Archive for the ‘The Brain’ Category

I get a lot of emails from people who read here explaining why they don’t comment. Many of you have told me that you just don’t know what to say sometimes, and I get that. I read a lot of sites that I don’t comment on. Sometimes it’s because what I’ve read leaves me speechless (I somehow doubt that’s ever the problem here, heh) and sometimes it’s because I don’t have words that can help, or that even can make a dent on what I’ve read.

I’m the first to admit that it’s hard to know what to say to someone who’s going through tough times, even when you’re going through them yourself.

And so I sat down and tried to come up with suggestions of things to say (though I certainly never require comments), and honestly I can’t come up any. Because, dudes, it’s difficult, I totally get it. So I’m going to take the other route.

These are the things you really shouldn’t say to someone with a chronic disease, pain, or frankly anyone. It’s also known as the list of things that people say that make me want to smother them with a pillow full of nails:

1. “You look like crap today.” A friend of a friend said this to me a few weeks ago, and I need you to be impressed with the fact that I didn’t smack the crap out of her. I almost feel like I shouldn’t even have to write this one out. Frankly, it’s NEVER nice to tell someone they look like crap, even if they do. And understand that if I look like crap, I probably feel 10 times worse than I look. In general, I’m pretty decent at hiding my pain, so when I can’t, I’m miserable. Telling me I look that way is DOING IT WRONG.

2. “You look fine, it can’t hurt that much.” Really? Because judging by your face, you must be in a ton of pain. Or at least, everyone around you is.

3. “It could be worse, have you heard about so-and-so?” I see the need for perspective, I really do. Perspective is important, not just for people who are chronically ill, but frankly, for everyone. And please understand that I feel for anyone who experiences pain, whether mental, physical or emotional. But that said, hearing that someone else is in pain, or has a life situation that’s worse than mine, doesn’t change my pain. It’s like if you were just run over by a car and I said, well, it could be worse, have you heard about Joe? He was run over by TWO cars. I’m sure you’d feel better right away.

4. “You just need more sleep.” Of course I do. Who doesn’t? But my head doesn’t hurt for lack of sleep. I’ve had weeks of vacation where I’ve gotten as much sleep as I could possibly ever get, weeks that were completely devoid of stress, and yet, were still filled to the damned brim with pain. I got 10 (crappy, interrupted) hours of sleep last night and as I write this I am miserable. My head doesn’t hurt because of lack of sleep. But my ability to cope with it does, so don’t be a jackass today. It won’t end well for you.

5. “If you’re in so much pain, why did you do x, y, or z?” This one bugs the bejeezus out of me. First, the tone says that you think I’m lying about pain. And being called a liar is one of my favorite things. Recently I have gotten crap from a number of people for going on vacations. And I’m completely perplexed by this. I have chronic pain and therefore I shouldn’t get to go on vacations? I don’t deserve to relax? I mean really. But it’s not just vacations. My head hurts all the time, but I am still going to go out to dinner, I’m going to go to a concert next week, I’m going to do anything I can manage. Is it stupid? Probably. But having chronic pain doesn’t mean I can’t strive for normalcy.

6. “Maybe if you didn’t think about it, it wouldn’t hurt as much.” Sigh. Let’s do an experiment. Go grab the biggest hammer you can find. Take a full swing and slam it down on your big toe. Now, don’t think about the pain. That should make it all better.

7. “Maybe it’s all in your head.” Maybe it is. And maybe next time you get a cold or the flu, you should see a psychologist before any other physician. Even if this pain is all in my head, it doesn’t mean that it doesn’t hurt.

8. “My mom/aunt/cousin/dog has headaches and they don’t have to miss school/work.” More power to them, really. I greatly admire people who deal with pain better than me. I wish I didn’t have to miss school, I wish I could cope better, I wish I had less to complain about or was more able to dial back the whining. If you think I get pleasure out of whining, you’re wrong. But sometimes I need to know I’m not alone and sometimes I just need to acknowledge how bad things get. I know it’s not very peasant for everyone else.

9. “It’ll probably get better when you stop going to doctors, that always happens.” Yep. There’s obviously a direct correlation between headaches and time at doctor’s offices. They have been shown to cause low pressure in most patients. OR NOT.

10. “It’s always something with you, isn’t it?” It’s true that I have had more than my share of health problems. It’s true that the list of symptoms is long. But this particular comment is the absolute worst. Even when said in jest, it makes me really upset. I can’t quite put my finger on why, but it makes it seem like I am choosing this, like I have control over this. And if I haven’t yet made it clear, I am so profoundly out of control in all of this, that it’s driving me literally near to crazy. Okay fine, way past crazy. Whatever.

