not regular person tired

20 Mar

I know I haven’t updated in a very long time. I try to think of it as a good thing. Having nothing to write about means nothing has changed, which means I’m not getting any worse. Unfortunately, it also means I’m not getting any better either. I have my six month appointment with my rheumatologist next month, so who knows? Maybe I’ll have a remission to report. (But probably not.)

I have another project in some very early stages, so hopefully I’ll be able to redirect my energy into that. I also have two novels waiting to be edited, which I’ve been avoiding, so it’s really time I start to devote myself to that.

In the meantime, I’ve been meaning to do this post for a long time.

Here is a simple fact: FATIGUE is not the same as being tired. The average person can be tired day to day, I completely understand this, but that’s normal. Regrettable and has much to do with the kind of society we live in, but very normal. Fatigue is not normal. Fatigue is more than just being tired and fatigue is not solved by going to bed early one night.

Usually, I need and get between seven and eight hours of sleep. I’m fully functional on this, I’m awake and aware, I can get things done. When a flare kicks in and I’m fatigued, it’s completely different. I’ve tried to explain to people that the kind of tired I get (the same kind of tired all sorts of people suffer from due to a variety of illnesses) is not the same as regular person tired. It’s not feeling the need for a nap in the middle of the day or needing an energy boost in the afternoon. It’s not yawning a lot when it starts to get late. It’s not even yawning a lot in the middle of the afternoon.

Fatigue is a complete and total ass kicking.

It’s waking up in the morning and dreading the very thought of trying to get out of bed because it’s going to be difficult and miserable. It’s going to hurt and it’s going to feel like you’re moving through quicksand. It’s sometimes literally dragging yourself to the shower, supporting yourself on the wall, knowing you can’t call in sick to work because you’re fatigued, since no one understands the difference anyway, and they’ll think you’re faking it or that you’re just tired.

It’s falling asleep standing up in the shower. It’s wanting to crawl back into bed after only an hour of being awake. It’s difficulty getting dressed, making breakfast, forcing the food down your throat. It’s not being hungry because you’re just so goddamn tired. It’s the thought of having to get through an entire day like this enough to make you cry. You can’t even burst into tears, because the thought of bursting into anything is exhausting. It’s quiet and it’s draining and it’s alienating, because who understands you when you try to explain it except someone else who’s experienced it?

No one. Everyone just thinks you’re tired and need to go to bed early.

If you’re lucky and you have a day off, it’s sitting on the couch, unable to do anything. It’s forcing yourself to get up every so often to get water or food. It’s being unable to concentrate on anything. If you’re at work, it’s everything taking twice as long because you have to put your complete concentration on any task or risk completely screwing it up. It’s screwing things up anyway, even things you’ve done a million times before. It’s difficult to laugh things off as a stupid mistake when all you really feel is detached and exhausted and dumb.

Because that’s what fatigue is, too. It’s feeling detached. Nothing matters. The only things that can get through to me when I’m fatigued are my lovely friends and funny TV. I care about nothing else, because I don’t have the ability or the energy to care. I can still talk to my friends, because they brighten my mood and I can still laugh at funny TV, but anything that requires more emotion than that is too much for me. I can’t watch serious or upsetting TV, I’ll just detach from it completely and won’t register a thing.

I stop caring about my writing. This is why I haven’t started editing either novel. I hit a pretty intense period of fatigue right before one got finished and then again after I managed to get it wrapped up. It lasted nearly a month, I couldn’t do anything and now the very thought of going back is just so daunting. My hobbies become overwhelming and I dread doing them instead of enjoying them like I usually do. Social obligations become torture, not because I don’t love seeing my friends and family, but because I feel like I’m hearing everything through cotton shoved into my ears. I feel tired and dumb and like I’m no fun.

Fatigue is finally dragging yourself home at the end of the work day and literally falling onto the couch and being unable to move. It’s hard to eat, hard to care about food and hard to even register whether or not you’re hungry. It’s feeling your eyelids beginning to droop before 6:30, it’s struggling to stay awake because going to bed before 7pm is just ridiculous. It’s allowing yourself to crawl into bed at 8 or 9, thinking you’ll watch some of that funny TV that keeps you going in its way, then falling asleep ten seconds into an episode. It’s sleeping for ten, eleven, twelve hours and still not feeling rested.

Fatigue is not cured by sleep. During my worst periods of fatigue, I can sleep for twelve hours, then nap during the day and still not be rested. I can sleep up to sixteen hours and still be exhausted.

