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

You put orange juice in this?!?

May 13, 2013

I appreciate when people try to accommodate my food restrictions. They go out of their way to make sure I can eat their food, and it means a lot.

Unfortunately, some people don’t take it as seriously as they need to.

Here’s the thing: some allergies kill, some don’t. But all allergens need to be avoided.

So sure, eating beets or peanuts won’t kill me. But I’ll be pretty damn miserable for a week or more. I could have increased pain and increased fatigue, and I’ll definitely have all sorts of horrible digestive problems. So even though I’ll survive, that’s still some pretty rotten stuff that I’d rather avoid.

I’ve done pretty well in restaurants. I don’t go out to eat often and when I do, I make sure the waiter really understands my needs. So far, so good. Unfortunately, eating the food that friends and relatives prepare hasn’t gone as well. In fact, I’ve gotten sick several times. There have also been a few near misses.

A good example of a near miss was this weekend. We were having a lovely family meal. B had gone to great effort to prepare everything. He told me all of the ingredients, to be sure I could eat it. It all sounded fine except for one sauce, which he kept separate. I was thrilled. Later, as he was getting it all ready, I asked him again about the ingredients. Again, it sounded fine. Then while we were eating, someone else asked how he made it so they could copy it themselves. He ran through the preparation, and then mentioned what made it so great – the orange juice used at the end. Wait a minute, he didn’t tell me about any orange juice! I froze with food on a fork halfway to my mouth. I must have said something, because everyone looked at me. I’d already eaten several bites. Oh crap. He shook it off with, “It’s only orange juice.” I was horrified! As it turns out, it was a freshly squeezed orange, so I was ok. Store-bought orange juice would have been a problem. But he didn’t know that. He just assumed it was fine for some crazy reason. Or maybe he’d forgotten it earlier and he was trying to cover his tracks. Either way, I was really insulted. Here I thought he cared enough to work around my food allergies, and he’d left out an entire ingredient that didn’t seem important to him. This is the second time he’s done this. Once could have been a fluke, but twice is the start of a pattern that I don’t want to continue. I know he’ll be insulted when I don’t eat his food anymore, but my health is more important then his feelings.

I think that’s the important thing that so many people don’t seem to understand. My health is more important than their feelings. So if they suddenly realize they’ve forgotten to tell me about an ingredient, I’d rather they just say it than to wait and hope it’s ok. That’s happened with others who’ve cooked food that I’ve eaten. And it’s not ok. And if I say I can’t eat it, that’s not a comment on your cooking ability. It’s that I’d rather not spend the night doubled over in pain because I chose to eat something with a peanut sauce in order to keep you happy. Why is this so hard to understand?

Some of these incidents have turned out badly. I’m just thankful this last one was ok. I’m in the middle (or hopefully beyond the middle) of a bad downturn, and it’s kicking my ass. I’m pretty sure that eating the wrong foods right now would be a very, very bad move. Which is why for a while at least, I won’t be eating anyone else’s cooking.

2 Comments | Decisions, Educating, Expectations, Frustration, Gastrointestinal, Kindness, Rants, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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