Wednesday, April 21, 2004
I feel like an idiot....
Ok, I WAS warned, by Dan, by my friends. They all expressed concern that I had too much activity scheduled over the weekend. But I was sooooo hoping the tide had turned and that I would be able to do one or two extras for a change. And I planned a whole day of rest on Sunday, figuring that would help. It used to be that when my pain level was low, as long as I got enough sleep, the fatigue would recede. I guess my body no longer plays by that rule.
When I awoke on Friday, a path was cleared in the house for the delivery of the new bookcase, but I'd still not dusted anywhere, and there was still some clutter and dirty kitchen countertops to take care of before my in-laws arrived. Dan had to get some work done on the car and wait around most of the afternoon until it was ready (we only have one car) and then go to work, so I was pretty much on my own. The bookcase delivery went smoothly, and I got to work on putting away some CDs in the living room. I'd forgotten, though, that the couch had been moved to make room for the delivery guys, and I caught my heel on the wooden frame. OUCH! I lost a lot of skin, and it began to swell, so I had to stop what I was doing and ice the derned thing. That took up time I didn't have to spare....next thing I knew, it was time to start making some chili so Dan's parents would have something to eat when they arrived. Well, what I thought was a three-hour recipe turned out to be four. I somehow found the energy to hastily dust the downstairs and organize all the receipts, catalogs, newspapers, etc. that had been lying around. But I had only just started dusting the upstairs when I heard the door slam of an SUV. Dan's parents had arrived....an HOUR AND A HALF before I was expecting them! I was all sweaty with my hair coming out of my ponytail, and I smelled like dust and cleaning products because I hadn't gotten to shower yet. So I threw the rags and the furniture polish in my bedroom and answered the door. I was able to sneakily clean the kitchen after they arrived under the guise of cooking the chili, which was nowhere near finished yet. Then I excused myself and took a shower while Dan's parents brought in their stuff from the truck. We had a late supper and watched "Seabiscuit" on DVD. Went to bed early for me so I could get up for the big day Saturday.
The alarm went off at 7am, almost unheard of for me. Dan had generously offered to participate in the Sjogren's Walkabout with me, so he had to get up too. Suprisingly, Dan's parents decided to go too. The walk/fundraiser took place in a mall across town. After I registered, I talked with several of the people I recognized from support group meetings. The turnout wasn't too bad....I think a hundred or so? Not bad for the first-ever such event in the US. We had a DJ and a mascot, and the Sjogren's Foundation CEO was there from Washington, DC. A local TV reporter told us how, after attending a support group meeting for a story, she realized the symptoms described applied to her mom, who had been ill for several years. After she told her mom about it, the woman went to the doc and got tested, and low and behold, she did have Sjogren's. Anyway, the walk began at 9:30. It was two miles, which was two laps around the mall, but you could stop after one lap if you thought it was too far. I took my time, talking with some of the other walkers, and discovered that one mile was much easier and shorter than I thought. I decided that since this was a special occasion and I wasn't hurting much, I'd go for two. Halfway through the second lap, I suddenly got hit by the sledgehammer of fatigue, but I was already at the opposite end of the mall, so I had to finish the distance. I was the last one to complete the walk. The fundraising goal for the event was $5000, but we generated $15,000 that day! Is that awesome or what?
I tried to take a nap after I got home, but the phone woke me up twice, the dog woke me up twice, and Dan woke me up once. I finally gave up about 3:30 and got up to make something for lunch. Went over to my sister's around 7pm, and she generously offered to drive us to the comedy club. Had to stand in line for quite awhile because many of us had tickets for the show that had been cancelled and had to exchange them at the will call desk. We got pretty decent seats, to the left of the stage on an elevated wing in the front row. There were some people smoking, but it was fairly far off from where I was sitting, and I wore my air purifier, which helped. The opening act was pretty cool....I think his name is Bruce Daniels? Anyway, his routine is fairly low-key to start and just gets funnier and funnier. And Margaret Cho kicked ass! She looked great! Her material was all very current, straight out of the headlines and the events of her own life in the past few weeks. She must update her routine every single day...not everyone can be that spontaneous. Amazing how she is able to say a lot of the things I think and still make it all hilarious. She got the most enthusiastic standing ovation I have ever seen at that comedy club. I was soooo happy I went, but to say I was exhausted when I got home would be a gross understatement. I had a bowl of leftover chili and fell asleep on the couch almost before I finished it.
