Realizing I’m Not Procrastinating…and It’s Okay

So I’ve been trying to do homework for the majority of the last few days. I will get some done, but inevitably fall asleep, or lose focus. Prior to getting really sick, this wasn’t an issue. I could watch complex shows, and catch on quickly, every single time. There was no such thing as me not being able to focus on an assignment. Sure, I’d procrastinate, but when I sat down to actually do the assignment, I’d do the assignment. Today, I sat down to do the assignment, and I simply couldn’t answer more than one question at a time without requiring a break equal to the amount of time I put into answering the question…or even longer.

I’ve had to accept a few things about this whole prospect. The first thing is that I’m under an insane amount of stress, and that stress breeds an inability to focus. Even if you want to focus, and aren’t actively thinking about bills, and you know, dying alone…you’re still stressed somewhere in the back of your head. Oh anxiety and depression, you spiteful little bitches you. The second thing, that is really important to acknowledge, is the sheer amount of medication required to keep me alive. Some of which causes sleepiness, while others make it hard for me to sleep. Even the marijuana I use for nausea can make me lose focus. Of course without it I’d be throwing up, or focused on trying not to throw up, so I guess that is a matter of perspective. Fourth, I’m not eating normally. My GI motility has seriously taken a nose dive, and this makes me bloated, nauseas, and unable to provide myself with proper nutrition. Lastly is just flat out brain fog itself, as a result of the nutrition, but also because of my brain.

I have a neurological condition, and sometimes the most basic activities require more energy for me, than they would for the average human. My brain itself is also not running on all cylinders.

When my muscles are fatigued, or weak, I have to really focus on not falling over. When my balance is off, which is always, I have to deal with the same thing. I stopped to really think about my movements the other day, by watching how other people moved, and I was forced to admit that I really do walk differently, hold things differently, even sit differently. A lot of what I have to do, takes more effort, and therefore makes me more  tired. Therefore…my brain is just spent.

Brain fog itself is a problem. They don’t know what causes it, or why, but some of us folks with chronic illnesses, just lose our abilities to focus. It used to be every so often, but lately it’s more often than not. When someone tells me I’ll like a show, I have to say I’ll watch it, but then admit to myself it’ll take a special situation for me to actually watch it. I don’t want to miss things, or not enjoy it, simply because I’m working hard to focus on it. The last time I watched a show I actually enjoyed, I fell asleep during the second episode. People assume that means I’m not interested, but the reality is the opposite. I get so interested that I’m trying harder to focus, which results in my falling asleep, or losing focus. Literally can’t win!

So, now that this is done, I shall go back to trying my best to finish some homework before bed. It’s hard because I used to be the night owl who could write an essay in an evening. I don’t know how to adjust to being the student who can’t stay awake, and has to plan out her coursework meticulously in order to get things done on time.


Realizing I’m Not Procrastinating…and It’s Okay

Fear and Depression

First, this won’t be a totally depressing post. I am happy that I have a treatment protocol and path to potential remission. That my doctors are listening now is a good thing. I am, however, terrified about a lot of things. My life seems to have spiraled lately and I’m trying to grasp at the positives while accepting that things will just suck for a bit.

My lease is up in mid-March, and chemo is planned until April. My roommate and his girlfriend seem to be stepping things up, and I’m anticipating him wanting his own place, or potentially moving her here to be with him. That leaves me homeless, sans roommate, and at the tail end (hopefully) of chemo. Living here is expensive. I could swing a studio, with alimony and disability, but I don’t know if I’d qualify since the income requirements are what they are. I’d have to start looking or a roommate ahead of time, mid-chemo, and that’s not an easy task. Most of my friends are married or in relationships that are moving towards cohabitation.

It isn’t that i don’t want to live alone, I could make a cute studio work, it’s just that my income will never be however much it needs to be to qualify. Even with the guaranteed income of the alimony (if the divorce is finalized) and disability (if that gets together soon) doesn’t mean the complex will take me. I could talk to my current complex about the rates on studios, but I suspect that they’d be expensive, and honestly, I’d rather live a block or two over. Obviously I’d give up location if necessary, but living here gets me out more often which is nice.

