The Strike

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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…

I…

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.

E.”

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.

Yours,

Ella

Song Quote:

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!

 

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Okay, What Now?

 

 

Stick Figures

 

I want to reach out my hand and participate, but before my hand can move a fog wafts before my brain and all optional activity halts. I stop thinking, stop moving, and stop feeling. Then, surprise surprise, I feel disconnected. For the past two weeks, it has just felt like I’m going through the motions but I’m not really there. Though feeling disconnected can happen to anyone, this feels like fibro fog. I hate it.

The only times when I’ve felt present in these couple of weeks has been while driving. I’ve had four driving lessons so far, and I love it. When I’m driving, I have to be present, and nothing else exists in my brain except the steering wheel, the pedals, the driving teacher and the road. And other cars and pedestrians, I guess. But it’s like there is nothing wrong with life, nothing sad or hard going on, no headache even, because I am completely focused on being alert and aware of my surroundings and in control of where I’m headed. It’s a welcome change, being so wholly focused on one thing that I can’t feel pain.

Sometimes I just don’t know what to do with myself. Lately I end up in these situations where I get to a certain point and I go blank; what now? Like talking to a group of people, for example: we’re talking, getting along, I feel happy to be with people, and then suddenly I just feel my brain being wiped clear and I’m vacant inside. I’m looking at the people around me, at my friends, and I just don’t know what I’m supposed to do next. Do I say something? Should I get up? Should I stuff food into my mouth? I usually do the latter, but it has become increasingly hard seeing as I’ve been put on a gluten-free, dairy-free, processed-free diet for medical reasons. You don’t really get to have comfort food when you’re on a fun-free diet.

I told my friend about this void that appears within me, and about how unmotivated I seem to be (notice the missing post that should have shown up a week ago but that I never wrote), and she told me that she understands and maybe I need to give myself a break. So I did. Well, sort of. I did whatever homework was for the following day, but didn’t plan ahead and do the opposite of procrastination (which is what I usually do because I seem to have been born that way). It helped a little, mainly with feeling guilty about not getting things done; when you decided not to do it, it’s less bad than just not having the inclination to do it. That said, the feeling still showed up today, and I feel it looking back on everything that has gone on. I still feel detached.

I’ve decided it’s just a defense mechanism, and it will go away. I’m sure everyone gets this way sometimes. We wouldn’t be human if we didn’t have a wide range of emotions, and feeling disconnected is somewhere on that range. This is life: I embrace it. There are going to be ups and downs. Like hills. Which I have mastered. Ooh I have a good metaphor similie thing!!! I know when to press the gas, and when to use the breaks- I know how to take care of myself. Ah get it?! Oh my, I am so so proud right now. Just saying.

Also, Tim over on tcopelandfilm/storiesnotworthreading wrote something that was inspired by my blog. I suggest reading our discussion at the bottom of the page because it actually made way more sense to me after he replied to my comment and explained where he was going with it. Thank you, Tim, it meant a lot to see that what I’ve been writing has been able to inspire someone else.                                                http://storiesnotworthreading.wordpress.com/2013/12/27/hinged-lives/

 

Yours truly,

Ella

Song Quote:

I took a walk on a Saturday night, fog in the air, just to make my mind seem clear. –My Fault, Imagine Dragons

P.s. It’s been forever since I sat down to write something. This feels good. Anyone else notice that I’m getting frighteningly close to a thousand followers?! Technically it doesn’t count until 1001, because I do follow myself, but 1000 is just a prettier number.