But the more I think about all of this, the more that I think about all the nice things that have been said the more I realize that the very best thing that anyone can do or say, is just be here. Is to just let me know that I have someone to rely on, someone who cares. You don’t ever have to say exactly the right thing, hell, you don’t even have to say anything at all, just be here.

And not telling me I look like crap. That one’s pretty important too.

After the world’s crappiest night of sleep, with a hideous headache, I took my last final exam of the semester today. Stick a fork in me because I am done with this semester.

I have no idea how to wrap up this semester. I don’t have any eloquent words or flowery monologues today. If I’m being perfectly honest, I don’t know how I managed.

In January I had a myelogram that created what my neurosurgeon called a “massive” spinal fluid leak. Even putting a pillow under my head while lying down created such pain I literally thought that I was better off dead. I have never felt anything like that. And somehow, less than a week later, with many MANY milliliters of my own blood in my back, in a pretty significant amount of pain, I was back at school.

I can only describe this semester as the work of sheer determination. This semester I had one lumbar puncture and 3 blood patches. This semester I had a headache every single moment of every single day. This semester I struggled with pain, I struggled with the re-emergence of an eating disorder. I struggled with thoughts that my life wasn’t worth it any more.

I have never struggled like I have this semester. This year if we’re being really honest.

But tonight, this year isn’t what I’m thinking about.

Because two years from today, I will graduate.

Two years from today, I will hold in my hand a doctoral degree from an outstanding program, I will have a hood placed over my head indicating that I finished, that I made it.

My transcript will never show straight As. I won’t cross the stage with extra cords around my neck, or with awards in my hand. I will not be in the top of my class, nor will I make the news. I won’t be one of the graduates they ask to come back and teach. I won’t be one that mentors or tutors other students.

And that’s okay.

I used to dream of those things, but life has a way of changing dreams. Of changing perspectives. Would I love for those things to be in my future? Of course. But what I am doing right now is worth more than any award, or cord, or honor. I’m doing the best that I can. And that’s all that I care about. That’s all that matters.

Because what I will be in two years is a graduate.

I will be successful. If only because of a desire to prove everyone wrong, I will succeed. If only because I set my mind to this, because I decided that this is what I wanted, I will succeed.

Two years from today I will gain a few initials after my name. I will enter a profession I have only dreamed of. I will begin the future I’ve planned and erased in my mind so many times.

Two years from today, I will cross a stage to the rest of my life.

Two years from today.

I think I can honestly say that the last seven days have been among the longest in my life. Tomorrow is my 8th and last final exam for the week (and the semester). I am exhausted in every way that I could even begin to describe.

This week, for the second and third time ever, I’ve actually used the extra time I have through the student disability accommodations I got this year. And what that does to my psyche, I can hardly begin to explain. This week I have felt mentally sluggish, emotionally fragile and perpetually frustrated.

I didn’t struggle in high school. I put in a lot of effort, but any class I studied for, I got an A in. In college, the same was mostly true, though many of those As were replaced with an A- or B+. But now, for literally the first time, I’m facing the possibility of not succeeding. And ironically, it’s come at a time when I am working harder than I have ever worked before.

And yes, this program is tough. But this program is not impossible. I have nearly 100 classmates, and all but a very, very small percentage of them are passing, many with high grades.

But it’s not about my classmates. It’s about me.

It’s about the fact that I spent 20 minutes yesterday crying because I could not, for the life of me, figure out my mock patient’s right from their left. Simple things that everyone else can do, I cannot. Simple things I used to do, I cannot. It takes so much more effort to remember things, except for the totally unimportant details, which always seem to stick immediately and indefinitely in my brain.

I am tired.

I’m tired of working this hard to do what everyone else does. I honestly don’t care how my grades compare to my classmates. I only care about how my grades compare to what I’m capable of. Or what I used to be capable of. 5 years ago, I would calculate the exam grade necessary for an A, or A-. This week I’m calculating for a C. The lowest passing grade in my program.

I just feel like I’m trapped in a life, in a brain that isn’t mine. I feel held back in areas I used to be successful in. I feel confused by simple concepts. I feel like each day gets more difficult instead of less, each day the pain gets a little worse, a little less tolerable.

And yes, the easy solution would be to withdraw from school. To wait, to see if we can fix my headaches and try again later. And I know that many of you shake your head when I refuse to do that. But I can’t.

I cannot lose anything else to this pain. I will not lose a year of my life, a year of my career, a year of the life I planned, to pain. I wish I could explain it in a way that made sense, and in a way that didn’t confuse and irritate some of you, but I can’t. The best way I can describe it, is that it’s like I’m fighting for every piece of normal I can find in my life right now.

And until I lose that fight, until normal isn’t a possibility at all, I have to keep going. I owe myself that.

Two weeks ago when I went to the neurosurgeon he said that we should move forward with another blood patch. I wasn’t happy, to put it mildly. I agreed anyway because I felt like I would be a hypocrite if I spent so much time saying that I would do anything for pain relief, but then turned down the only treatment available.

And yet, that’s exactly what I’m going to do.

I’ve spent hours researching, combing through articles, trying to find literature that gives any evidence that I have a spinal fluid leak. But simply put, there aren’t any articles, there isn’t any evidence. My symptoms do not match up with a leak. The protein in my CSF isn’t high, the headache has lasted for over 9 months when a leak should resolve on it’s own much, much faster.

And most importantly, the other patch didn’t stop the pain. I think that the brief partial relief of that patch was almost entirely because shooting that much blood into my epidural space caused my pressure to increase. Which makes sense when you realize that as soon as the back pain from the pressure went down, the headache came back. It basically makes perfect sense.

I have intracranial hypotension, but I do not have a spinal fluid leak. My brain is what’s wrong. I’m not producing the adequate amount of spinal fluid, and that’s why my head hurts.

And that’s really why I’m saying no. Of course, I also don’t want to give up my only 4 days of vacation between semesters to an incredibly painful procedure. I don’t want to spend the thousands of dollars that this procedure costs. I don’t want to deal with the side effects and extra pain that isn’t helping me in any way.

And if I’m being completely honest, I don’t want to exhaust this option. I don’t want another treatment to fail. Because it means that there’s almost nothing left we can do.

And yet I’ve spent hours today, in tears, because the alternative isn’t good either.

My insurance only allows one referral per specialty per year, and I’ve already used up my neurologist and neurosurgeon this year. Going back to the old neurologist is not an option because she’s already thrown her hands up in confusion with my case. And going back to the neurosurgeon right now isn’t really an option either. He has given me 3 choices, and frankly, none of them work for me right now. It’s not his fault, he’s doing everything he can.

So what this boils down to is that I’m giving up. For now.

I am not saying that I’ll never try again. I’m not saying that I’ve given up all hope of ever having a pain-free life.

But what I am saying is that I need a break. The treatments are becoming almost as bad as the headaches. And when they don’t improve the headache, then it’s just extra pain for no reason. I cannot bear more physical or emotional pain right now. I just can’t.

I know several of you are mad at me, disappointed with me. And I get it. Yes, I would fight harder for others I love, no, I wouldn’t let them quit. Yes, that makes me a raving hypocrite, I’m aware of this.

But I’m tired. I can’t fight anymore. I don’t have the energy, I don’t have the sanity, I just can’t.

And I hope that you can understand that if I thought there was another option that didn’t take even more of me right now, I’d do it. But there isn’t.

Yes, I am very intentionally closing this door to this treatment. And now I’m just praying that somewhere, somehow, a window of relief will open soon.

I waited in the office waiting room for a solid 45 minutes by myself. It was sort of my fault because I got there 30 minutes early, foolishly thinking they’d take my back early too. I sometimes forget that doctor’s offices don’t work like the rest of the world.

I was more than thrilled when someone finally came into the waiting room with me, and even more so when I discovered that she was hilarious. A few minutes after she arrived nurse came over to get her paperwork and asked her to verify her date of birth. After she responded that it was 12/30/20, she looked the nurse straight in the eye and said, “would you like to know the date of my last period too?” The shock that registered on the nurse’s face was priceless.

Her jokes with the office staff gave me a few moments of much needed laughter, a few minutes where I wasn’t drowning in my own thoughts and worries.

When I was finally called back, the nurse asked me a few questions. She seemed sad for me, but I’m getting used to that. Uttering the phrase “8.5 month old headache” has that effect on people. It’s not that I don’t appreciate the sympathy, it’s that lately it’s gotten tougher and tougher for me to cope with the pain, both because I’m so tired and because things are getting worse instead of better. And frankly, sympathy makes it worse.

After the nurse left I waited a little while longer for the neurosurgeon to come in.

He asked a few questions about what happened after the last blood patch, and then it was my turn to ask him questions. I tried to be adult about it, but my question was the most childish one I’ve ever asked. Before I had time to stop myself, I blurted out my question. “Why me?”