It’s feeling like an asshole because you can’t do things. It’s feeling like a disappointment because you try or you say you’ll do something and then you fail at it spectacularly. It’s feeling like a bad person, a bad wife, a bad friend, a bad daughter, a bad employee, because everything is just so goddamn hard.

And then one day, if you’re lucky like me, it’ll just lift. And you’ll just be normal person tired again.

But seriously, the next person who tells me they know how I feel because they’re tired? Might find themselves cut up with a sword so I can compare their wounds to my paper cut.


new names for the same old thing

21 Oct
For years now — as many as seven, maybe, but definitely for at least five — I’ve been getting weird red bumps on my fingers and the soles of my feet. They don’t hurt usually, but they’re kind of puffy and as they heal and disappear, they get a little itchy. Sometimes, if they’re really bad, they hurt a little, making typing difficult and walking barefoot through my house a weird experience, but for the most part, they don’t interfere with my life at all.
I mentioned them to my rheumatologist during my last appointment, although I didn’t actually have any inflammation at the time, so he had nothing to look at. He said he suspected it was probably due to my lupus and we’d revisit it if they ever got bad, but I wanted to know what it was. When I was sixteen and obsessed with Buffy, I read one of those books written to supplement the series and in it, Joyce had cancer. The books are always so cheesy, but there was one line that has stuck with me since I read it and I think it applies to a lot of my medical business. “If you can name the monster, you can fight it.” This has always felt very true to me. I’d much rather know what’s wrong and understand my options than spend all my time wondering.
The last time the bumps flared up worse than usual, I took pictures. I brought them to my rheumatologist appointment yesterday and he confirmed vasculitis, which was what I suspected after googling ‘red bumps on hands and feet lupus’. I should know better, I shouldn’t turn to google, but sometimes I can’t help myself.
His advice was to just watch and see. I’ve had them for five years and they don’t seem to be troubling me any more or less than before, so it’s the right advice, I’m sure. He says it’s secondary vasculitis, meaning it’s not a disease on its own, it’s caused by something else, in my case, lupus. He also said my blood tests show I’m not in remission, my lupus is active, which didn’t surprise me either. I don’t feel like I’ve had a remission period at all since I started showing symptoms all those years ago.
I’ve been on medication for two years now and that knowledge, like I said, doesn’t surprise me, but it’s a little disheartening. I was hoping with medication and exercise and a better diet, I’d be able to control it, but that doesn’t seem to have happened. I’m not even sure what I want. My symptoms are generally mild. I’d like to be less fatigued, but I can handle it. When I get enough sleep, I’m generally in pretty good shape.
But I want to be able to fight it.
The two year anniversary of being diagnosed passed two weeks ago. I didn’t even register it. That’s probably a good thing, the anniversary of being told I have an immune system disease probably isn’t the sort of thing one should be giving a lot of mental real estate to, but at the same time, it’s a strange milestone to have missed.
In some ways, I feel like I’ve had this disease for a lot longer. I mean, I probably have. I’ve had the vasculitis for at least five years. I’ve had joint pain for most of my life, culminating in giant swollen knees for no reason seven years ago. And then five years ago. Then four years ago. Luckily my knees haven’t blown up like that since then, but it’s just proof that the symptoms are there. They’ve been there for a long time and I’ve made it this far. I’ve been treated for only two years out of at least seven years of this disease.
There are more aggressive treatment options, but at this point my rheumatologist doesn’t think that’s a step we need to take. I might not be in remission, but he considers my lupus well controlled. Sometimes it’s just hard to believe. I know there are people who have the same condition and are in much more difficult situations. Organ involvement, the type of fatigue that just crushes you, debilitating pain. I know I’m lucky to be able to get up in the morning and go to work. I’m able to go out with friends, go to shows and movies and get comfortable on the couch without having to worry too much about what my joints might do next. But sometimes it doesn’t feel like luck. Sometimes I just want to be rid of it and I know that can’t happen, I know there’s no cure, but the treatment is supposed to work.
Why isn’t it working for me? Why aren’t I in remission?
Still hoping for it one day. Still doing my best to get there by following my treatment plan, eating well and exercising as often as I can. I’ve improved on that one since I last wrote anything, usually getting on the elliptical for a half hour four or five days per week. I’m trying.
And I’m still hoping.

I am lucky – and I need the ACA

7 Oct

I’ve been away for awhile and I swear I’m going to post again soon, but for now, READ THIS. I’m lucky enough to live in a country where I don’t ever have to worry about being able to afford my health care, so I can’t even imagine how scary it would be to have a chronic illness and never know for certain how future care might be obtained. Reading this helped me better understand how health care in the United States really affects people who need it.