Sunday I was awakened by the phone again. I was an utter zombie, and I knew better than to even attempt to go shopping with Dan and his parents. I asked them to go without me and to come back in time for me to make dinner for everyone. I made chicken Parmesan, chicken-flavored brown rice and salad with home-made dressing. Then Dan's parents wanted me to see "Passion of the Christ" at the theatre. I complied. I may be one of the wordiest people in the world, but I don't know what to say about that movie. I don't know what to think, either. Maybe I never will. I don't regret having seen it, but I do know that I will never watch it again. I don't feel I need to receive its message more than once. After we got home, I arranged my new bookcase and went to bed about an hour and a half earlier than usual.
Yesterday, I was still dragging but went to aquacise anyway. Got another nasty attack of vertigo in the pool which lasted about an hour after the class ended. Wanted desperately to go back to bed, but Dan's parents wanted to take me to lunch, and I knew if I lay down I wouldn't be able to get up in time. We went to Boston Market because I knew what I could eat there. I went straight to work from there. I must have looked just as dead as I felt because my co-workers were asking if I was really tired or something. I fell asleep while proofreading.
Today, I had a somewhat early gyno appointment. It took much longer than I expected. I was so tired I nearly began to cry at the appointment. Dan's parents headed to their religious conference shortly after I got home. I had to go back to bed after that....I had no choice. I set the alarm, but absolutely could not get back up. I struggled for half an hour before finally dragging my nearly comatose self downstairs. Dan got back from his doc appointment, took one look at me and asked if I would be going to work, and I just started sobbing. Even though I was exhausted prior to this weekend, I felt guilty for making myself worse. I really wanted to go to work, but there was just no way. I went back to bed and don't remember much of anything until 8pm. I got up feeling pretty decent and had leftovers for supper and watched "Four Weddings and a Funeral" on TV. But by 10:30, I started feeling wiped out and weepy again.
I don't know what to do. I need to be active to preserve my mobility, but every little action exhausts me. I'm starting to think this is not just the post-prednisone blues and maybe not just a flare either. I felt just like this last fall before I started the prednisone. Unfortunately, no doc can tell me whether the fatigue is permanent or not....Sjogren's can be progressive in some people and variable in others. Maybe starting my shift an hour earlier next month will be helpful....I'll get an hour more sleep before aquacise. All I know is that I cannot continue to work this way indefinitely. I will express my concerns to the rheumatologist at my appointment next week even though he has already told me there is nothing to be done for the fatigue. I am bitterly disappointed that I am unable to do more now that my pain level is down. I guess all I can do is give my upcoming new shift a chance before giving up on being able to work.
Need to go hug my hubby and my pup.
Pain level: 5
Fatigue level: 10
When I awoke on Friday, a path was cleared in the house for the delivery of the new bookcase, but I'd still not dusted anywhere, and there was still some clutter and dirty kitchen countertops to take care of before my in-laws arrived. Dan had to get some work done on the car and wait around most of the afternoon until it was ready (we only have one car) and then go to work, so I was pretty much on my own. The bookcase delivery went smoothly, and I got to work on putting away some CDs in the living room. I'd forgotten, though, that the couch had been moved to make room for the delivery guys, and I caught my heel on the wooden frame. OUCH! I lost a lot of skin, and it began to swell, so I had to stop what I was doing and ice the derned thing. That took up time I didn't have to spare....next thing I knew, it was time to start making some chili so Dan's parents would have something to eat when they arrived. Well, what I thought was a three-hour recipe turned out to be four. I somehow found the energy to hastily dust the downstairs and organize all the receipts, catalogs, newspapers, etc. that had been lying around. But I had only just started dusting the upstairs when I heard the door slam of an SUV. Dan's parents had arrived....an HOUR AND A HALF before I was expecting them! I was all sweaty with my hair coming out of my ponytail, and I smelled like dust and cleaning products because I hadn't gotten to shower yet. So I threw the rags and the furniture polish in my bedroom and answered the door. I was able to sneakily clean the kitchen after they arrived under the guise of cooking the chili, which was nowhere near finished yet. Then I excused myself and took a shower while Dan's parents brought in their stuff from the truck. We had a late supper and watched "Seabiscuit" on DVD. Went to bed early for me so I could get up for the big day Saturday.