I asked why I get massive spinal fluid leaks from lumbar punctures when they’re relatively rare, when other people really don’t. I asked why my body isn’t fixing itself like so many other peoples’ do with spinal fluid leaks. I asked why we can’t seem to find an answer to this when this is his specialty.

I didn’t expect him to have an answer, and he didn’t. He said I may just have poor quality in the covering of the spinal cord/canal, he said it may just be completely random. It might all be chance.

And so we got onto the next order of business- what the hell we can do now. He gave me 3 choices for now: a blood patch, a myelogram likely followed with a blood patch, or a 2 day infusion following by a myelogram followed by a blood patch.

I asked him what he thought, knowing that all I really had time and money for right now is the first choice, and thankfully he agreed. But he threw in a disclaimer. He said that if this blood patch doesn’t work, it may be time to consider that we have it all wrong. He had previously suggested that perhaps I just wasn’t producing enough fluid, but later rescinded that diagnosis, even after the negative myelogram.

And now we’re back there.

He said that there are just a number of things that are pointing to the possibility that this is all because my body isn’t producing CSF the way it’s supposed to, the way it used to. And do you know what the treatment is for that? Well, neither did he. Because basically it never happens, so there isn’t treatment protocol to follow. He told me he would do some research and suggested that I do the same, but I’ve come up with nothing so far.

I’m trying to keep my chin up and hope that this blood patch works and all this worry, all this stress and sadness is for nothing, but I’m having trouble. The signs all point to this not being a leak. The signs point to this being my body being what’s wrong. And more than that, they point to a solutionless problem. They point to pain that cannot be fixed, symptoms that cannot be cured.

I’ve been sitting on this for 5 days and I still can’t really wade my way through it. I went from being secretly hopeful that he really did have a solution like the nurse made it sound like, to being completely demolished by the idea that there isn’t a treatment at all. I went from my perfect dream scenario to one of my very worst nightmares, all within a few moments.

And so that’s what happened. That’s the whole story, unedited. But what’s left unwritten is all that’s going on in my head. The disappointment, the frustration, the pain, the sadness. The emotions I can’t give words to. They come in waves, ones that crash the hardest in the quiet moments, in the really painful times. But even when things are busy and I’m at my happiest, it’s all still there in the background, the tide quietly falling, waiting to rise again.

I’m tired of treading water, tired of swimming through this. I’m tired of being brave and strong, when all I really want to be is me again.

I called my neurosurgeon’s office last Friday from in the throws of a horrific headache. No one answered, so I left a message. I basically told them that I really didn’t know what to do. I told them that the blood patch had helped for less than a week and I told them that I was ready to discuss other treatment plans.

And then at 8:03 on Tuesday morning I got a call back. The nurse said the neurosurgeon wanted to see me this week. He wanted to discuss treatment options.

OptionS.

As usual, I’m fighting myself on this. This week has been such an incredibly terrible week in terms of headaches. I haven’t been able to accomplish 90% of what I wanted to, and the 10% I did accomplish was of a quality that never would’ve been acceptable to me in the past. And so there’s a part of me that wants to be hopeful. There’s a part of me that wants to think that perhaps this time we’ll figure out the answer, that this time we’ll stop the pain for good.

And then there’s the rest of me. The part that is bitter, tired, and in pain. It’s the part of me that has sobbed tears of frustration, of anger over this situation. It’s the part that swore I was done with hope. I know it sounds pessimistic. But the only way to preserve myself, the only way to not be crushed by reality is to not expect big things. To not hope for anything better because the let down is so great.

Tomorrow I have to face a future, maybe a big let down, I don’t know yet. I’m prepared to ask a lot of questions, to see what my options are, to get opinions from this doctor, who is an expert in this field.

But I’m afraid. I’m afraid that his opinion is that the only thing I can do is the multiple day in the hospital, extremely expensive test/treatment that may or may not work. I’m even more afraid that his opinion is that there’s nothing more to be done.

I’m just afraid.

I’m afraid of my life.

I’m afraid of my future.

I’m afraid of pain.

And I’m afraid that my life and my future are going to be completely full of it.

First thing Saturday morning I got an email from one of my instructors. The exam I’d taken on Thursday was graded and my score was available online. I clicked over, anxious to see how I’d done. I knew my grade wasn’t going to be as good as exams in the past, but I was hopeful that I’d at least pulled the class average of 90%.