A Trick of Light


Trigger warning: This post contains descriptions of chronic illness.

I remember the days before my sister Emma was diagnosed with ulcerative colitis, an autoimmune disease that attacks the GI tract. We didn’t know what was wrong with her. It was terrifying. Perversely, discovering that she had a severely unpleasant chronic disease that increases the risk of all kinds of fun complications was a relief – we knew what the problem was. We could start to do something about it.

That’s the key here: We could do something about it. We could afford to. For us, it wasn’t a heart-rending and potentially bankrupting choice. We were lucky. She was lucky.

Normally this is a blog devoted mainly to writerly things, but right now we’re at a crucial point in how health care is dealt with in the United States – a point in time with immensely important implications for writers and…

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i’m tired of waking up tired

26 Jul

“Fatigue is [commonly] the main, or only, active symptom of a person’s otherwise well-controlled lupus.”

I would catergorize my lupus as well controlled. I always hate saying this, because I’m irrationally afraid it’ll jinx me, but I have no organ involvement, no major joint pain. I do still have muscle pain and spasms and occasional joint pain, but it’s all relatively easy to handle.

But, good Christ, am I ever exhausted.

Though I have anxiety and am a horrible cynic, I’m also a fairly happy person. I have the usual frustrations of anyone else, but generally, I like my life. I’m lucky in a lot of ways. I have good people around me, I have time to spend on my writing, and although right now I’m a little overwhelmed with all I have to get done, I know it’s mostly because I’m getting married in a month and once that’s over, things will settle down.

Fatigue kills that. It completely kills my happiness. I wouldn’t say that fatigue brings depression, at least not for me, but it certainly makes it hard to get excited about anything. I’ve had some great writing days lately, banging out between 2000 and 5000 words, which is excellent. And now today, after days of battling this intense fatigue, I’m just done. I can’t get excited about writing, about anything really, and I know it’s because I’m tired to the point of wanting to just lie down and weep.

This is after a solid eight hours of sleep. I don’t have trouble falling asleep and I usually only wake up once a night to go to the bathroom. I sleep well, but it doesn’t matter. Sleep never helps fatigue.

I feel like I should be happy it’s my only symptom that really seems to make itself known. I should consider myself lucky that things aren’t worse and I do, but sometimes it’s really hard to appreciate everything else when all I want to do is sleep. More than that, I never truly understood what fatigue meant until I had it.

I used to think I was so tired, but I know now that was just the regular kind of tired everyone gets. This is different. This is more than just being tired.

I want to be grateful for all that’s going well, but mostly I just want to sleep.

more anxiety!

6 Jul

This is one of those posts that’s embarrassing to write, but if I’m going to chronicle this stuff, I might as well be honest about it.

When I woke up at five in the morning, there was a pain in my chest so debilitating that for a long moment, I couldn’t move. The pain subsided, I turned over, found a more comfortable position and went back to sleep without worrying about it much. It would be gone when I woke up, I told myself. Everything would be fine.

My alarm went off an hour and a half later and the pain was still there. At five in the morning, I’d still been half asleep, which sometimes works as a barrier against anxiety for me, but now that my alarm had gone off, my brain took it as a signal to panic.

My chest hurt. It was different chest pain than normal, it was weird, it was wrong, I was immediately sure I was having a heart attack. I got up, went to the shower, finally decided to check my pulse after a good five minutes of panicking. I found it elevated. SURPRISE. That’s what anxiety does to a person, but given that I was well on my way to having a full blown panic attack, that logic had a very hard time permeating anything.

The thing about living with anxiety AND a chronic illness (which I have to assume is very common) is that the anxiety can make you doubt every little thing. It’s chest pain, my left arm feels weird, I have an increased risk of heart attack, and I’m panicking to the point of hyperventilation, but I’m not going to go to the ER. I live in Canada, I don’t even have the excuse that I can’t pay for it. I don’t have to. But I remember the last time I went in with chest pains that were actually just costochondritis paired with the mother of all panic attacks. I remember how a good number of the health care workers treated me.

(This is not to bad mouth health care workers. The ones who were rude to me didn’t even amount to half of the people I dealt with. The vast majority of doctors and nurses I dealt with over that horrible three day period were kind and helpful and good to me. Some were the opposite.)

