Skip to main content

Feeling tired again

Lately I’ve been feeling so much better than I did the last part of January and most of February. The weather has been beautiful here, and I’ve been walking at least 45 minutes a day and not feeling totally crappy afterwards. Sometimes my schedule won’t allow me to do 45 minutes at one go, so I break it up into two walks. Maybe that’s not the best, but I figure it’s better than nothing. I’m just so happy that walking feels good and that I don’t feel wiped out when I get home!

But, lately I’m back to feeling tired again. I hate fatigue. It’s one of those “symptoms” that’s so hard to nail down. It can be caused by any myriad of things. It can be totally debilitating, and yet often nothing shows up on blood work. It isn’t “severe” since it doesn’t hurt – yet it’s hard to explain to the people around you that when you say “I’m tired” you don’t just mean you didn’t sleep well the night before or you need a nap. I mean I’M TIRED!

Last Thursday evening I wasted much of the evening dosing after work. Friday evening I dosed in and out quite a bit, and Saturday I wasted most of the day sleeping. Sunday I felt great! Sure, I’d had all this sleep! But by Monday I was battling the fatigue again, trying to concentrate at work and battling to stay awake. Today is the same. I feel so tired. I’m having a hard time focusing. I feel tingly in my hands and when I walk around the office I feel a little light headed. I’m also having strange “hot flashes.” Given the nature of our building’s calendar-run heating and cooling system, however, I’m not sure if that’s really a physical symptom, or just the “weather in the office.” But, I do know that I’ll be sitting here feeling just fine and the next minute I’m sweating and feeling all flush in the face. Then, five minutes later I’m fine again. What’s up with that????

And, the really frustrating thing is that if I mention it to anyone, they’ll very logically tell me to go to the doctor. That will mean missing another day of work, and every time this happens and I go – it’s a complete waste of time. I’m not running a fever. I have no physical anything going on that anyone can observe. Thus my cries of “I’m tired” get met with – get more sleep. I’d be willing to bet that if I went in right now my blood work would be completely normal. Happens every time! WWWHHHHIIIIINNNNEEEEEE! And, tomorrow, or in a week, or in a month the fatigue could be gone again. Who knows.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria