Tag Archives: chronic illness

Danger, Will Robinson

When you are chronically ill, hope is a dangerous thing.

At first you do. You hope. You hope fiercely. It’s what gets you through so many doctor appointments and awkward procedures and pain-filled days. Hope is what gets you through. But eventually, that hope fades.

After going to get the ninth second opinion, your hope is beaten down. After the third surprise rectal exam, you need more than hope. And so your hope becomes steel. Steel that laces itself through your spine and your soul. It helps you stand up straight when you’ve gotten embarrassingly ill at a dinner party. It helps you keep your chin up when your latest doctor tells you that they found nothing new in the latest round of tests.

Last night I had an MRI. I was pretty annoyed going in. While I was sore and worn down, I wasn’t full on sick and therefore, getting imaging work done seemed like a waste of time and insurance money. The problem with scheduling imaging of just about any kind is that those procedures have to be set up usually at least a week in advance and my abdominal troubles have no interest in observing any sort of rational calendar. It’s like shooting at a target from on top of a moving train. It’s hard to get data, and this problem can’t be solved without data. It’s immensely frustrating.

So, last night I went to Weill Cornell Imaging and settled in for three disgusting rounds of contrast and half an hour in a giant magnet. And I got sick. I’m not sure if it was the contrast that distends your stomach or stress from pretty much anything, but by the time that they put me in for imaging I had already needed to take to pain killers and spent a while laying on the cool tile of the bathroom holding myself in the fetal position. It was the best thing that could ever possibly happened. I got sick right when I needed to be.

And now I have hope. And now I am terrified. Because what if the tests don’t show anything? What if this doctor gives up just like the last one? The last one was lucky and when I saw her the first time I hadn’t eaten anything in several days so she could go in immediately. She did a colonoscopy and found ulcers and though she had a diagnosis. But a year and a half later after blood tests proving her wrong, she threw in the towel. If this test shows something, will it be enough? I want to hope. I want to be better. But every time I get my hopes up, my spirit gets shattered when nothing comes of it. How many times can you get a punch to the gut like this before you give up? How do you find the balance between pursuing a cure that may never come and finding a way to live your life as it is so it doesn’t pass you by. I don’t know. Finding the answer so far has been terribly painful and I’m not sure I want to keep looking.

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Sick Day

I have nothing new to say. The words I’m about to type have been typed by me and many before me. They’re not new, and I hate typing them.

I am tired of being sick.

I am not just tired of being sick, though. I am tired of being tired. I’m tired of being depressed. I’m tired of people not understanding my situation. I’m tired of not being able to explain my situation. I’m tired of not having answers. I’m tired of being told to be patient for answers. I’m tired of not talking about being sick because I’m worried that I talk about it too much. I’m just really tired.

It’s not going to magically get better anytime soon. I’ve been getting comfortable with the idea that I’ll always be sick and that this is just a part of me now. There is no Doctor House for me. This will not be over in a period of time that an episode of TV can cover. And yet, I must keep up hope, that there is some magical cure out there for me. I must at once accept my status quo and reject it. I must not talk about what I’m facing, because it’s big and dark and scary and sometimes really gross. But at the same time, I must be courageous and fight this battle and speak my mind.

I am tired.

I’m tired of this being such a big part of me.

80%

I’ve been struggling with a new symptom of whatever non-named autoimmune disorder I have: Immune-Mediated Cognitive Dysfunction. It’s a fancy way of saying I have brain fog.

For the last few months, I’ve been noticing that it’s harder for me to read and retain information. I’m more forgetful and sometimes I have difficulty saying words or even stringing sentences together. I need more sleep (9 to 10 hours) and I run out of energy faster. In short, my executive brain function is being put into “Power Saver” mode.

Just in case you are wondering, yes, it’s terrifying.

To be clear, it’s not that my reasoning abilities are gone, I just have less of them. I can still solve a task, it just might take me longer. I can still juggle multiple tasks, but I won’t finish them all as quickly or as cleanly as I once could. I am functioning anywhere from 80-85%.

This isn’t just something that sucks, it’s really difficult to get used to. My mind is still used to functioning at 100% capacity. I am not, nor ever have been a stupid person. And now, I’m not as smart. I’m not as quick. I’m not as bright. There’s not use saying, “Oh, that’s nonsense, you’re brilliant.” All the wishing in the world won’t make this untrue. I can’t stretch as far as I once could, and because of that, I’m still tripping up when I try.

