Chronic Rants

Last week was a really good week. And that made Sunday so much harder to deal with.

First I took a long walk around beautiful Walden Pond (and took this photo), stopping a bunch of times to admire the view. It was unseasonably warm, and sitting down to watch the water was lovely. I was able to clear my head and figure some things out.

I made plans. I worked through ideas that had been weighing on me. I made some tough decisions about my finances and my health. By the end, I was super excited to get started! I walked about 2 miles total and felt ok afterwards. I rested that evening, but that was it.

A few days later my mom came to visit. After a lovely lunch, we took a walk in a wooded area. The sign said it was a 1 mile loop, and that seemed ok to us. Well, I don’t know what went wrong, but the path never looped. We eventually made it back to the car, but we walked about 4 miles. I was surprised I felt so good afterwards. Tired, but good. Hmm. Maybe this was a new trend?

The next day I hung out with friends and had a wonderful time. I got home later than I expected and was too tired to go out to a friend’s house that night like I had planned. Too bad. I really wanted to go, but I knew that resting was the right move.

It had been such a fabulous week. I exercised, got fresh air, got clear on a new mindset, spent time with friends.

And then it all changed. I spent all day Sunday feeling run down. I never left my apartment. I cancelled all of my plans for the day. This sucks, but it isn’t unheard of. And I did a lot this week, so I couldn’t complain, right? I trudged through the day, mostly reading a novel and wishing I could do more.

That would have been ok. It would have been disappointing but totally fine. If only that was it.

Sunday night I got really nauseated. Sometimes I know what causes the nausea, but usually I don’t. I tried Pepto Bismol, which usually helps, but this time it didn’t. I tried medical marijuana, which usually helps, but this time it didn’t. The nausea was really bad. My pulse was racing (114 while I was still sitting) and I felt bad all over.

Over the years, nausea has because an emotional trigger for me. I don’t know why it has, when the pain hasn’t, but it just has. So as usual, I started thinking about how horrible this is, and when will it end, and why won’t it ever go away. Yes, I have these episodes a lot less often now that I’m off gluten, corn, and a couple others triggers.

But why does it still happen? Was it something I ate? Something I did? A delayed reaction to the 4 mile walk 2 days before? How will I handle another 50+ years of this? Why did I bother to make plans? Obviously it was stupid to think I could ever get off of benefits and support myself. I should just stop trying. Then I started thinking about how it might be easier to just kill myself and end this. Except that would be very upsetting to my family and friends. I couldn’t do that to them.

I started having those thoughts a few years ago. I know it’s temporary. I’m not too worried, because I only have them when I’m curled in a ball on the floor, too nauseated to do more than stagger to the toilet occasionally. I have never gotten to the point of really wanting to kill myself but even if I did, I wouldn’t be able to until the worst of it had passed, and I never think about wanting to die except when I’m in the worst of it.

So all these thoughts were floating around in my head, and then something strange happened: I started to cry. And cry. And cry. Before I knew it, I was sobbing. Big, ugly sobs. I couldn’t stop crying. I thought I should call someone. (If you’re new to this blog, I live alone.) I ran through a mental list of awesome people in my life, and finally decided to call a friend who lives in my apartment complex. I asked him to come right over and he did. I didn’t explain, but he must have heard it in my voice, because he showed up with his dog, saying the dog was for therapy.

The dog, of course, immediately started to nuzzle me and lick me. He’s that kind of dog. Very sweet. But what I really needed was a hug and some understanding, and I got that.

We sat on the floor while I cried and talked. I always sit on the floor during these spells – for some reason, it just works for me. I cried myself out and we just sat there for a while. Then for some reason, I started crying again. Still, having someone there was extremely comforting.

Eventually I wore myself out. My friend and his dog left (he mentioned leaving the dog, but I was too weak to care for him.) I fell asleep on the couch to an old movie that I often watch when I don’t feel well. I woke up less than an hour later and found the nausea had subsided enough that I could drink a little water. Lots of diarrhea and lots of crying can really dehydrate a person. Then I stumbled to bed. I slept fitfully, but got through the night.

Monday was a bust. I cancelled plans and ate almost nothing. But it didn’t get that bad again. Tuesday was better, and I even left the apartment. And today is better still (though it’s after noon and I’m still in my pajamas, so it’s not fantastic – I try to get dressed by noon every day when I can.)

So why am I sharing this? I’m sharing it for a few reasons. For one, amongst my friends with chronic illness, I’m often seen as the strong one. Strangers online (both through this anonymous blog and under my real name) say that I’m a role model. I have my shit together. I’ve got a good handle on all of this. I work my butt off to take care of my health, research new treatments, find the best doctors and practitioners. That’s all true. But that doesn’t mean I don’t have really bad times, too. I think we all need to remember that the people who seem to be great probably have bad times behind closed doors where we can’t see them. It’s important not to idealize people, but to see them as they are.

It’s a reminder that we all have our struggles. We struggle, and then hopefully we have better days, too. We don’t need to assume someone is perfect in order to have them as a role model.

I’m not perfect. I’m still continuing to fight every day for the best health possible. I want to believe that one day those episodes will end. Until then, I will just keep on trying. Because what else can I do?