to me, but sometimes he’s clueless.
If I tell you about every day, this post will never end. I can endlessly find more words to describe my pain and my suffering. In short, I had days that were up and days that were down (like the day that lead to the italics). I had moments of great depression and moments of elevation. Well, maybe elevation is a little extreme; moments of feeling slightly hopeful. Another test this week was messed up because of fibro fog. It’s so frustrating; it’s not that I don’t know the material, it’s that I can’t get it out of my brain.
My right foot has gone off its rockers. I was talking to a friend who lives on the other side of the world and suddenly my toe just dislocated itself. It felt like the toe next to my big one (does it have a name?) just snapped downwards and underneath the one on its right, and I couldn’t get it to move back. My whole foot kind of seized up and I just looked through the camera at my friend and said “I have to go call my mom now”. I wrote to her later and explained it all. I have no idea what it was, just some weird cramp, but it was extremely painful and scary. It went back into place after I laid it on a heating pack, and I know that it didn’t actually dislocate itself, but it felt like it did.
Then a few days ago, when I was having an up day, I had a couple friends over for a movie, and when I bent down to press play it happened again, exactly the same way: suddenly, without me having done anything, my toe just pops out of place and gets locked in a different position. I must say, I’m very proud of the way I handle sudden pain. I am the picture of serenity. Ish. Anyway, it went kind of like, “Hey, do you think you could reach above the fridge? There’s a purple pillow there. Yeah, could you just stick that in the microwave and hit start? Oh, thanks! What? Oh, nothing. My toe just feels weird. Yeah, I’m fine on the floor. Oh, thanks, that’s really sweet, but I honestly don’t think it would go well if the two of you tried to lift me and swing me on the couch. I’m good, I’ll sit here for a few minutes.”
Other than that the night was great. Unfortunately I still feel it spazzing out. My whole foot has been cramping ever since and my toe still feels dislocated. There seems to be no end to the weird sensations that plague my body daily. Sheesh, I sound like I’m 80.
I’m tired. I’m scared I’m going to run out of fuel at some point. I have a few high-pressure weeks ahead of me, but I need to work a lot on calming down, seeing as that is probably the cause of the foot fiasco, as I have taken to calling since half-a-second ago.
I think I’m being shunned by my feet… again. –Homeless, Ed Sheeran
Okay, I’ll admit, I have been waiting a long time to use that quote. Glad it works so well here!
P.S. I would love it if you would leave a comment with your favorite quote. It can be from a song, something you saw online, a well-known person’s fancy sentence, a life motto, anything that comes to mind when you see this, really. If you know where the quote is from/ who said it, please include that too. Thank you in advance!