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

A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.

3 Comments | Expectations, Frustration, Isolation, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

Using sex as a treatment method

February 12, 2013

Every week WegoHealth hosts a Twitter chat for health activists, and today’s chat was about sex and sexuality. Then a couple hours after that I actually had sex, a rare occurrence. So with sex on the mind, how could I write about anything else?

I don’t have sex as much as I’d like. I haven’t been dating much, and I only sleep with people with whom I feel a connection, so sexconvothat really limits me. Then a couple months ago, I got a text from D. D and I dated many years ago. Then after we dated, we slept together on an off for a couple of years. Then we lost touch for several years. We’d known from the start we’d never work out as a couple – he didn’t believe in monogamous relationships and I wasn’t interested in anything else. Still, he’s an excellent lover, and he thinks that same of me, so we kept having sex. I’d thought about him often in the years that we’d lost touch, so I was pleased when he texted me. We’ve been together several times since, and it’s been great. I have to be on guard that I don’t get emotionally involved, but aside from that, it’s all good. We get along great, we trust and respect each other, and we each think the other is fantastic in bed. Since I’m not dating anyway right now, this is just about perfect. (It would only be more perfect if we could sleep together more often.)

There’s another thing about D: he’s ok with the health stuff. When I first told him, he didn’t bat an eye. He’s always been Feelin' Satisfiedsupportive, without trying to “rescue” me. A lot of us know how rare that is. I once wrote that three different times I have crapped on a guy during sex. He was one of those guys, and he just shrugged it off and suggested we take a shower. Fantastic, right? Even tonight, in the middle of things, he kept starting to grab my arm, then stopping. Then I realized why – I told him he could grab it and it wouldn’t hurt me, and he immediately did. When we were together years ago, that would have hurt, and he remembered and was trying to be careful.

The point is, I can trust D around the health stuff. And that’s why I didn’t cancel on him tonight, even though the past 24 hours had been lousy. The fatigue hit hard last night, for the first time in a month or two. That was physically horrible and mentally discouraging. Then I woke up during the night to a lot of gas, cramping, constipation, and diarrhea. It was a terrible night. It took me several hours to get back to sleep. I woke up in the morning feeling lousy. I got out of bed late. I had no appetite most of the day. I spent most of the afternoon (I spent the morning in bed) watching tv, which I never do anymore. Usually when I have nothing to do I read, but I didn’t have the energy for that today. And to add insult to injury, the hormone mess meant that my sex drive was almost gone. I hadn’t been having sex fantasies, masturbating, or even feeling an urge for sex lately.

So why didn’t I cancel? Several weeks ago I was having a bad day when D was supposed to come over. I was in a lot of pain, and had been for days. I figured it was worth adding to the pain with sex. I’ve written before that sex can help with pain (this is true for me, but I’m not a doctor and am not giving you medical advice,) and that time a couple weeks ago it really did the trick. I felt much better afterwards, with the pain almost completely gone. I figured it was worth seeing if sex might help again today.

And help it did. It helped on many levels. Physically, I think it gave me needed exercise, and will contribute to better sleep tonight. He also gave me back my sex drive, which felt (and still feels) fantastic. Emotionally, it felt great to be close to someone and to cuddle for a while afterwards, having him hold me. Plus, I always feel wonderful about my body after sex. I feel sexy and desirable. Usually I dislike my body. I’ve always been comfortable with my appearance (except during Prednisone-fueled weight gain) but I don’t like the illness parts. This leads to a lot of negative thoughts about my body (such as I hate that I feel like crap! and Why does my body suck so much?). But it’s hard to have negative thoughts about my body after a half dozen orgasms, and after watching D’s reactions to my touch. Besides, how broken could my body be if I’m still capable of making someone scream like that?

Sex won’t solve all my health problems, even in the short term. And sex with the wrong partner won’t help at all. But when it helps, oh boy does it help! I’m not about to miss out on that.

10 Comments | Decisions, Educating, Expectations, Healthcare, Limitations, Medication, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

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