The alarm went off at 7am, almost unheard of for me. Dan had generously offered to participate in the Sjogren's Walkabout with me, so he had to get up too. Suprisingly, Dan's parents decided to go too. The walk/fundraiser took place in a mall across town. After I registered, I talked with several of the people I recognized from support group meetings. The turnout wasn't too bad....I think a hundred or so? Not bad for the first-ever such event in the US. We had a DJ and a mascot, and the Sjogren's Foundation CEO was there from Washington, DC. A local TV reporter told us how, after attending a support group meeting for a story, she realized the symptoms described applied to her mom, who had been ill for several years. After she told her mom about it, the woman went to the doc and got tested, and low and behold, she did have Sjogren's. Anyway, the walk began at 9:30. It was two miles, which was two laps around the mall, but you could stop after one lap if you thought it was too far. I took my time, talking with some of the other walkers, and discovered that one mile was much easier and shorter than I thought. I decided that since this was a special occasion and I wasn't hurting much, I'd go for two. Halfway through the second lap, I suddenly got hit by the sledgehammer of fatigue, but I was already at the opposite end of the mall, so I had to finish the distance. I was the last one to complete the walk. The fundraising goal for the event was $5000, but we generated $15,000 that day! Is that awesome or what?
I tried to take a nap after I got home, but the phone woke me up twice, the dog woke me up twice, and Dan woke me up once. I finally gave up about 3:30 and got up to make something for lunch. Went over to my sister's around 7pm, and she generously offered to drive us to the comedy club. Had to stand in line for quite awhile because many of us had tickets for the show that had been cancelled and had to exchange them at the will call desk. We got pretty decent seats, to the left of the stage on an elevated wing in the front row. There were some people smoking, but it was fairly far off from where I was sitting, and I wore my air purifier, which helped. The opening act was pretty cool....I think his name is Bruce Daniels? Anyway, his routine is fairly low-key to start and just gets funnier and funnier. And Margaret Cho kicked ass! She looked great! Her material was all very current, straight out of the headlines and the events of her own life in the past few weeks. She must update her routine every single day...not everyone can be that spontaneous. Amazing how she is able to say a lot of the things I think and still make it all hilarious. She got the most enthusiastic standing ovation I have ever seen at that comedy club. I was soooo happy I went, but to say I was exhausted when I got home would be a gross understatement. I had a bowl of leftover chili and fell asleep on the couch almost before I finished it.
Sunday I was awakened by the phone again. I was an utter zombie, and I knew better than to even attempt to go shopping with Dan and his parents. I asked them to go without me and to come back in time for me to make dinner for everyone. I made chicken Parmesan, chicken-flavored brown rice and salad with home-made dressing. Then Dan's parents wanted me to see "Passion of the Christ" at the theatre. I complied. I may be one of the wordiest people in the world, but I don't know what to say about that movie. I don't know what to think, either. Maybe I never will. I don't regret having seen it, but I do know that I will never watch it again. I don't feel I need to receive its message more than once. After we got home, I arranged my new bookcase and went to bed about an hour and a half earlier than usual.
Yesterday, I was still dragging but went to aquacise anyway. Got another nasty attack of vertigo in the pool which lasted about an hour after the class ended. Wanted desperately to go back to bed, but Dan's parents wanted to take me to lunch, and I knew if I lay down I wouldn't be able to get up in time. We went to Boston Market because I knew what I could eat there. I went straight to work from there. I must have looked just as dead as I felt because my co-workers were asking if I was really tired or something. I fell asleep while proofreading.
Today, I had a somewhat early gyno appointment. It took much longer than I expected. I was so tired I nearly began to cry at the appointment. Dan's parents headed to their religious conference shortly after I got home. I had to go back to bed after that....I had no choice. I set the alarm, but absolutely could not get back up. I struggled for half an hour before finally dragging my nearly comatose self downstairs. Dan got back from his doc appointment, took one look at me and asked if I would be going to work, and I just started sobbing. Even though I was exhausted prior to this weekend, I felt guilty for making myself worse. I really wanted to go to work, but there was just no way. I went back to bed and don't remember much of anything until 8pm. I got up feeling pretty decent and had leftovers for supper and watched "Four Weddings and a Funeral" on TV. But by 10:30, I started feeling wiped out and weepy again.
I don't know what to do. I need to be active to preserve my mobility, but every little action exhausts me. I'm starting to think this is not just the post-prednisone blues and maybe not just a flare either. I felt just like this last fall before I started the prednisone. Unfortunately, no doc can tell me whether the fatigue is permanent or not....Sjogren's can be progressive in some people and variable in others. Maybe starting my shift an hour earlier next month will be helpful....I'll get an hour more sleep before aquacise. All I know is that I cannot continue to work this way indefinitely. I will express my concerns to the rheumatologist at my appointment next week even though he has already told me there is nothing to be done for the fatigue. I am bitterly disappointed that I am unable to do more now that my pain level is down. I guess all I can do is give my upcoming new shift a chance before giving up on being able to work.
Need to go hug my hubby and my pup.
Pain level: 5
Fatigue level: 10
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