Here is one moment from a Golden Girls show that deals with Chronic Fatigue Syndrome (CFS). You can watch the whole show in parts on YouTube - "The Golden Girls - Sick and Tired." It was a 2 part show that aired in September 1989 (episodes 103 & 104 in season 5). It touches on issues that are still true today which, sadly, includes a lack of understanding and awareness. We need to work hard to raise the awareness.
EDIT: Sorry - YouTube video was removed.
Spring break was last week, and Jessica had a really good spring break - almost like a "normal" teenager! ... At least until the end of the week.
Spring Break consisted of:
I'm happy and honored to report that I was awarded The Happiness Award. My friend, Sue Jackson, of Learning to Live With CFS passed this award on to me a couple of days ago. Check out her very informative, encouraging and excellent blog with all kinds of tidbits throughout. So, thank you Sue!
Now for my 10 (or so) things that make me happy:
Jessica spent the day in bed yesterday not feeling well. That's what I get for bragging about how well she was doing!
Jessica did so well this weekend. The youth retreat, rehearsals, Dinner Theater, church Sunday, then shopping with friends even... And still was ok to go to school, but ended up with a bad headache Monday night. So, I was thinking she was doing good! But it hit yesterday (Wednesday). She was't even getting out of bed. She was weak, her throat hurt, and she kept coughing. She slept all morning. I brought lunch up to her, and she laid back down again. Jessica slept till after 3:00 but was finally upright early in the evening and made it downstairs to "her chair" to join us and watch tv. Even though she crashed, she said the weekend was worth it!
Today she's back in school and doing better.
Jessica held up very well through her busy busy week. It was such a busy week and active week. Weekend before last was the youth retreat; then last Thursday and Friday nights were Dinner Theater rehearsals, which started again Saturday at noon and then the Dinner Theater that night. And one of her skits was an aerobic skit!! And after that, Sunday she went to church with us, then to see my grandmother for her 95th birthday, and then she went out shopping with friends!! She's held up so well that it makes me think she's almost normal. Is she well?
Jessica was tired Monday morning, and I asked her if it was daylight savings tired or other, and she said she didn't think it was daylight savings time. So I asked... "How's your throat?"... to which she replied that it actually was hurting a little bit. (Her throat always hurts when she gets tired or crashes.) She made it through the day ok, but ended up with a bad headache. Then tonight (Tuesday) when I asked her how she was, she said "ehhh" [translation: so-so] - She said she's been coughing.
Though I may want her to be well, and especially when she's going through such a good streak, but I don't have anything to complain about right now. She's doing ok!
Jessica had one day last week that she had a bad headache and stayed home for half the day. Sunday night of this week she woke me up in the middle of the night with leg pains. I took her some ibuprofen and rubbed her leg for half an hour. Tuesday she texted me at 2:15pm saying she didn't feel good - really tired and her ear was hurting (not sure what was going on with her ear). I called and checked her out of school early that day. She had slept in her 3rd block class and during LUNCH! And then came home and slept for 2-1/2 hours. She seems to have held up ok since then though.
This next week plus is going to be the test, as she's got a youth retreat this weekend and a dinner theater the next weekend (which will include rehearsals during the three days before). But she's going to be having fun if she can make it through it all!
Jessica wasn't feeling well yesterday, and stayed in bed all day until dinner. She was tired, but also she was stopped up and sneezing, so she thinks it's a "normal" sickness. I don't think so. I think it's from over-doing.
She signed up to act in the Dinner Theater at church that our youth is putting on. They had rehearsal last weekend including a lock-in rehearsal Friday night. And then during the snow, she and Matthew decided to walk down to Sonic for lunch one day, and realized it was a little longer and harder walk than they imagined it to be trudging through the slush and snow with it raining on them.
So - she's been pushing her limits.
We had a talk tonight. The AP classes are hard. It seems that she was homebound for a year and a half, and then went back to school and saw what all she was missing... We had tears tonight, and she said she's "tired of it." Basically she's tired of being sick and "not being able to do anything." I actually have been feeling like I'm going through the empty nest syndrome early because I feel like she's been doing quite a bit now that she can drive. But she mentioned an example of - when she went skating with her friends I told her to be home earlier than her friends (9:30), and she can't stay up as late as her friends, and she wants to dance, etc... In other words, she can't do things like a "normal" teenager. I had been seeing this in her - that she's trying to forget that she has CFS and trying to be normal. And pushing her limits in the process. She said she would "push through it," but I'm not sure what that means. Any suggestions for moving on, dealing with it, and accepting it?