So, please be patient with me. I know what I can handle – lots of trial and error in the last months have helped assure that I cannot miss the line in the sand. I know what I’ve got going on and what I need to do. Please don’t bring this up, or my illness in general, unless I bring it up with you first. I have to live it every day, it is therefore not my favorite topic of conversation. Please don’t question my judgement on how far I can push myself – I know. Sometimes I have good days, and I just want to have a good day and not be reminded of the many bad ones that I have. Please, be kind.

International Incident

Well fuck. Looks like I’m not going to Eastercon after all.

For various reasons, my doctor has asked me not to travel internationally for the next six months or so. I admit, when my doctor brought this up, I laughed. I mean, after last year, now someone is going to ask me to sit still?

I’ve got lots of thoughts and feelings about this. One part of me says “Fuck the doctors, I’m too young to be ill!” another part says, “Don’t be a fucking moron, listen to your doctor!” One part says” After last year, I’m pretty sure international travel won’t kill me,” and another says “This is a really good excuse to hide in my couch forever.” The biggest part of me just thinks “Fuck, I’m going to miss my friends.”

While I’d like to shrug my doctor’s advice off, I’d be an idiot not to take her seriously. Guess I’m going to have to find alternate plans for Easter weekend.

A New Normal

You know what’s weird to lack? A daily routine.

Most people have some variant of get up, go to work, come home, sleep with a bunch of little personal details. What they eat for breakfast, if they eat breakfast, do they eat with a spouse or on the way to work and etc. That sort of thing. We have routines from a young age starting with school and moving to work of some sort. They say that it’s good to break a routine every once in a while and it’s true. Too much of a thing, even if it’s a good thing, can be a bad thing. Change is good.

But not having a routine is a strange thing. You grasp for one that might not be there in an attempt to right yourself because not having one feels a little bit like a ship tipping over. Life last year didn’t allow for much of a routine. Now, truth is, I did that to myself. Nobody forced me to get on all those planes and to live in airport lounges, but I would have been desperately lonely had I not. Pro-tip: don’t spend the first year of your marriage in a country where you can only speak to your husband. We made it, but I’m not entirely certain how we did. In the end, disrupting my routine to the point that my routine was chaos was worth it, but it wasn’t easy and now I’m trying to remember how to build one again.

I don’t have work to go to, I don’t have school to go to yet, but I can’t exactly spend the day in bed. So what do you do when you have nothing to do? Let me tell you that while there is a small urge to clean everything in the very beginning it is small enough that I don’t actually get to clean everything and eventually I just end up bored. Being bored is no fucking fun. Having nothing to do is crazy-making. Remember that the next time when you’re talking to someone who is unemployed.

Turns out that building your own routine isn’t easy. I have no reminders or guidelines, I have no structure outside of Will leaving and coming home from work. I have email that I need to get to, but surely I can get to it later, right? I’m a procrastinator by nature. You don’t make a procrastinator their own boss for a good reason. Except now I am.

Thank ghod for Japan’s obsession with stationary. You couldn’t turn a corner in the town we lived in without running into a stationary store that had incredibly adorable pre-printed To-Do Lists. I have travel themed lists, cat themed lists, penguin themed lists and even book themed lists. And those lists are how I get things done around here. I had to bribe myself at first. Every time I got something done, I allowed myself to open a piece of mail from a friend or one of the Cards Against Humanity Bullshit items. But now I don’t need the bribes. The simple act of crossing through the list and getting to flip another page is enough motivation. I push myself to get my To-Do list done as soon as I can.

The real trick for me was to know what was reasonable to put on the list. If I put a bunch of small items on the list, it can seem like my list is longer than the Wall of China. If I put too massive of a job on my list, it feels like a boulder that I’ll never be able to work through. Learning to break up your tasks into manageable chunks is something you quickly learn in the real working world, but I’m not sure if I’ll ever get back to that world. Working through a list consisting of ‘Write letter to Brigid’ and ‘Call doctor’ can be annoying sometimes. It feels like I shouldn’t need a list to do those things. But when you’re sick, little things add up and become big things. While I’d rather my routine be filled with big things, right now I’ll settle for getting something done at all.