The trouble with sleeping late

June 29, 2013

I had another bout of annoying insomnia last night. This just started in the past year and it’s baffling. I wake up around 4am for no reason that I can figure out, then I just stay awake for a couple of hours before getting back to sleep. Then I wake up around the normal time, just deprived of sleep. It makes no sense to me.

Last night was different, though. After 2.5 hours of lying there awake, I finally drifted back off to sleep. But instead of waking up around 9 or 10 am, I slept until 10:42! I would have probably gone back to sleep, but seeing those numbers on the clock forced me to wake up. My pill schedule was all messed up! And of course it’s a Saturday, so I couldn’t ask my naturopath for advice.

First things first, I took my thyroid pill. That always happens as soon as I wake up. But then, 1/2 hour later, should I take my regular dose of Isocort? It’s an adrenal supplement, and the whole point is to take it at certain times of day based on my adrenal function at those times. My cortisol is low in the mornings, so I usually take it when I wake up (1/2 hour after the thyroid pill to avoid conflicts.) But should I take it at 11:15? That was too late! I compromised and took a half dose. I didn’t think it would be a good idea to skip it completely.

I had to wait a bit longer to eat, so breakfast was going to be around 11:30. Maybe I should just make that lunch. But wait, I have pills that I have to take with food 3 times a day! Ok, so I had a really small breakfast and took my breakfast pills, and I’ll have lunch around 2pm.

But wait! Lunch at 2pm means I can’t take my next round of adrenal supplements until 3pm and that’s too late! I’m supposed to take them around 2pm, but I have to wait an hour after eating before I take them. So ok, maybe I’ll move lunch to 1:30 and take the pills at 2:30. That’s not too bad.

And the fiber I’m supposed to take 2 hours after the breakfast pills and at least 1/2 hour before the lunch pills? Well, too bad. I’ll just have to take it closer to the other pills and so be it.

Before all the pills, if I slept late that just meant I started my day late. When did it become so damn complicated?

2 Comments | Decisions, Frustration, Limitations, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

What’s “normal” tired?

June 8, 2013

This is Pride week in Boston. I love Pride! It’s such a fun holiday.  Unfortunately, I can’t celebrate as much as I’d like. There are great parties Thursday night, then the Dyke March on Friday followed by the Dyke March after party, and then of course the parade on Saturday. There are parties Saturday night, and then more events on Sunday. And earlier in the week there are dedications, movies, etc. It’s a fun time, but who has the energy for all of that?

Boston Pride

My parents came with me to the parade today for the first time. We all had a lot of fun. We walked around, watched the parade, then walked around some more. By the end I was exhausted. I wanted to stay longer, see more, listen to the music, see more friends… but my body said no. My parents were tired too. So many it was normal to be so tired?

Then again, maybe I shouldn’t be comparing myself to people who are 30 years older than me. Maybe I shouldn’t be as tired as a couple of 60+ people. I looked around at my peers. Many of them went to the festivities that I missed on Thursday night, as well as the Dyke March. They walked in the parade today. They plan to go to a party tomorrow. They’re a bit tired, but after some sleep they’ll be fine. They’re my age. Is that what I should be aiming for? Is that how I’m supposed to feel?

It’s been so long since I felt “normal” amounts of energy that I have no idea what to expect now. The last time I felt that, I was around 20, so I suppose I would have less energy now, in my mid-30s, anyway. But how much less?

I know it’s impossible to measure my own health or even my goals against the health and reality of others. But I also know it’s human nature to try and compare anyway, so I don’t berate myself for it. Still, is there any point? Will I ever be close to achieving that level of so-called normalcy? There’s no way to know. But I’d sure love to get even part way there.

5 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Can’t seem to charge my (adrenal) battery

May 15, 2013

A lot of us struggle to describe how we’re feeling. Somehow, the English language, and probably other languages too, just doesn’t have the right words to describe how I feel. Instead of stumbling around using the words I’ve got, I try to use analogies.

