Wednesday, September 1, 2010


Over the past couple of months quite a few people have noticed, and pointed out, that I have been more active, that I look better, and that I'm doing better in general. I, myself, have been responding with a resounding "good" or "getting better" when people ask how I'm doing. Unfortunately, you can't believe everything you see or hear.

Don't get me wrong, I am "getting better", but I'm hardly ever "good". However, it's not a drastic change by all means. The big change that I have noticed, and I think everyone else is noticing, is my attitude. I was having a VERY hard time dealing with my illness and all of the changes in my life it caused. I have, over time, learned how to better deal with being at home everyday. I have learned who my friends are, and who aren't, and not to expect anything from anyone. I have learned how to deal with my chronic pain, or I've just gotten more used to it. I've also learned what I can and cannot do, what makes me feel worse, and what makes me feel better. (Unfortunately, one of the lessons I've learned is that drinking a couple of glasses of wine used to make me feel better, now it makes me feel worse.)

One of biggest lessons I've learned is how to lie. I know. That's not a great thing to start doing. But you all have to admit... Do you really want to hear me complain about how crappy I'm feeling all the time? Wow, I could hear the screaming "NO" from here! I, personally, wouldn't want to hear one of my friends or family members do nothing but complain. I even get sick of hearing myself complain. So, I lie.

There is one problem with lying about how I feel and responding with "good" or "great" when people ask how I'm doing. People start thinking I'm doing good or great. Not that that's entirely a bad thing. However, it's not always a good thing either. The problem I've noticed is that people seem to expect a lot more out of me now. If I'm doing better, why am I not going back to work full-time? If I'm doing better, why can't I run errands all morning? If I'm doing better, why can't I have sex every night? Okay, no one actually expects the last one out of me (except for me of course).

I have told everyone what the doctors told me about POTS; that it should slowly get better over time. Well, the pressure's on. I should be getting better, right? As I said earlier, I am getting a little better, but the key word is "little". If we're talking about physical manifestations of my illness (not that big bad depression I kicked out), some have gotten better and some have gotten worse. My fatigue is a little better, but I still get tired really easily. My dizziness is better most days, I think because of the meds, but I still get dizzy when I stand up if I haven't had enough water or salt that day. The decrease in the severity of my headaches has been the most drastic change. I am usually about a 1-2 daily instead of the 5-8 I was before. The problem is that as those things are getting better, a couple of symptoms haven't changed or have gotten worse at times. My muscle weakness/fatigue with very little activity has not changed and the pain in my muscles, primarily in and around my hips, has gotten worse.

To put all of this in real world terms... I went shopping this morning. I was there for a little over an hour. By the time I was standing in line to pay for my stuff, my legs were so fatigued they were shaking when I was trying to stand up from a squatting position. The muscles in my upper thighs, hips and glutes are in a lot of pain now (which they always are if I do much activity at all). I am so fatigued that I haven't had the energy to do anything but lay on the couch.

So please understand that I appreciate everyone asking me how I'm doing, but if I respond with a resounding "good", that means that either I don't want to talk about it, or I don't think you really want to hear how I'm doing. It usually doesn't mean I'm actually doing "good". So please take it with a grain of salt.

And with that... I have to go lay down now as all this typing has made me tired.

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