I think the moving factor has stirred up a lot of latent stress, too. I am okay single. I prefer not to be, but it’s not a codependency thing. I’ve learned through illness that it’s okay to ask friends for help, but I’ve also learned that I can handle things on my own. There is no shame in dialing 911, and there is no shame in ordering groceries because the thought of the store makes you clutch the toilet. With chemo looming, though, I worry again about caregiver fatigue. Most of my caregivers are in serious relationships, and have to drive a ways to get to me. The others have sort of faded as my health needs increased, despite me refraining from asking them for assistance.

Life is complicated, and I don’t know much. I know I want to work in a laboratory field, preferably DNA or genetics and in research. I know I would love to have children someday, but that gets hard because I’ve had to recently accept that those children may not biologically be mine if I need to use an egg donor.

The biggest thing is the thought of coming home alone. I’m an introvert, and I need my quiet time and space, but I thrive on having someone in my life that I care about and who cares about me, too. It’s not about labels. It’s not about plans for engagements, or weddings, or anything like that, it’s just the connection. If he has a bad day, I’m there, and if I have one, he’s there. We do our own thing, but at the end of the day there is someone there to cook for, to cuddle with, and to lean on.

With my failed marriage it was one sided. I was the one that was there, always, even as someone to abuse. I still cooked, showed affection, did the things you’d expect in a loving marriage, because that’s who I am. Now without him, I’m stronger, but I still crave those activities. It isn’t about codependency, but my own drive to be that person for someone, and to have them respond in kind.

Chemo scares me because I worry it’ll be a while before I can truly date, and I worry that finding someone who is similar to me will be next to impossible given my physical challenges, and illnesses. I’m not discounting the guy, he’s obviously still in my life, but I’m not putting pressure on him because putting pressure on people is absurd. We both knew that this was casual, and while we’ve become best friends, he doesn’t know what he wants, and just because I do know the outline of what I want, doesn’t mean he’s required to conform to it. People need to follow a path to happiness, and if you’re included in anyway along that path, be content. I’m happy that he’s happy right now, and it’ll work itself out, and we will always have our friendship.

My age tweaks me out, too. I’m 30. By the end of chemo I’ll be 31, or nearly 32. I can’t help but do the math on finding someone who wants me, despite my flaws, and that includes the health ones, who also wants kids, but is okay with the idea of egg donation if it comes to that. When do I become a mother? It isn’t like I have a timeline, but when you know chemotherapy fries your eggs, you have to wonder how many do you have left before premature menopause kicks in?

Lonely. Afraid. Depressed. I can be in a crowded room, and get lost in thoughts that throw me into a tailspin. I feel bad because the guy can see it, and I can’t hide it right now. The treatment is as scary as it is hope inducing. I’m not open with him regarding the full extent of the reasons, but that’s because he’s a fixer, and I don’t want him to feel obligated to find me a place to live, or back off of what we have so I can find someone to fill the roles that I’m craving. Now isn’t the time for me to find a partner, it’s time for me to focus on getting well. He makes me happy, and that helps me feel better, which is more important at the moment. There may come a time when we have to evaluate what we’re doing, if we’re sacrificing things we know we want because we care for one another, but not in the way that we need, but for me the time isn’t now.

Life is a mess. It can be beautiful, but it’s still a mess. Like just now, I took a 20 minute break because there was a fire call at the building across the street. The dog, suspecting the emergency services (and there were a ton) were here for me, immediately needed to be outside. It was drive I couldn’t deny him. He has to learn the difference between my emergencies, and emergencies in general. It took pacing the street for him to realize I was okay, at which point we came back, and he went into his crate to sleep off the stress.