That’s how I found myself telling my naturopath yesterday that my energy levels were like a rechargeable battery that just wouldn’t recharge. It’s not that it charged and then wouldn’t hold the charge. No, it’s that my energy battery wouldn’t recharge completely in the first place.

Charging my adrenal battery

The other day my cell phone battery got dangerously low. It went from 100% when I woke up (I plug it in overnight) to 82% after reading the news and Twitter to 56% after random use. Then before I knew it, it was as 27% then 24% then 10%. I usually don’t need to plug my phone in during the day, but this day was different, so I plugged it right in. But then I needed to leave my apartment, and of course I brought my phone with me, so I unplugged the poor thing, even though it was at 80%. It had been serving me well all day, but I didn’t give it a chance to fully recharge. And my body fares even worse.

My energy doesn’t start out at 100%, of course. If 100% is how a “healthy” 30-something should feel after a good night’s sleep, then let’s say I start out at 40%. I give myself adrenal support via supplements, I sit in front of a blue light, and I eat a healthy breakfast. Now I’m up to 60%. Before I know it, though, I’m back down to 50%. I take a shower and suddenly I’m at 25%. I lie down for a while. I take more supplements, eat more food. Getting back to 50% feels like a good accomplishment. I take a walk and feel great while I’m doing it, but when I get home I’m at 35%. I rest for a while, and boost myself back up to 42%. Then I have to cook dinner, but I rest while I eat, and then rest for a while afterwards before doing dishes, so I manage to hover around 40%. My energy drains as I continue through the evening, until I’m hovering around 20%, at which point I drag myself off to bed, hoping to waking up feeling energized, but somehow never seeming to fully regain my charge. The battery (my adrenal system, as it turns out) just won’t juice up like it’s supposed to.

I don’t know if I’ll ever get up to 100% again. My naturopath says I will. My traditional doctors say I won’t. I just don’t know. But right now, 75% would feel pretty fucking awesome! So I have a new goal……

5 Comments | Expectations, Fatigue, Frustration, Limitations, Raves, Unpredictable | Permalink
Posted by chronicrants

Welcome back, brain!

May 9, 2013

As bad as the physical symptoms are, it’s the cognitive symptoms that I have the most trouble with.

Last week I started on a downward spiral. It was slow at first, then I thought I was improving, and then it really took a dive. After the dive, I spent two days at home barely moving. Then I went to a medical appointment and the grocery store in the same day and could barely move that night. By yesterday, I was as fatigued as I’ve ever been, and I could tell that whatever was wrong, it wasn’t going to fix itself. I emailed my naturopath. She called back with a list of dosage increases for various supplements I was already on. Extra vitamin D, extra Isocort, etc. seemed like it might help. I took the pills and drops and then went back to watching tv, since I couldn’t do much else. I didn’t even have any interest in reading, which really isn’t normal for me.

Amazingly, I started to feel better almost immediately. I wasn’t sure if it would last, but this morning, I felt almost “normal,” whatever that means. It’s incredible! Thank goodness for that naturopath!

Now, I knew I wasn’t thinking well this week. My thoughts were fuzzy and took way too much effort. I didn’t even want to read. And my emails with a friend just weren’t right. She gets bored at work so we email back and forth most days, talking about her kid, my family, her family, her job, my insurance issues, tv shows, politics, and whatever else comes to mind. Yesterday we were debating the effects of language assimilation on cultural preservation. Part of the time I couldn’t get my thoughts to come out right in the emails. The rest of the time I couldn’t get my thoughts to get out right in my own head! I couldn’t seem to get a handle on what I wanted to say. I knew it was bad, but I didn’t realize how bad it was until I looked at those emails this morning and realized how poorly I was communicating. Today I could organize my thoughts. Today I knew the argument I wanted to make. For the first time in days I could think clearly. What a relief!

I won’t pretend that I have my cognitive abilities back completely; at least, not to the level they were at before I got so ill. But I’m sure grateful to have whatever I have right now. It was a short time, but I really missed being able to think. I’m so glad to have my brain back!

3 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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