Easy things that aren’t so easy

April 24, 2015

When you have chronic pain, chronic fatigue, and other chronic symptoms, there are some everyday movements and actions that most people assume are easy, but which really aren’t. They’re painful, draining, and sometimes impossible.

I was reminded of this yesterday when my mom called. I told her I was in recovery mode from the activities of the day before. She knew I was resting, but she didn’t seem to understand that just talking on the phone was exhausting. I was supposed to be resting, so I shouldn’t have been talking on the phone, but she thought of it as a low-energy activity. In fairness to my mom, I should have been more clear about my limitations; that’s my responsibility and no one else’s. But it did make me think about how differently we perceive things.

So here are just a few things that others think are easy but which aren’t for me. And of course, it varies from day to day. Some days sitting up is no problem. Others it’s impossible.

  • Sitting up.
  • Cooking.
  • Walking down the street.
  • Walking around my apartment.
  • Keeping my eyes open.
  • Standing up.
  • Breathing.
  • Reading.
  • Eating.
  • Sitting down without letting my body just drop to the sofa/chair/toilet.
  • Talking.
  • Singing.
  • Concentrating on anything.
  • Drinking water.
  • Showering.
  • Watching a movie and following the plot.
  • Typing.
  • Thinking.
  • Moving my hands.
  • Keeping my hands still.

What can you add to this list? Please share your ideas in the comments. Then share this with your family and friends to help raise some awareness.


Thanks a lot, hormones!

April 5, 2015

It’s easy to forget how much of an effect hormones have on our physical, mental, cognitive, and emotional health until they get all fucked up.

Now, before I continue, let me say that, yes, I will be talking about my period. Oh heavens! Some of you have already IMG_20140312_153843closed the browser screen. Others are squirming uncomfortably. Tough. This is what I talk about on this site: health issues. And that includes periods. Have questions? Read this post from last year.

As I’ve mentioned before, I have PCOS. That’s polycystic ovary syndrome. It’s not uncommon, but it affects different people in different ways, so we have to be careful not to generalize when it comes to PCOS. For me, it means I’ve never in my life had a “regular” period. I won’t bother to describe the horror that was my so-called menstrual cycle when I was a teenager. Let’s skip ahead to last year.

After many years on a few different birth control pills and other hormones, I suddenly stopped getting my period. I’d had some off months before, but this time was different. My doctor had me go off the pills to see if I’d get a period naturally. I didn’t. So he ordered an ultrasound. Now don’t get me wrong, I was thrilled to not be getting a period. It was one less thing to deal with from a body that gave me enough to deal with. And I wasn’t looking to get pregnant, so that wasn’t an issue. But there were 2 likely reasons for the lack of a period, and we needed to know which it was. Birth control pills can lean to a thinned endometrial lining, and that can mean no blood. Or maybe I wasn’t ovulating, so that’s why there was no blood. Maybe it was both. Unfortunately, the ultrasound showed that my endometrial lining was building up. It wasn’t at dangerous levels yet, but it was getting close. That’s not good.

So my doctor put me back on a birth control pill. And it’s not been good. First came the brain fog. Then the moodiness, ravenous appetite, and increased pain. Then the fatigue. I eventually realized I’d become hypothyroid again. Estrogen can bind thyroid receptors (thank goodness I’d done my own research!) My doctor ran blood tests, and while I waited for the results I went on the placebo week (many birth control pills have this: you take the pill for three weeks, then nothing or a placebo for a week.) I got my period (yay!) and felt SO. MUCH. BETTER! All those new symptoms were gone!

The blood tests came back and my doctor increased my thyroid med when I started the next birth control cycle. The symptoms all improved, but didn’t go away completely. The fatigue is still bad. I became nauseated frequently. I had occasional disturbing thoughts. The other day I was just going about my business, thinking about how lousy I felt, and suddenly thought that it might be best to die. Then I wouldn’t have to deal with the health stuff. Hmm, that’s not good. I wasn’t feeling depressed or suicidal. The thought only lasted a moment. But it was a moment too long. I’m usually a happy person, but I’d been in a bitchy mood for the past week. I’m not liking me these days.