I remember one nurse rolling her eyes while she looked me in the face and said, “You probably just pulled a muscle.” Yes, okay, maybe I did, but I’m having chest pain and I HAVE AN INCREASED RISK. A SIGNIFICANTLY INCREASED RISK. I don’t have many of the other risk factors (I don’t smoke, I eat pretty well, my blood pressure is on the low side of normal, I exercise… not as much as I should.) but I do have one and it’s kind of a big one, but she was so dismissive of me. It made me feel so stupid. In the middle of a massive panic attack, she managed to get in there and make me feel STUPID on top of it.

I don’t want to feel that way again. And that, I know, is an extremely stupid reason not to have myself checked out if something is wrong, but through doing a little reading, I’ve found it’s fairly common. Because 55% of women are misdiagnosed MID-HEART ATTACK and sent home, they often resist returning, even when it’s become clear they need help. More damage is done to their hearts as a result, all because they’ve been dismissed and told they’re worrying about nothing. Mid-heart attack.

No, I wasn’t having a heart attack at the time, but knowing my risks, I’m still glad I went.

Anxiety makes you doubt everything, especially yourself. You’re not reliable, because your mind isn’t in the right place. I’ve told myself that so many times in an attempt to listen to what other people are telling me.

It’s an extremely sharp, extremely dangerous double edged sword.

On one hand, my anxiety makes me believe everything terrible is the only truth there is. I am going to die, my heart is about to explode out of my chest, I’m beyond help. Death is imminent.

On the other hand, anxiety makes me doubt my own knowledge. Am I really going to die or is it just the anxiety telling me that? Is my heart really about to explode out of my chest or is that the anxiety making it beat too quickly? Am I really dying or is anxiety just telling me I am?

But then it comes around again. Maybe it’s just my anxiety, but maybe something really is wrong and convincing myself it’s just anxiety is ignoring a major problem that could cause serious damage. This can go around and around, my anxiety waxing and waning until I do one of two things: Deal with the anxiety naturally, which is super hard at work, or take an Ativan, which is what I did today.

Unless I can be totally alone/around someone I trust, relaxing the natural way is extremely hard for me. I need to be able to be quiet and concentrate on my breathing for twenty minutes or more, usually. And it works. It calms me down. But I can’t do that at work.

I don’t take Ativan often, (My doctor prescribed me thirty pills nearly two years ago and I think I still have 23 pills left. She also lectured me about the chances of addiction, which left me kind of terrified.) but sometimes it’s necessary. I was having a panic attack at work, there was a good chance it was going to descend into a major attack, the kind that leaves me convinced I’m going to die, the kind that takes me to the hospital. So I took a pill and most of the time when I take a pill, I’m going to sleep or near sleep, so I don’t feel it work.

Today, I was really aware of it. One moment I was working, but still thinking about how my chest felt. The next moment, I was thinking about something else and I hadn’t even realized I’d stopped worrying about my chest pain. When the thought DID arise, my brain greeted it, turned it over, let it fan a little flame of anxiety in my chest, then decided it wasn’t interesting and cast it aside. The flame of anxiety died with it. Ativan doesn’t fix everything, but it calms both the physical and mental symptoms of anxiety long enough to me to return to normal. To find my logical brain and actually listen to it.

It also helped me realize that the pain wasn’t as bad anymore. That it was made worse by wrapping my arms around my midsection and squeezing, which puts pressure on my diaphragm. Because, see, it’s not enough that I have Lupus and kidney stones, I also have a problematic digestive tract. My doctor tentatively calls it IBS, I don’t care what it’s called. I just know that it means my stomach gets bloated once every few months and it presses against my diaphragm and usually caused a pain similar to this.

I spent all morning in pain and burping. The two major symptoms I get when my stomach is acting out like a spoiled child, but my brain never went there and stuck there until I could clear it of all the anxious thoughts.

I’m good now. I’m not sick, I’m not in pain and, looking back, I realize my reaction was irrational, but the thing with anxiety is that it’s extremely difficult to control. Looking back it’s always clear that nothing was really that wrong, but it’s impossible to tell yourself that mid-attack.

(And the first person who tells me to just stop being anxious gets a punch.)

more things that scare me

25 Jun

In my last entry, I promised an entire entry dedicated to the things about Lupus that scare me. I’m sort of hoping it’ll all be therapeutic in a way, that I’ll be able to stop being scared of these things, but let’s be honest, THAT PROBABLY WON’T HAPPEN. My brain doesn’t respond well to logical things most of the time.

Regardless, let’s do this.

1) Heart attack.