Stress. It make me angry. I stress out the people who care about me, my friends, my family, though mostly my friends. The guy says I can call and talk to his family for support, but the truth is I don’t know what that is like or how it would feel. Plus I’ve never met them, so talking on the phone would feel weird. My mother only texts me, and my dad calls but not often. Support from my dad comes in the form of jokes, and being told to stay tough. My mom is dubious, and completely off the deep end about all of it. I guess years of denial regarding my health status have caused a complete breakdown in terms of dealing with reality. They don’t give chemo to healthy people just for fun.

I know what I want doesn’t matter in terms of my health, because what I want is to say screw chemo. I want to take the vacation, or a vacation. I want to run away simply because I can. I want to go with the guy on a business trip overseas, despite the risks, just to say  I’ve been somewhere different. Screw not having an updated passport, I’ll rush it! I want to ignore the increasing symptoms, the miserably pain, vision issues, and GI symptoms. I want to pretend my skin isn’t covered in sores, and that my hair isn’t falling out in clumps. I want to wear a wig and pretend it’s my hair, and not tell anyone the truth.

Instead I’m planning for chemo. I’m lying to friends and family about how positive and optimistic I am, because that’s the girl I created. So many times I’ve said that this treatment will work, only to have it fail, and I gracefully accepted defeat (in public) then sobbed in the confines of my room. I’ve admitted I’ll need help with this treatment. I know my body will be beyond unhappy. I also know that what I want isn’t what I need, and that the life I want to to live is being lived by others right now.

The physical pain detracted from the emotional pain for a while, but I’ve grown used to the physical pain. Now I’m juggling both. I wake up and I can’t move. My neck feels like it’s full of glass, and worse, when I move it I could swear it was broken or breaking. Every joint hurts, though lately the back pain has been so intense I’ve questioned my kidneys. I’ll buy a urine test kit tomorrow to make sure nothing is infected. With each pain I tell myself this is why I need chemo. When I can’t eat, go to the bathroom normally, or see clearly, I tell myself that this is why I need chemo. The unseen damage to my brain and nerves, the drive for a life, THIS is why I need chemo.

Still, what will chemo steal? Why is my ex moving forward and on so quickly, while I’m being handed what feels like a universal punishment. What did I do? Nothing, of course, but it still feels like just maybe I did.

All I want is someone to come home to. Someone who is there, for me to comfort, and for me to give comfort to. I’m not codependent, I’m caring. I thrive off that integration, despite my introversion. I don’t need love, not if they’re not ready, but I’d love closeness and understanding. I’d love having someone who knows I have them back.

Instead I wonder if I’ll have to move away, to a more affordable town. Start all over. Bald, but hopefully in remission. Wishing that things could have been different here, that I could have built a better life. Maybe remission brings better things. I don’t know. I just want there to be hope beyond this.

I want someone to hold me, regularly, and want me, despite my flaws.

Fear and Depression

Bronchitis Anyone? Graduate School and Work Problems, Too

Okay, so when I went to the doctor least week I expressed concern that my lungs weren’t lung-ing the way they should. (I’ve officially decided lung-ing needs to be a term.) I know I talked about the doctor saying my lungs were constricted, with the right side definitely having a harder time than the left. I left confident that my issue was simply inflammation, and I wasn’t catching my guy’s (note: this is how I’m choosing to refer to him, for now…the term is definitely going to to change because we’re casual, so the references will be too) cold.

Now, here’s the thing about having a chronic illness…you’re always sick. Seriously. I will never wake up and not have Bechcet’s. My dad is never going to wake up and not have Lupus. We may going into remission from time to time, but when you have a chronic illness, it’s *shocker* chronic. I have accepted this fact, but it’s made acknowledging when I’m actually sick (like normally people sick) difficult.

I spent Monday night at the guy’s place, after getting a new inhaler and thinking my problems were solved, but woke up on Tuesday with a brutal sore throat. I called my doctor, and he felt it was probably thrush, or the start of thrush, because I wasn’t rinsing and spitting after using the new inhaler. Fair enough. He says to call him on Wednesday if things get worse. Well, Tuesday evening I have to go to a mandatory meeting at work. The meeting was pointless for me, because none of my concerns were addressed. I’m pretty I sure they’re working on a way to fire me, and I just hope they don’t make me come into the office to be fired. I work from home, an email would suffice. “But they can’t fire you for being sick!” Theoretically that’s true, but anyone with a tendency to get sick, a lot, knows that employers find other legal ways to let you go when your illness becomes a burden.