Yesterday I’d had it. I was sick of the nausea. I worked too hard to fix my diet to be dealing with this bullshit now! And the fatigue was too much. I worked too hard to fix that, too. And don’t get me started on my mood. I just couldn’t stand it anymore.

So today I made a change. Sure, I probably should have checked with my doctors. But I didn’t. I know what I’m doing is safe in the short term. We’ll worry about the long term at my next appointment in a few weeks. So what did I do? I went off the birth control pills and I went back to my old dose of thyroid med – exactly what I was doing before this whole mess. I’m only 1 week into the cycle. I don’t know if I’ll get my period, but I do think I’ll be feeling better in another day or two, and that’s the important part.

I will need to do something to make sure I get my period at least a few times a year. There are other options. This was the option that we thought would have the fewest side effects. Back to the drawing board! Maybe I need a different estrogen pill. Maybe I need progesterone instead. Maybe I need both (which is what I had before last year.) Maybe I needed to raise my thyroid med more. That’s very possible, and I probably should have done it today, but I just felt too lousy.

Very likely, I will need to try this whole thing again in a few weeks. And I will go through this same misery when I do. But for now, I’m hoping my hormones will calm down a bit and allow me at least a few days of feeling my usual level of lousy, instead of this new level!


I miss my friends

March 30, 2015

The other day I wrote about my many medical appointments this month. There was a time when I’d squeeze an appointment in before work, or go during an extra-long lunch break (which I’d have to make up for after work hours.) Those days are long gone. Now I don’t have to worry about missing work, but I do have to worry about missing life.

As I’ve been feeling better lately, I’ve been spending more time with friends. What a treat that’s been! I do better during the day, so I don’t go out much on weeknights. But I see many friends on weekends, and I have a lot of new friends who also don’t work due to chronic illness, so I hang out with them on weekdays. Seeing one or two friends on weekdays each week has been wonderful! Unfortunately, with so many medical appointments, I just can’t manage it.

Today (Monday) I’m doing things around my apartment that need doing. They really need to be done, but I’m also resting. I have an appointment early tomorrow that I need energy for. And one of the things I have to do today is to prepare for tomorrow’s appointment: I need to prepare all sorts of notes so I don’t forget anything when I’m in the office. Tomorrow I doubt I’ll do anything besides that appointment. Wednesday I hope to do some clothes shopping. I don’t have any bathing suits that fit and summer is right around the corner. I’d like to see friends, but I know I won’t have the emotional energy for it after Tuesday’s appointment. Still, shopping drains my physical strength and causes extra pain, so I always need a full day to recover afterwards. That’s what Thursday will be: a recovery day. And at some point Thursday (or sooner) I need to prepare notes for Friday’s medical appointment. After Friday’s medical appointment I’m going to a Passover sedar with my family. I’m not religious, but it means a lot to them, so I go. I’ll probably have to go directly from the medical appointment. Saturday is a nephew’s birthday party, so as you can imagine, Sunday will be another day to rest. And BOOM! The week is gone!

Last week was pretty similar, and I think the following week will be, too. And of course, I know I’m lucky – a year ago I wouldn’t have been able to manage so much in a week. This is huge for me! Still, I miss hanging out with friends. I miss socializing. I like having quiet time to myself. I don’t get bored easily. I can happily spend a day reading and puttering around. But like many humans, I’m a social creature. I live alone, so on the days I don’t leave the house, I don’t see another human being. Days like yesterday, I might go out and see strangers in passing, but I don’t have any real conversations with anyone.

March is a gray month in Boston. As I write this, the skies are dark and there are some light snowflakes coming down from the sky. I have no desire to go for a walk (which I’ll have to do anyway) or to go outside. Yet, a little company would be lovely.

Like I weather, I know my current social situation is temporary. So I’m trying to make some plans with friends for a few weeks from now. At least that way I’ll have something to look forward to when this ridiculous string of medical appointments is over. And I’m just grateful everyone understands why I’ve disappeared for a bit.