Lupus patients are five times more likely to have a heart attack than someone else in their age group. This statistic has been given to me multiple times and I seem to cling to it for no good reason. I haven’t done any research into it, which is both kind of stupid and a brilliant form of self preservation. Maybe if I did research I’d learn that there’s something specific that increases this risk (I vaguely recall reading something about steroids being the cause once, but I might be imagining that.) and it would reduce my fear. Or maybe I’d learn there’s not a damn thing I can do about it and all the cardio in the world won’t change that statistic. Currently, it’s a little better living somewhere in the middle. Scared of the possibility, but content in the knowledge that I’m improving my heart health by going on the elliptical.

This one might be easier to deal with if I didn’t have chest pains most days. I’ve mentioned costochondritis before, which is pain and inflammation in the chest wall. It’s not life threatening, but when a person starts experiencing intense chest pains for the first time, it’s pretty scary. Even though I know this is what I have, even though my heart has been tested, even though I’ve worn a holter monitor, even though it’s been nearly two years since they started and if I was having a heart attack, I’d be dead by now, I still worry. It’s a hard thing to talk yourself out of when we’re told all the time that chest pains mean something is wrong with your heart and you need to get your ass to the hospital RIGHT NOW. I’m working on it. At least I don’t lie awake at night anymore, paying more attention to my heart beat than I need to.

2) Something happening to my hands.

This is kind of a big one, especially since I’m having a lot of hand pain right now. I spend a lot of my time on a computer. I work at a computer and when I’m not at work, I’m often writing. On my computer. There’s nothing in the world I love doing more than writing and I keep doing it in hopes that, maybe one day, I’ll stop being such a goddamn coward and do something toward getting my stuff published. I have a pretty huge arsenal of short stories, a couple novellas and two completed novels under my belt with a third hovering at around 30,000 words right now. (It would be more, but long story short, working on a music video pre-production has sapped my creative energy for everything else.) I LOVE writing.

If something happens to my hands, if I can’t type anymore, that would make writing a lot more difficult. Maybe not impossible, but difficult, and that scares me a lot. It terrifies me. I’ve taken steps at work to help the hand pain; exercises, breaks, asking for a special mouse pad with wrist support, but it still scares the crap out of me.

3) Kidney complications.

So I already have kidney stones. I already have mysterious pain in my side that my doctor has long since attributed to said stones, though my urologist doesn’t support this. Either way, I’ve had issues with my kidneys for a long time and the kidneys are the most common organ to develop complications related to lupus. I’m constantly on guard, worrying about any new pains, worrying when my bladder seems to hurt, worrying, worrying, worrying.

Kidney stones probably don’t mean I’m more likely to have kidney complication, but already having issues just makes me feel like it’s that much more real. This could happen to me, because something already has.

4) Not being able to work.

Okay, I don’t love going to work every day. I definitely don’t love getting up at 6:30 in the morning so I can get on a bus in time. I have bad days. But generally? I like my job. I’d love more free time, because I spend so much of it writing and I like playing video games, but my job is a pretty good one and I’m happy with it.

The idea of not being able to work really scares me. It’s a huge loss of independence. The idea of having to go on disability because I’m in too much pain isn’t something I love. I’m not rich, but I make enough money to get by and that’s important to me. I wish I could contribute more to the household than I already do and the idea of having to contribute even less fills me with dread.

There are other things, things that have probably crossed my mind at one point or another, but those are the major things that scare me about having lupus.

anxiety and lupus

22 May

I talk a lot about pain and the changes I’ve made to my life. I talk about my diagnosis and my pills, the way I eat, the exercise I try to do. (Hey, three of the last four days I’ve gotten in a pretty good workout, so hopefully things are looking up there.) I talk about the things that irritate me (of which there are many, I know, I’m an irritable person) and the misconceptions and questions that bother me, but I don’t talk a lot about the things that scare me.

I’ve mentioned before, I’m an anxious person. The anxiety got bad around age nineteen or twenty, though I can’t remember when, exactly. It got worse when I was about twenty-four and it reached its peak (or what I hope was its peak) between twenty-five and twenty-seven. I’m twenty-nine now and I’m long since resigned myself to the fact that this probably is never going to go away. I’m not medicated beyond rescue meds and I’m okay with that, because I don’t feel it’s necessary, but there was a time when I think I probably needed to be. I could barely function. I cried all the time. Most days, I was on the verge of tears and sometimes I wonder if having Lupus has actually helped me deal with it better.

