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

Cutting up a cantaloupe

May 30, 2013

I’ve watched my mother cut a cantaloupe. She makes it look so easy! We’ll be in the kitchen, chatting, maybe snacking, and she’ll decide the cantaloupe is ripe enough to eat, so she’ll pull out a knife and quickly cut it up. Simple. I just cut up my first Cantaloupecantaloupe of the season and I can tell you, that’s not how it works for me.

My process starts at the store. After I decide that I want the cantaloupe, I do a quick body assessment. How are my wrists? Will I be able to cut it? How about my back, knees, toes? Will I be able to stand long enough to cut it? I’ve tried sitting, but it doesn’t give me enough leverage to compensate for my wrists. How’s my appetite? Will I be able to eat the whole thing? And cantaloupes  are heavy. Will I be able to carry it into the apartment? Next, I consider the weather. How hot will it be this week? Will it be too hot to spend time in my kitchen while I cut it up? Is the pre-cut cantaloupe on sale so I can buy that instead? Based on all of those answers, I may actually buy the cantaloupe.

Once it’s ready to be cut, I consider all of those same issues. Assuming I feel up to cutting it up, and my kitchen isn’t too hot, I pull out the cutting board and my good knife and I get to work. I go slowly. I have to be careful not to cut myself. After all, with brain fog, distraction, clumsiness, muscle kinks, and balance problems, it’s easy to let the knife slip. Some cantaloupe always ends up on the floor. So at some point I have to be bending over to pick up what dropped and to clean up the sticky spots, and that involves more aches and pains and use of energy. Afterwards, there are dishes to wash and a sticky counter to wipe down. The trash will smell soon from the rinds. It will also attract bugs. So I’ll have to take it out soon.

This time I was lucky. I got the entire cantaloupe cut up with only a few pieces dropped, only one nick with the knife that was too small to draw blood, and no major incidents. The trash will be dealt with later, but the cutting board and knife have been washed. I have some extra pain now, of course, but nothing too much worse than what I’d expect. So all in all, it was a success!

Not too many years ago, before I took Plaquenil, I couldn’t cut up a cantaloupe at all. This is definitely progress. It’s not as effortless as it seems to be for most people, but at least I can enjoy some nice summer cantaloupe.

12 Comments | Decisions, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Taking pills 10 times a day, literally

May 17, 2013

I wrote once about how much time I spend on health stuff. I wrote about lawyers and insurance and doctors… those are the things that you’d expect to be both time consuming and mentally consuming. As I was trying to work out a new pill schedule the other day, it occurred to me that most people probably have no idea just how time consuming, not to mention mentally consuming, it can be to take pills!

A “healthy” person might not take any pills. Or they swallow an occasional multivitamin or birth control pill. I’ve been trying to remember when I last had a day without pills and my guess is that it was probably around 1996 or so. Then for years my pills were simple: a birth control pill, then a BCP and a thyroid pill, then a BCP and the thyroid one and a multivitamin…. and then it got worse.

I miss the days of simply taking a pill or two with meals. Now, everything has to be timed out so carefully. There are the pills that must be taken with food. There are the pills that must be taken away from food. There are pills that must be taken away from each other. There are pills that need to be taken at specific times of day.

Oh, and when I say “pills,” that includes liquid meds as well.

It’s taken a lot of mental energy and help from my naturopath, but I finally have a working schedule (until the next addition or subtraction, that is):

  • 8am: thyroid pill – 1 pill
  • 8:30: adrenal support, dhea – 5 pills
  • after breakfast: a whole bunch – 9 pills and 8 sets of drops, and a cream
  • 2 hours after breakfast: fiber – 2 pills
  • after lunch: another bunch – 5 pills and 7 sets of drops
  • 2pm: adrenal support, dhea, calcium – 4 pills
  • 4pm: fiber – 2 pills
  • before dinner: calcium – 1 pill
  • after dinner: another bunch – 7 pills and 8 sets of drops
  • 9pm: bedtime stuff – 4 pills

Wow, this looks even worse written out than it did in my head. Actually, the original title for this post had “9 times a day” written, because that’s how I’d counted it. Then as I wrote it out, I realized I’d missed one. It’s a lot to keep track of. The thyroid pill has to be an hour before meals. The adrenal support has to be 15 minutes before eating and at specific times of day. The fiber has to be 2 hours after and 1/2 hour before eating. Some of the mealtime pills are taken then because they have to be taken with food. The multivitamin has extra iron, and the iron and calcium have to be taken at least 1/2 hour apart. In fact, I should be taking calcium 3 times per day but I’m only taking it 2 times per day because I can’t figure out where else to squeeze it in! The drops don’t have to be taken at specific times, but they’re hard to carry around, so I need to take them at home. That means that sometimes I only take them 2 times per day, but that’s ok, as long as I at least take the drops for vitamin D. Some of the pills, though, can’t be missed. Like, they really, seriously, can’t be missed. Like, if it’s really late and I don’t want to deal with driving and so my parents say I can just stay the night, I can’t. Because I have to get home. I have to get home to where the pills are. Because I really can’t skip those morning pills, or even take them late. Some don’t seem too important, but they are. I tried cutting the fiber back to 2 times per day instead of 3 and the effects were horrendous. I’m not about to try that again any time soon!

So you may be wondering what my point is? I have three points:

  1. For those who are in a similar situation, you’re not alone. I get it. Lots of us get it.
  2. For those who complain when they have to take a single pill for a cold, or even for something daily, tell it to someone else. I don’t want to listen.
  3. If you think that by not working I just sit around all day and have fun, and you haven’t figured out yet that that’s not how it works, just imagine trying to keep track of all of this. Imagine how long it takes me to fill my pill boxes each week. And since the drops can’t be prepared in batch in advance, I have to deal with those three times, every single day. Trust me, it would be easier to work a job.

And on that note, I’m off to get some sleep. I hope. Because there’s no more sleeping in for me – I have to be up early to take those pills!

4 Comments | Educating, Frustration, Healthcare, Medication, Rants, Symptoms | 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

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