Though I think it was better just from venting.
Jessica is a fun-loving friend-to-all person. Beautiful inside and out, and wanting to be there for her friends. She has many friends, which leads to many opportunities for social activities. She doesn't like to stay inside all the time, but that could be partly due to the fact that she had to stay in all the time from January 2008 until the summer of 2009 - because of her illness. But, now that she's feeling better than she was and now that she's 16 and driving... There's the issue of - how do we balance having fun with not doing too much to end up in a crash.
Jessica still has Chronic Fatigue Syndrome (CFS) and still needs to pace her activities, but wants to be a normal teenager. As her mom, I'm feeling like I need to put some limits on the weekend activities. So, therein lies the battle. And it's hard. Very hard. How do you balance being a teenager (or being a mom of a TwCFS) and pacing life because of CFS?
Jessica evidently couldn't go to sleep last night and didn't sleep well. This morning Steve couldn't get her to budge at all. She didn't wake up. And he figured if she hadn't slept, then she probably needed to sleep in, but then there was that thought about the 3 days a semester she doesn't need to miss to be able to skip semester exams, and she's missed one so far. So at almost 7:00a.m. I tried again, and when I got her alert enough, she didn't seem sure that she felt like getting up, but she managed to get up and get there on time. She texted me later and said she felt "so-so." She came home tired still.
We have ice or snow in the forecast tonight. It would be kind of nice if we did have a snow day tomorrow so she can sleep in!
On my last post, I said I guess we'll find out if the long evening of ice skating was a good decision...
Monday morning of this week, we could not get Jessica out of bed. She didn't budge. Her throat hurt, head hurt, her head was "stuffy," and she was really tired. She stayed in bed almost all day. I took her lunch up to her, and she ate in bed. She finally got up around 3:30; her head had quit hurting, but her throat still hurt and she was still tired. It was definitely a crash. I believe this was due to the fun night of ice skating, but also due in part to some stress Sunday night caused by teenage drama.
Tuesday she still had a sore throat and tired, but was back at school. Wednesday she wasn't too bad, and even made it to dinner with her lifegroup leader and to church that night, after promising me that she would have a calm mostly-at-home weekend the next weekend. The movie Julie & Julia is supposed to be coming in the mail today, so we can have a relaxing movie night tonight!
We had a normal Saturday today. We all straightened up the house a little before my parents came over. Jessica stayed home and worked on a school project while Steve and Matthew and I went grocery shopping and to Game Stop (that's why Matthew went along).
Jessica had asked what we were going to do tonight. Lately she hasn't wanted to stay around the house. Maybe it's making up for being around the house so much over the past two years. (Wow - It's been 2 years this past week!) But mostly I think it's being a teenager and being able to drive now. I actually miss time with her, but that's just me getting used to having a 16 year old.
So, tonight on cue, she came down asking if she could get some friends from church together and go to the ice skating rink. They met there at 6:00, and I told her to be home by 9:00. She called at 8:30 saying they were having so much fun (and I could hear in her voice how much fun they really were having) and could she stay for a little long - maybe till 9:00? I love that she has so many friends now, is able to get out and be with friends, and the fact that she was having fun. So, as it turned out she stayed till 9:30. I guess we'll see if that was a good decision in a couple of days.
This skating party got me thinking about Matthew's birthday skating party in July of 2008, 7 months after Jessica got sick. She did put on roller skates that day and I think she went around the rink once, but that was all. She held out for a couple of hours, and then she and I had to leave before he was through having as much fun as he could with his friends.
I am so glad that she is able to do things now, can be more active, have more of a life, and enjoy being with her friends. We've come a long ways since then, and we are thankful!
School started back today. Jessica is going to school full time with 3 AP classes. She's taking AP English, AP World History, AP Environmental Science, and Orientation to Teaching. The three AP classes could be hard, as they are supposed to be concurrent credit for college. This semester might need a little more focus. We'll see how it goes.