Lupus gives me something tangible to lay my anxiety on. I’m allowed to be anxious because I have LUPUS! It makes sense! People who understand Lupus can completely understand why I would be anxious about it. It gives my anxiety something to focus on and, because I’ve learned a fair bit in the past year and a half, I find it easier to talk myself down from Lupus related anxiety than I have with anything else. Because it’s easier to talk myself down from this fixation, I’m finding it easier to deal with other fixations when they pop up.

But the truth is that I still get scared. I still get anxious.

Anxiety is normal, but anxiety that’s problematic is hard to describe to someone who’s never experienced it. A mild panic attack is still awful. I can function through them and even pretend they’re not happening, but it feels like my throat is being squeezed, like there’s a weight on my chest. I struggle to breathe, I never feel like I can get enough air. Irrational thoughts feel like perfectly logical ways to describe something. I remember trying to explain to a doctor once what it felt like when I was breathing in during a panic attack. It feels like the air is all escaping somewhere along the way. I breathe in and it feels like there are tears all along my airway, that it escapes into my sinuses and my mouth, under my tongue and inside my body and none of it makes it to my lungs. During one of my worst panic attacks, I became convinced of this. The air was escaping somehow. It was just leaving me.

My tongue feels swollen when I have panic attacks. I start to think it’s preventing me from breathing. I feel like I can’t swallow, like my throat is swollen, too. This is a mild attack, where most of my symptoms are physical. 

These I can control.

Full blown panic attacks are something else entirely and I wouldn’t wish them on anyone.

All the physical symptoms mentioned above are present and magnified. My heart races upward of 140 beats per minute. It pounds. When I’m in the midst of the worst panic attack, I can lift my shirt and see my heart beating wildly under my skin. Which, of course, makes me panic more. I can’t fall asleep no matter what I do. As soon as I start to drift off, I jerk awake, gasping for air and I become convinced I’m going to stop breathing if I fall asleep, which makes me fear sleep.

I become convinced I’m going to die.

Even in the midst of a panic attack, knowing this is a major and one of the most recognizable symptoms, it still feels real. I’ve only ever had two panic attacks this bad, but in the middle of them, death feels inevitable. Not that I want to die, not that I’m suicidal by any means, but I know it’s coming for me anyway. It’s coming for me, I’m going to die and there’s nothing I can do about it. And it’s not the fear of death coming one day, it’s coming for me right now. I’ve never felt so convinced of anything as I do of my own impending death in the middle of a serious panic attack.

I can’t describe how helpless that makes me feel. It’s a complete lack of anything resembling comfort. All I feel in that moment is lost and alone and terrified and there’s nothing anyone can do about it.

Unless they give me an Ativan and then I’ll just fall asleep and wake up feeling better.

That sounds like such a simple solution, but until last year, I’d never even taken a rescue med before. I had been in this all alone until a doctor in the emergency room recognized my wildly beating heart and palpitations for what they actually were and drugged me. I don’t remember his name, but he treated me with such kindness and understanding that I’ll never forget him. The doctors around him were all worried about my heart (Yay for Lupus?) and had me hooked up to every machine imaginable, but he knew what it was. He gave me a sedative and it was better. I hadn’t slept in thirty-six hours, I’d been in a state of extreme panic nearly that entire time and twenty minutes after he gave me the pill, I was asleep.

I woke up the next morning feeling better and stupid.

I felt like a waste of resources. I felt like I’d wasted the doctor’s time, the equipment used to check my heart, that the doctors and nurses who’d helped me all went away thinking that I was just a screw up who couldn’t handle her emotions.

I know that’s probably not the case, but with the way many people still treat depression and anxiety and every other mental illness in the world, it’s hard not to feel that way. It’s hard for me to say that I have an anxiety problem. It’s hard for me to write all these things that happened, to try and capture how I felt at the time, because looking in from the outside, it seems completely irrational. If it seems irrational to me, I can’t imagine how it seems to a person who’s never experienced anything like this. I’m still afraid of saying this out loud a lot of the time, because I know people will judge me.

I’ve had people who love me very much, whose love I never doubt, ask me why I can’t just stop being anxious. They’re not trying to be hurtful, but it does hurt. It makes me feel like they think I’m choosing to be this way or that they just don’t believe it’s real. I never know how to explain it to them, because it’s such an experience based inside a person’s head that to express it outside of yourself feels impossible.

I guess the last thing I want to say is that this is a real thing. This isn’t something I created or made up. It’s not something I make out to be worse than it is. It can’t be cured by a different diet or by exercising more. If I could choose to make myself better, I cannot say this emphatically enough, I would. If there was something that I could do to make me stop feeling the intense anxiety, I would do it in a heartbeat. But it isn’t that simple. I didn’t choose this. I do my best to handle it and I’m really proud of how far I’ve come, but there’s still a problem for me and maybe there always will be.

