The truth about my depression

June 12, 2015

Everyone has an idea of what “depression” is. Some think it means the person is suicidal. Others think it means the person is having a lousy day. Some think you can just snap out of it by wanting to snap out of it. Others think it doesn’t really exist.

The truth is, like just about every other health condition, depression is different for different people. That’s why I’m not writing about depression in general; I’m writing about mine. And more specifically than that, I’m writing about the depression I’ve experienced over the last few weeks.

I’ve spent many years keeping an eye on my mental health, making sure that when I feel depressed, I’m aware of whether or not I need help. When I was younger I spent a short time on anti-depressants that gave me all sorts of side effects but didn’t seem to help much. In hindsight, I wonder if that depression was really a symptom of my undiagnosed autoimmune conditions. Maybe it was, maybe it wasn’t. Since then, I haven’t been on medication for depression, but I’ve definitely had periods of depression. Sometimes it lasts hours, sometimes days. If it lasts longer than that, I know I’ll need help, but usually the worst of it is shorter.

This last time around has been different. I wasn’t depressed over a short-term flare, but over a very real, very large setback. Like that setback, it’s lasting longer than an acute flare typically lasts. I’ll write about the setback another time, but suffice it to say, it was, and still is, pretty bad. I lost 3 years of progress in 1 week. It’s been horrible. So it’s no surprise my emotional health would suffer. On top of that, I could feel my emotions swinging around. It’s hard to explain, but I just knew I was having emotional symptoms from the setback in addition to the physical symptoms from this particular setback. I could feel it in the same way I can feel if my knee pain is from too much walking or from an oncoming thunderstorm (even when one isn’t in the forecast, my knee knows it’s coming.) But try explaining that to a doctor!

Sometimes I want to cry for no particular reason. Sometimes I want to cry specifically because I’m angry or scared or sad. Sometimes I just feel sad. Sometimes I think death might be better than living like this. But I’m not suicidal. Those last two sentences seem contradictory to some people, but read them again. I didn’t say I wanted to kill myself. I thought death might be better. I’ve had that thought many times over the years, but in that same abstract way; never in a way that involved me taking action to make it happen. I’ve had it more in the last few weeks than usual, though.

Still, I’m not too worried about this bout of depression. Yes, it’s unpleasant and unfortunate, but so is my fatigue and pain and all of my other symptoms. And like with all of those other symptoms, I’m doing my best to feel better and I’m doing my best to not make things worse. Can I really do more?

I keep this quote over my desk. (If you know whose it is, please let me know so I can credit them.) It’s always apt, but I think it’s especially important right now to reread it constantly.

“I am doing the best I can with what I have in this moment. And that is all I can expect of anyone, including me!”

Do you get depression in relation to your physical conditions? How does it feel to you? Please share your experiences in the comments. And remember, you’re not alone!


What to do when the medication is gone?

May 13, 2015

Like many people with autoimmune diseases, I have a lot of overlapping conditions and many symptoms. My most limiting and disabling symptom right now is fatigue. The fatigue is caused by several things, among them strained adrenal glands. There have been just two things that have helped the fatigue, and I may lose both. Then what will I do?!

First, I have a form of sleep apnea. I got a CPAP machine that helped a lot!!! I loved that thing! Unfortunately, I 2014-04-23 11.03.16
developed a complication and now I can only use it for about an hour every other night. Don’t even get me started on the frustration with that! I’m still working with my sleep doctor on that, but he admits there are limited options for this particular issue, so I may just be stuck. Treating my sleep apnea would help a lot, and might be good enough that I wouldn’t need the other thing that’s worked.

The other thing is an over-the-counter supplement called Isocort, made to support the adrenal glands. It’s been amazing for me! A tiny pill or two makes me able to function fairly well every day! Sure, I’m not about to go jogging, get a job, or clean the apartment, but I can run errands, socialize, and just feel ok. I love it! Unfortunately, they stopped making it. When they stopped, patient communities online were very upset. It was the go-to nonprescription solution for adrenal insufficiency. The prescription solution is a steroid, which causes all sorts of problems for many of us. When production stopped, everyone floundered. They found alternatives with varying success. I tried a form of the most popular alternative. It helps a bit, but not at all like the Isocort did.