In any event, I started coughing so hard before the meeting, there was blood. Yeah…tell me I’m not dedicated to my job when I show up wearing a mask, coughing up blood, and then go totally ignored when it comes time for suggestions.

Wednesday I call my doctor’s office as soon as I get up. I can’t breathe. The pain in my right lung that was in the lower portion, is now the entire lung, and I know I have bronchitis. This is how it goes with me. I have a day where I think maybe I’m getting a cold, but then bam, it’s in the lungs, and it sticks. I haven’t had just a cold in years, but bronchitis? This is my second bout this year alone. I show up for my 2:15 appointment, and I am winded. I’ve been hyperventilating pretty much all day because I can’t take a deep breath. Walking to and from my car is exhausting. My oxygen saturation is good, which isn’t shocking, because I’m doing my best to breathe however I can. I woke up that morning with purple nails, and I’m trying not to get back to that place.

Problem 1: my doctor is terrified of me. He’s a nice man, a good doctor, but I think having an immunocompromised patient terrifies him. Most of his patients seem to be rich older residents of the fancy community where I live, with a couple younger patients thrown in. Rare autoimmune condition patients? Not his strong suit. His medical students love me, but everyone seems to be fascinated and scared all at once. He is worried because of the Humira, that I may actually have pneumonia, despite the vaccine, or that I’ve partially collapsed the lung, or even have a tension pneumothorax. Basically, he’s freaking out. He wants to give me a shot of antibiotics, and order an x-ray, and the thought of having to walk to the adjacent hospital actually makes me want to scream…if I had air to scream with. He then decides he’s too scared when I tell him it’ll take me a while to get there, because I can’t go more than 10-15 steps without having to pause to breathe. This earns me a ride to the ER in a wheelchair courtesy of the medical student.

Problem 2: everyone fears you have tuberculosis. I don’t even know where I would get TB, but because I’m on Humira, and I’ve coughed up blood in the last 24 hours, and been losing weight, I am repeatedly begged to keep my mask on. Now, ER staff usually don’t worry to bad about the mask when you’ve got a cough, some do, some don’t, but I got my own room (bonus given the number of people there for GI issues).

Problem 3: I’m my best doctor. I get chest x-rays, and a liter of fluids which I begrudgingly accept since I definitely needed them. Between the time I got to my doctor’s office, and my discharge from the ER, I’d wasted over 4 hours…and I had a homework project that was due the next day, an extension I’d already been granted, but now would probably not be able to meet. Aggravated is an understatement, I was downright pissed. Worse? I didn’t want (or need) the antibiotics my doctor ordered, and I have no intension of taking the cough syrup with codeine unless it’s absolutely emergent. What I needed, and didn’t get, was a nebulizer.

I spend all day Thursday, dripping with sweat, trying to finish this project for school. I got so close, but I just couldn’t muster the strength to finish. I had the photos done, but the actual Power Point and photo log were a mess. I was shaky, feverish, nauseated, and my lungs were screaming for air. I told myself I wasn’t doing this anymore. I needed a nebulizer. I had a viral bronchitis that was working its way towards becoming pneumonia, and the only thing that was going to stop the freight train was a nebulizer. Plus the amount of oral steroids the doctors wanted me to take was asinine.

Friday morning I call my doctor and leave a message for his nurse. At this point I have to pause every 4-5 words to take a breath, because breathing has become that much harder. Granted I’d just woken up, so it was at its worst point, but I thin the message made an impact. The doctor called me back, and was shocked to hear how much worse my breathing was. While my service dog isn’t trained for respiratory illness, he was definitely unhappy with my breathing rate. He couldn’t figure out if I was having a panic attack or losing consciousness, but he was stuck to my side, and really not sleeping fully just in case.