And so, when I saw the 85% in the gradebook, I was crushed.

Logically, I know that an 85% is fine. It’s passing by a wide margin and I’m glad for that, really I am. But I can do better, I have done better.

Today is the second consecutive day of class I’ve had to leave out early because of pain. I did everything I could both Friday and today to make it through to the end, but I couldn’t. The headaches are escalating, and my ability to cope isn’t keeping up with the changes in pain. I’m a mess. A weepy, tired, sad mess. And I am so frustrated, so in pain, so tired of all of this.

It’s not fair. There, I said it. I know it’s a kindergarten response, but today, I feel like a kindergartener. I have no control over anything in my universe. I can’t even go to school all day.

And the more this happens the more I find myself constantly thinking about how things would be if it weren’t for this headache.

I got an 85% on that test, not because I didn’t know the material (I did), but because of little mistakes, little mistakes that I never would’ve made 8 and a half months ago. And because of that, I am overcome with questions. With hypothetical wonders.

I wonder what my grades would be like if I didn’t have this headache, this life sucking vortex, this sleep stealing pain. I wonder if I would be more confident, and less stressed. I wonder if I would stand out as a competent student instead of as the girl that needs accommodations.

I wonder what my marriage would be like if I wasn’t in pain. I wonder if I would be a better wife, if I would do more of the things I always envisioned myself doing. I wonder if I would cook dinner with more regularity, if I wouldn’t cancel plans as often. I wonder if we’d fight less, if we’d be happier.

I wonder what shape I’d be in if I wasn’t in pain. I wonder if I would be exercising, if I’d be fit like my classmates. If I’d have a trace of muscle, even with the 2 month lifting restriction. I wonder how much energy I’d have, what I’d do with it. I wonder if I would spend as much time lying on the couch.

But mostly, I wonder who I’d be.

Because what I am today is so far from anything I ever imagined, that I’m practically a stranger to myself.

Many days I can cope with this change, with being this stranger. I can maintain some level of hope trust that things will get better, that frankly things HAVE to get better. But today, like many of my most painful days, it is a struggle. I don’t know how to keep moving forward when things aren’t improving. I don’t know how to push through when there’s no end in sight. No matter how hard I try, I just don’t know to keep my chin up when things are only, are always, moving down.

I find myself facing the worst wonders of all. I wonder if I’ll get used to this life. I wonder if at some point, I’ll stop caring that my life, my future, has been completely changed.

I wonder if this is who I am, for “good.”

Today I sat around a patio table with four of my very good friends. Of the 5 of us, it just so happens that 3 of us have pretty serious health challenges.

One of my friends has Cushing’s Disease, which is likely going to require brain surgery soon. Another has a heart problem. And I have a crazy screwed up brain. When you sit down and think about it, the odds of the three of us being in the same program at the same time are practically impossibly small.

And today we three anomalies sat and talked for a while.

We talked about the reality of life with disease.

We talked about all the stupid little things we do to try to find control in our lives and how often they totally backfire.

We talked about how hard it is to get up and keep going when things seem like they cannot possibly get worse or seem like they’re never on track to be better.

We talked about how draining this life is. How exhausting it is just to live with pain, with disease.

We sat, a group of 3 people facing completely different challenges, and we shared a bond. Tears were shed, truths that had been long hidden were shared.

For the first time in a long time, I didn’t feel alone.

It’s hard to describe how isolating disease and pain can be. There’s the very obvious missing out on life component that’s easy to understand and to imagine. But there’s a secondary isolation. Sometimes it’s literally your absence from events that you could attend but choose not to, other times it’s more subtle. It’s physically being somewhere, but being detached. It’s the feeling of being completely alone in a room full of people.

Today’s conversation reminded me of the saying that misery loves company. But I don’t think it’s really that simple.

I don’t think I’ve ever wanted other people to be miserable or sick or in pain just because I am. Frankly, I don’t wish chronic pain or disease on anyone (okay, very occasionally, in my head, I do). But on days like today where I am surrounded in my misery with others who understand it, I realize that I have missed company. That I do really love it.

I really think that essentially we’re all bearing our own burdens. Even if we can’t admit it to anyone else, we’re all fighting our own misery.

And maybe the key to winning is finding allies who share in those fights, in those experiences. Finding people who provide you company in the face of misery.

I’m not going to wrap this up in flowery language or pretty prose, I am struggling.

Floundering.

Drowning.