I now have a 4-6 month supply of Isocort left. And then what? Will I have to go back to feeling that constant strain to function?

So now I feel stuck. I have some more options, but they feel unlikely to work at best. If Isocort was still in production I wouldn’t be worried. Sure, I wouldn’t want to be on it for the rest of my life for various reasons, but I’d be glad to use it for a few years if it helped. Oh, if only!

I’ll try more Isocort alternatives. I’ll keep working with the sleep doctor. But what will I do if they all fail?


The “Is it worth it?” analysis

June 29, 2014

I went dancing! I haven’t been dancing in ages, and I hadn’t planned on going any time soon. But there was a street party and it looked awesome and I was with friends…. so why not? And when I say “street party” I mean a serious street party. A2014-06-27 20.36.49 major road was blocked off. There were spotlights on roofs and funky colors displayed on city hall. The music ranged from club remixes to motown to disco to whatever else you can dance to. There were congo lines in the street. A beach ball was being tossed around through the crowd. And the weather was cool and pleasant and I felt decent. So why not?

Well, I’ll tell you why not. Because pain. Because fatigue. Because sick body. Yeah, that.

But it looked like so much fun! So I asked myself, “Is this worth it?” And then I continued to ask myself that question every five minutes for the next 2 hours. Sometimes I came close to going home, but then I decided it was worth staying. The question wasn’t whether or not I’d feel horrible later or the next day. I knew I would. There was no question about that. But if I never did anything that made my symptoms worse, I’d never do much of anything (including typing this right now.) Some things aren’t worth the extra pain, fatigue, nausea, etc., but some are. And this was.

The "Is It Worth It?" Graph

The “Is It Worth It?” Graph

At a certain point, I knew I was reaching that point where it wasn’t worth it anymore, so I headed home. The fallout wasn’t too bad. I felt lousy the next day, but not as horrible as I’d have expected. I’m still recovering, but it’s going well. And I have no doubt: it was totally worth it!


When even birthdays are overwhelming

May 16, 2014

The thing about being single is that I don’t have automatic birthday plans. When I’ve been dating someone, we’d plan a day together. Sometimes I went out with friends, but I always had that default date. But when I’m single, nothing happens for my birthday unless I plan it. Well, a couple years ago friends threw me a surprise party. But most years nothing happens unless I plan it.

I remember one year I gathered a bunch of friends from different social circles and arranged for us all to meet downtown for dim sum in Chinatown, and then to hang out for a while afterwards. That was a nice birthday. I would never plan something so high-energy now. Two years in a row I got friends together for dinners out. These days I’m not so fond of going out at night.

I thought about skipping by birthday this year. After all, I skipped New Year’s Eve, so why not skip my birthday? To be honest, I might have skipped it if it was on a weekday. With all of my friends at work, it would have been the perfect excuse. But with my birthday on a Sunday, it just seemed too depressing. I should really do something, right?

A friend is going to be visiting from out of town. I thought about doing something with just the two of us, but she has to head back home early in the day. I thought about inviting one or two other friends. And then I figured, what the hell, I’ll have a freaking party. Ok, birthday gods, you win!

Of course, I’m not up to anything high-energy. The party was going to be a bbq at my parents’ house while they’re away, but that felt like way too much effort. I wouldn’t have the energy to get the food and be the hostess and celebrate. It was overwhelming just to think about it.

So I downgraded it. Now it’s going to be an afternoon thing. We’ll just hang out. If the weather is nice, people can throw around a frisbee in the yard. If the weather is lousy (or just too warm for me) then we’ll hang out in the house and play board games, which I really love. Food will be simple and easy to prepare in advance: chips and salsa, cheese and crackers. My mother wants me to have a gluten-free cake, but I told her I don’t care about having a cake. The truth is, I’m already overwhelmed at the idea of hosting and celebrating at the same time. Picking up a cake that morning would just be too damn much. And I really don’t care enough to go to all that trouble.

I have a plan. A plan is good. It’s a start. Now I just hope I feel well enough to go through with it that day, and that’s impossible to predict.


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