I was going to do a post about the specific parts of Lupus that scare me, but this seems long enough as it is. I’ll leave that for next time.

diet and exercise

28 Apr

Okay, so I’ll admit it, I still suck at getting enough exercise. We bought an elliptical a few months ago and I use it… once or twice a week, which isn’t bad, given that I’m pretty lazy most of the time, but it’s still not as much exercise as I should be getting. I’m working on it, though, I’ll get there.

But I’ve talked a lot about how I changed my diet when I was diagnosed. For some reason, that was easy for me. Maybe it’s because my diet was fairly healthy to begin with, but I was less concerned about my heart health at that point. I ate pretty well, but I also didn’t worry much if I had a bad day or two. (I still don’t, really, because while I prefer to eat healthy, there’s no point in stressing about a day when I accidentally eat McDonald’s twice. And yes, this is a real example that may have happened recently and it really was an accident, I swear.)

I also don’t measure things out or stick to certain portion sizes. I eat enough to fill me up, but try not to eat more than I need either. 

An average day for me looks something like this:


– Almond milk

– Oatmeal Crisp Vanilla Almond cereal

– glass of water and all my freaking pills



– Oikos vanilla greek yogurt

– Strawberries and raspberries

– Granola

– A piece of Babybel cheese (my favourite!)



– Fish, usually pan fried in olive oil and breaded in ground flax seed

– some kind of steamed vegetables (I prefer asparagus, zucchini, green beans or broccoli)


I drink A LOT of water throughout the day. I don’t often drink much other than that. Sometimes I’ll have tea, very rarely I’ll have some kind of juice or smoothie, but it’s mostly water. For snacks, I love, love, LOVE hummus and any kind of vegetable. Carrots or snap peas, usually. I also eat those SunRype fruit bars for snacks as well as various fruits. Bananas or raisins are really common for me.  

When I write it out like that, it doesn’t seem like a lot of food, but I certainly never go hungry and I don’t lose weight. My weight has been consistent since I was initially diagnosed. I lose my appetite when stressed and I was obviously incredibly stressed right after my diagnosis and I lost nearly twenty pounds without even trying. I gained about ten of that back and I’ve been sitting around that same weight for nearly two years now. So while that list doesn’t seem particularly extensive, it keeps me going. It keeps me happy and healthy.

There’s a lot of variation on this, obviously. I don’t eat the exact same thing every day. I’m a big fan of The Looneyspoons cookbooks, which is sometimes painful for me to admit, because their TV shows are incredibly annoying. But their recipes are amazing, so I suck it up and deal with it for the delicious food. I don’t eat a lot of red meat anymore, which is hard, because I love steak. I do still eat deer, because I love it and I don’t have it that often and it’s in the freezer, so what am I supposed to do, just NOT eat it? Nope. I don’t eat a lot of bread or white rice. I avoid things that are high in sugar and sodium. I also really love salads that are loaded with things. Spinach salads are my favourite, which is too bad, because spinach is high in oxalate, which is what causes my kidney stones, so I’m technically not supposed to eat that very often, but… oops? A lot of chicken and fish, a lot of fresh fruits and vegetables. It’s far from perfect. I slip up a lot still or I’m sure I eat things I think are healthier than they actually are. (Pretty sure my cereal is high in sugar, but it tastes good and I’m not sick of it, so I’ll keep on with it.) And whenever Dale says, “Hey, we should order a Hot Lovers pizza,” I’m not going to say no.

(Dale and Brianne are moving to Peru. No more Hot Lovers pizza for awhile, I guess. Sadness.)

I really love food. But I’ve been trying to eat healthier for a long, long time. I used to eat A LOT of candy and about four years ago, I tried to feed all my candy cravings with fruit, so now I mostly crave fruit whenever I want something sweet. It was a struggle, but I managed to change my habits, so that made adjusting my diet further a lot easier than it may have been otherwise. I love food a lot and I love food that tastes good and I’m not going to give up having red curry soup from my favourite Thai restaurant. But I’ve also learned how to make delicious food that’s pretty good for me and I’m proud of that.

Now if I can just make myself get on the elliptical more often…


22 Apr

I’m exhausted.

But this is nothing new. I’ve battled exhaustion for as long as I can remember and for most of my adult life I thought it was normal. I thought all adults felt this tired all the time. I thought it was perfectly regular to be overcome by exhaustion headaches on a regular basis, to be asleep by ten at night on a good day and eight on a bad day. I thought a good seven or eight hours of sleep probably left most people feeling terrible still.