All the pharmacies were out of nebulizers. Seriously. They either didn’t carry them, or were out. Winter illness woes. Luckily the community pharmacy was sweet, she called around and found a medical supply company who would sell me one for $40. Seriously? If I’d known they were that cheap, I’d have bought one ages ago! I rush to the supply store, mask on face, breathing terribly, and buy the machine. Then I manage to drop my rent off (five days late…oops), and get my steroids for the nebulizer. I return the steam machine I’d purchased for $50, effectively saving $10…but getting actual medical equipment. (Have a WTF moment, trust me I did.)

Get home, start to work on the project because now it’s like 5:15, and I need to turn it in. I wasn’t explicitly given another day to work on it, but I wasn’t told my time was up either. I accept that handing it yesterday instead of the day before may have cost me a letter grade, but whatever. I realize, hey, I can’t breathe, so I hook up the machine, and begin the breathing treatment.

Spoonie Moment: hooked up to your nebulizer, in pajamas soaked with essential oils, hair a mess, dark circles under your eyes, while typing furiously to finish a graduate school project, and simultaneously wondering if you should at least attempt to log in and get some work done because you’ve been MIA from your office tasks for days

Maybe I’ll get in trouble for having missed work, but you know what? I was honestly at a point where getting up to go to the bathroom was taxing. People have been calling out left and right at my job for stomach bugs and strep throat…even though I work from home, it’s possible for me to get so sick I can’t work. I also missed the start of a new class, which sucks, because that means I’m spending today and tomorrow attempting to play catch up.

Do I regret taking care of the guy, since I undoubtedly inhaled his germs, and my shitty lungs decided to cling to them? No.

Here’s the thing…

I could live life in a bubble, but I wouldn’t be living life. I take the precautions I can, with what I can. My roommate is amazing. She washes her hands the moment she gets into the apartment. I wouldn’t take care of him if he had a stomach bug, because I have a history of literally almost dying when I catch any type of GI illness. (I’m not exaggerating. For some reason I get ketoacidosis really fast, and things go downhill. I’m usually hospitalized for at least 5 days, and my kidneys and liver tend to nearly shut down.) I’m not saying if you’re my significant other I wouldn’t toss some fluids and soup your way, I’m just not hanging around the den of death to cook it for you.

I have realized I need to change a few things. For starters, the school needs to know that I have a chronic illness. My program is fast paced. One class at a time, each four weeks long, with the exception being longer classes for thesis type assignments. (Undergraduate was Capstone, graduate will be a Thesis.) I have one “F” on my undergraduate transcript that haunts me to this day, even though I graduated with a 3.34. I wanted to graduate with honors, and I didn’t. I was sick, I missed a ton of class, and when I changed programs, the unfinished coursework went to an “F” instead of an incomplete. Sometimes spoonies live in denial. We want to be as normal as possible, and we forget that it’s okay to have limitations.

Sometimes it’s hard to have an invisible illness, especially if you’ve been forced to act like you feel fine for a good portion of your life. I was raised in a family where, “You’re fine,” was uttered countless times, often when I really wasn’t fine. Plus we have so many relatives with autoimmune disorders, we tend to just pile it on ourselves and hold ourselves up to the standards of those around us, without stopping to assess our own abilities to function. I’ve watched my father nearly die because he pushed himself too hard, and I’ve had to realize that part of having an invisible illness, is recognizing when it’s time to make it visible.

The first night I spent over the guy’s place, I dumped my meds out on the table without thinking. I then had to explain that I’m not a drug addict, I have an autoimmune disorder. Being a science nerd, he asked which one, and I knew he wouldn’t know Behcet’s (rarely does anyone say they’ve heard of it) so I tell him I’ll tell him if he promises not to Google it. (The photos are terrifying.) Then I tell him if he does Google it anyhow, not to freak out, because I’m not as bad as the photos, and my symptoms are relatively in check.

Now they aren’t, and I think it’s time to do another dating with disease blog…so I’ll end this here and start another. Two for one day!

Bronchitis Anyone? Graduate School and Work Problems, Too