On not noticing the pain

March 2, 2015

The point of pain is to make you aware that something is wrong with your body. At least, that’s supposed to be how it works. Unfortunately, for some of us that system is malfunctioning.

In theory, you feel pain, you pay attention to it, you try to fix the source of it. But when your pain is constant, that’s not how it works.

My pain started more than 22 years ago. I’d have it for days, weeks, or months at a time. It would randomly go away, only to return at some unexpected time. Then about 19 years ago, it changed: it got worse and it became a 24/7 presence in my life.

Most people would expect me to have been thinking about my pain every day then and now. And in a way I did and do, but not in a focused or conscious way.

After all these years, I know what movements and actions will trigger pain and I avoid those. If I absolutely had to pick up something heavy or move in certain ways, I literally wouldn’t know how to do those things now. It’s been so many years, that I don’t remember how. Like riding a bike. I stopped riding a bike due to the pain and I’m pretty sure that if I tried now, despite the well-known saying, I’d fall over (at least in part because my center of gravity has shifted quite a bit since I was 16.) So I suppose that in avoiding those triggering actions the pain is on my mind, but only in the background.

These days, I only pay attention to the pain in two situations:

  1. When it spikes. I can’t ignore those sudden increases.
  2. When it’s consistently severe. I can ignore pain up to a 6 on my pain scale (with a range of 1-10) fairly well, and a 7 if I need to, but above that I can’t ignore it. When it hits 8.5 I start considering taking pain meds, even though they have side effects that I hate.

So what about the rest of the time? Well, I notice it sometimes, but it doesn’t take up a lot of room in my brain. Other times I forget that I’m even in pain. When the doctor asks if I’m in pain, I sometimes have to stop and take inventory of my body. Because otherwise I’m not sure. Other times I’m in a lot of pain and it’s obvious even to me.

I’m not saying it’s easy to ignore pain or even that it’s natural. For me, it was a matter of self-preservation. When I was 17 I reached a point of exhaustion and I just had to learn to sleep through the pain. There was no other way to function. So first I began to sleep through the pain, then I pushed it farther and farther back in my mind as it became my new normal. And there were other things on my mind. I was applying to colleges, going out with friends, dating for the first time, fighting with my sister, thinking my parents were unfair (hey, give me a break, I was a teenager!) and spending many hours on homework. I had, you know, a life.

In other words, there was more to my life than just the pain.

Even now, when my life is more taken up by my health problems than it was in those early days and I can’t work at a job, I have non-health things going on, too. I date a bit, I spend time with friends, I volunteer. And, yes, I take care of my health constantly. In an odd way, that’s also a distraction from the pain.

So now, like then, sometimes I’m too busy to think about the pain. Sure, a 5 on the pain scale would upset most people. And I admit, if I suddenly feel a 5 in a new place, I can’t ignore it. But if I feel a 5 in an area where I’ve had daily pain for years then sure, it might not get my full attention. A part of my brain picks up on the pain signals, decides it’s not worth addressing, and relegates it to the back row of my attention theater.

A little while ago, in the middle of typing an earlier paragraph, the pain got bad enough that I could no longer sit up in a chair. I noticed the pain. I had been ignoring it for most of the last week and my body finally gave me some clues that if I kept ignoring it, I’d be paying a steep price later. And that’s why I’m now typing to you from my couch. But while I was busy continuing this post, I forgot about the pain completely. I wasn’t aware that I was even in any pain at all. Now that I think about it, yes, it’s still there. It’s significantly better than it was when I was in the chair. No doubt that it’s better. But it’s there. And if I wasn’t so used to it I’d probably be worried that something was wrong with my body.

But I know better than that. And that’s why I’ll keep going about my day, doing as much as I can so I can cross things off my “to do” list for the day, and only noticing the pain if it gets worse again. Until then, it won’t even cross my mind.

And if it does, I’ll shove it away.