This week has been the toughest in a long time, for a wide variety of reasons. I’m not sleeping well at all. No matter how well I wind myself down or how early I climb into bed, I cannot sleep the whole night. It’s already tough to get up at 5:30, it’s especially tough getting up at 5:30 when you finally fell asleep around 11 and then got up at 12:02, 12:46, 1:36, 3:04 and about 12 other times between 4 and 5:30. I am not a cat, I need more sleep than that.

Sometimes I am surprised by how much energy it takes to live in pain. I feel like I’ve run a marathon, when in reality, all I’ve done is sit in a desk for a few hours. My head pounds, my vision clouds, my concentration slips to nothing. Earlier this week, I forgot my address. MY ADDRESS. This afternoon I forgot the 4 digit code to my sister’s condo. I can still remember my kindergarten best friend’s phone number, but suddenly my address won’t stick in my brain.

Simply put, things just seem exceedingly difficult lately.

I crave normalcy like it’s oxygen. I want to be pain free so much that it (ironically) almost hurts.

I feel like I’m being betrayed by my own body. Everything I’ve read (and that’s A LOT) says that most people with spinal fluid leaks eventually normalize on their own, that their body figures it out. That it’s self-limiting. And it makes me wonder why everyone else’s body can fix it, and mine cannot. It’s been greater than 8 months now, it’s been 6 since we figured out the problem. And still, daily, endless, sometimes excruciating, pain.

It makes me wonder how this even happened in the first place, how I drew this one in a million card.

Why me?

I struggle with that question a lot. I know I shouldn’t ask, I know that there are better things to spend my time wondering about, but I can’t help it. I wonder if I deserve this, I wonder what my penance should be to make up for whatever horrific sin I must have committed. I wonder exactly what I need to do to get out of this particular circle of hell. I do my best to keep moving forward, to not give up everyday the way I want to. But it’s getting more difficult by the day, the hour, the minute.

It’s become a tremendous challenge just to live, let alone succeed at anything.

Everyday I wake up and hope that it’s the last day, I hope that it’ll get easier. But it never does. It never gets easier to greet the day with a headache. It never gets easier to try to learn and master new information with terrible pain. It never gets easier to watch my peers living carefree lives, painfree lives. It never gets easier to know how much of my life I’m missing out on.

And most of all, it never gets better.

Some nights I sit down at the computer with a pretty good idea what I want to write about. And many of those nights, like tonight, I hesitate. I realize that after a while, this blog starts to read like a soap opera, or a big fat drama festival. I know that it is sometimes a chore to read.

This is sort of how I feel in life too. Like I’m crossing the threshold from being a daughter, wife, sister, friend, etc, to being a burden. Some days I wonder if I’m contributing much besides trouble and tragedy. And often I think the answer is no.

But even when I put on a happy face, or choose to write a light-hearted blog post instead of a harder one that’s rolling around in my mind, I don’t stop living this tragedy. This drama festival.

Tomorrow will mark 8 months since my head started hurting. Each month, each silly milestone, shocks me a little. I’ve lost two-thirds of this year to pain and unlike last month, there’s no end in sight. There’s no treatment shining ahead. There’s no hope this month, this milestone.

Instead, there’s a sense of seriousness. A sense of permanence.

This is my life.

I’ve found myself concerned lately with what this new reality means for my family, for my friends, for my relationships with those people. It’s one thing to have a friend who is temporarily ill or in pain. It’s not easier, that’s not what I’m saying at all, because I don’t think that’s how pain and sickness work, but there’s an end to most conditions. If you wait it out, things usually normalize. It seems like it’s becoming obvious that this isn’t normalizing. Or rather, it is, but this headache is now the norm.

I’ve always been one of those people who said that if people walk away from your life then they weren’t meant to be in it in the first place, but at no point had I wondered if maybe it’s the other way. Maybe if you can walk away from someone, they aren’t worth staying for. That maybe it’s not really them, maybe it’s me.

With all these new worries are the normal ones. The worries about school, about holding down a job in the future. It just seems like as much as I want things to get easier and want life to become less complicated, the less it actually works that way.

What I want more than anything is a break. I’m tired in every way. I’m not sleeping well again, which has made all the little things seem so much bigger. I’m tired of fighting all the time. I’m tired of feeling hopeless. I’m tired of pain. It’s not like I just need a nap in the afternoon and everything will be better, it’s like I need a nap from my life.

But that’s clearly not an option, so I continue to fight and move forward in spite of my fatigue.

I have managed for 8 months, and though it seems harder every day, I’ll continue to find a way. I am discouraged, sad, and tired. But I’m not defeated.

Not yet. Not this month.