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!

3 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Limitations, Pain, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

Easy things that aren’t so easy

April 24, 2015

When you have chronic pain, chronic fatigue, and other chronic symptoms, there are some everyday movements and actions that most people assume are easy, but which really aren’t. They’re painful, draining, and sometimes impossible.

I was reminded of this yesterday when my mom called. I told her I was in recovery mode from the activities of the day before. She knew I was resting, but she didn’t seem to understand that just talking on the phone was exhausting. I was supposed to be resting, so I shouldn’t have been talking on the phone, but she thought of it as a low-energy activity. In fairness to my mom, I should have been more clear about my limitations; that’s my responsibility and no one else’s. But it did make me think about how differently we perceive things.

So here are just a few things that others think are easy but which aren’t for me. And of course, it varies from day to day. Some days sitting up is no problem. Others it’s impossible.

  • Sitting up.
  • Cooking.
  • Walking down the street.
  • Walking around my apartment.
  • Keeping my eyes open.
  • Standing up.
  • Breathing.
  • Reading.
  • Eating.
  • Sitting down without letting my body just drop to the sofa/chair/toilet.
  • Talking.
  • Singing.
  • Concentrating on anything.
  • Drinking water.
  • Showering.
  • Watching a movie and following the plot.
  • Typing.
  • Thinking.
  • Moving my hands.
  • Keeping my hands still.

What can you add to this list? Please share your ideas in the comments. Then share this with your family and friends to help raise some awareness.

1 Comment | Educating, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Playing Musical Doctors

March 23, 2015

There’s a child’s game that’s really quite simple called Musical Chairs. The children gather in a circle around a bunch of chairs. Music plays, and the children march in a circle around those chairs. When the music stops suddenly in the middle of a song, everyone rushes to sit in a chair. The catch is, there are fewer chairs than children, and whoever doesn’t get a chair is out of the game. (Each time someone leaves the game, more chairs are removed from the circle.) So you always wonder who will get a chair and who will be left standing.

That’s how my calendar went with doctor appointments last week. I called it Musical Doctors.

When you see many specialists, and each require multiple checkups and followups each year, sooner or later this kind of thing is bound to happen. For me, the game started this time when I needed to make an appointment. A few days before I’d been thinking thinking about how nice it was not to have any doctor appointments lately, how much less stressful it felt, how much more time and energy I had. Then I tried to make an appointment and discovered why I’d been enjoying a blissful break in the doctor hecticness: they were all piled up in March and April! In 3 weeks I had 5 appointments scheduled, with 2 more a couple weeks after that. I often have appointments grouped together coincidentally, but 5 in 3 weeks is a lot, even for me! And suddenly I was scheduling a sixth! It wasn’t easy fitting that sixth one into my schedule, but I made it work.

I was dreading the 6 appointments in 3 weeks. It was overwhelming just thinking about it! But then I took a closer look at my calendar and realized I had an unfortunate conflict. The appointment with the hardest doctor to schedule, Dr. T, happened to conflict with a support group I’m in that means a lot to me. Not only that, but this was a special meeting of the group. It had taken me 6 months to get this appointment. The last time it took me 8 months to get an appointment. Still, I called the office and asked to be put on the cancellation list, just in case.

But I wasn’t putting all my eggs in that basket! I emailed Dr. T and explained the situation. I was clear that I would keep this appointment if I had to, but if it was at all possible to move the appointment, even if it meant waiting a few more weeks, I’d really like to do that. A few days later, I got a call from his office. They offered me another time slot, and I was so excited. But when I pulled out my calendar, I saw that I already had an appointment that day. This was the only day they could offer me. The other doctor, Dr. C, is also hard to schedule, but not as hard as Dr. T. Technically I had time to do both the same day, but I knew I would haven’t have the energy for both. I figured I’d take my chances. I took the new appointment. Now I could go to my support group!

Ok, it was time to call Dr. C. She was booking into July (and this was mid-March.) I could wait if I had to, but it wasn’t ideal. But wait, they’d had a cancellation later in April! This would mean seeing Dr. C the day before seeing another doctor, Dr. H, and each involves a lot of driving. Still, it seemed like the best possible option. I took it.

It was an odd set of coincidences, but somehow it seems to have worked out. My biannual dental appointment, my quarterly rheumatology checkup, my annual determatology checkup, and several followups all just happened to fall in the same 3 weeks. Such is life when you have multiple chronic illnesses.

After some juggling, each doctor is now in a time slot. And who’s “out” like in the game? I’m not sure, but I think it’s me.

2 Comments | Fatigue, Frustration, Healthcare, Medication, Rants | Tagged: , , | Permalink
Posted by chronicrants

Vagina vagina vagina

January 9, 2015

I ate an incredible chocolate chip cookie today. It gave me a lot of pleasure. It was just delightful.

I’ll get back to the cookie in a bit.

Like many people, I have two hands, two eyes, a mouth, a liver, two lungs, a heart, two legs, and many other body parts including, yes, a vagina. So if I can talk to a doctor, a friend, an acquaintance, or a stranger about pain in one of those other body parts, why is it considered taboo to discuss pain in my vagina or any other body part involved in procreation?

I don’t personally have vaginal pain (aside from the occasional yeast infection, etc.) but if we discussed these things more openly, it wouldn’t have taken me years to find out that the blood clots I got with my period weren’t normal. And while I don’t happen to have pain in my vagina, vulva, or related areas, plenty of others do.

The taboo seems to trace back to pleasure. Apparently, the problem with discussing vaginas and penises has to do with the pleasure we get from them. I got a lot of pleasure from that cookie this afternoon, yet it isn’t socially inappropriate for me to talk about my mouth. There’s just no logic to it. Apparently sexual pleasure is to be shamed while all other pleasure is acceptable, at least in my culture. But who does that help? I see absolutely no reason why that should be the case.

Many people of all genders express discomfort when discussing genitalia. I don’t get it. Every single one of us is here as the result of sexual organs. Think about it: would you exist if no one on the planet had a uterus? The vast majority of us are here because of a penis and a vagina, even if they never came into contact with one another. It amazes me how many men think vaginas are only for sex; unless they were born through C-section, they once came out of one!

Today I learned that a friend has vaginal pain. She had never mentioned it before, referring only to more socially accepted forms of chronic pain. She said she’d probably never discuss it again. But why should that be? And the topic of how pain in other parts of the body affects sex really needs to be a post all its own. If you have chronic pain, has your doctor ever asked if it’s had an impact on your sex life? Mine haven’t. But they should have. Every single one of them (in the appropriate specialties) should have!

So I’m saying it loud and proud: I love my vagina! It is as important a part of my body as any other (and more than some…. I’d give up an appendix or tonsils before I’d give up my vagina!) If you have pain or other symptoms in any body part that’s taboo to discuss, feel free to share it here. I will give it the respect it deserves, and I suspect most of my regular readers will, too. After all, it is as much a part of your body as your shoulder, your skin, and your kidney. So why not discuss it?

Which is why I titled this post the way I did. Let’s start with at least being able to say the word itself!

11 Comments | Educating, Frustration, Healthcare, Insensitive, Isolation, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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