Then there was Lupus.

I don’t know, on one hand it’s kind of nice to finally have a reason and to realize that it isn’t normal. That I’ve been fighting something for a long time now and that it’s to blame for me wanting to sleep for ten hours a night. When I spend a day stifling yawns and nearly nodding off during my lunch, I can blame the ever present LUPUS. (Seriously, when it comes to problems with my body, the Lupus is a great scapegoat.) But having something to blame doesn’t make it suck any less.

Fatigue is one of the most common complaints in people with Lupus. So that’s great. Everyone who has Lupus totally gets what I mean. But there’s nothing that can be done about it. I’ve read studies that link it to kidney and liver complications, but I haven’t had either of those, so that’s out. Another study that links it to the depression and anxiety often experienced by people with Lupus and I’m sure that’s true, because I’ve been depressed and anxious before and I know how appealing sleep is during the extreme lows. But I’m good right now. I’m busy, but relatively happy. My mental health is on a good streak right now, so it’s not that.

But I’m still always tired. I wake up in the morning and it’s hard to drag myself out of bed. It never used to be. I remember being a morning person at one point. I’m usually okay by the time I leave for work and the walk to the bus helps, but then I’m on the bus and it’s warm and the motion is soothing and I almost fall asleep. Work isn’t much better. Not because I’m not busy, but because I am. The harder I have to push myself, the more conscious I am of how tired I am. I get headaches around midday, especially if my lunch is later than usual. I want to sleep. I want a nice, long nap. But instead I keep working and then I go home and even though I really want to sleep, I make myself stay awake. I eat dinner and get things done and all the while, I’m thinking about going to sleep.

My bed is amazing. It’s soft and warm and comfortable, it’s the best place in the house. But I shouldn’t want to spend all my time there.

It can be really frustrating. There’s so much I want to do, so many things I would like to fill my time with, but sometimes my body just won’t let me. I want to be more active and I’m very slowly getting there, but there are days when it’s really, really hard. There’s not much that can be done about it. I’ve done a fair bit of reading, trying to figure out if there are solutions and both the internet and the rheumatology world seem to be at a loss. It’s just one of those things I’ve have to deal with.

So it’s 9:24 and I’m going to go to bed.

sad and stressed and ben wyatt

3 Apr

Things are hard right now.

Not all things. There are some things that are great, namely Chad and the fact that I’ve recently discovered how delightful Parks & Rec actually is, as well as how HORRIBLY delightful Battlestar Galactica is. I’ve played a lot of Bioshock, bought Bioshock Infinite, was saddened to discover it causes me to feel extremely motion sick, then played it excessively anyway. I’ve been reading a lot more. Wedding planning is going fairly well. House stuff is coming together, even though it’s been a lot of work. (For Chad, not for me, because I offer to help and he tells me to go away, but in much nicer words than that.)

But there are other areas of life right now where I feel extremely stressed. I won’t go into more detail than that because once something is out there on the internet, it’s sort of hard to take it back, but I’m sure people can figure it out, given all the awesome stuff I mentioned above.

The thing is, Lupus flares can be caused by stress. And mine definitely are. They’re also made worse by hormones, which is super great when you’re a lady and you get an amazing week of hormonal fun already. Like, okay, body, thanks a lot. I already get the worst cramps in the world, so just go for it. Add on some horrible chest pains and the feeling of ground glass in my joints. Can’t make it any worse, right? (False. Glass in the joints feeling is DEFINITELY worse than just cramps.)

I sort of got derailed there. Flares can be caused by stress and right now, I’m really stressed. It’s frustrating, because I shouldn’t be stressed. I should just let this go and pretend it doesn’t bother me, but it’s hard. And because it’s hard for me to disconnect, I get stressed and because I get stressed, I’m causing flares. Right now it’s not too bad. I’m much more exhausted than usual and my joints are bothering me, but it hasn’t gotten to the point where I need to take time off.


It might. I can see the situation slowly veering in that direction and it’s not what I want, but I don’t know what else to do. And because I don’t know what else to do, I’m feeling very sad. I don’t like feeling sad. I’ve had trouble with anxiety and with minor depressive episodes for a long time, so when I start feeling especially sad, I worry more, because back sliding into that is just the very last thing in the world I want. I like being happy. 

There was a point to this, but I lost it somewhere. Flares suck, being stressed sucks, I like being happy.

Ben Wyatt.