You know that old adage, "Feed a cold, starve a fever"? Well, I feed my CFS crashes! For reasons I don't understand, when I'm badly crashed, I want to constantly EAT. I spent the past two days on the couch with a classic CFS crash - sore throat, achy, exhausted - and I noticed again that I have an urge to eat when I'm that sick. Is it a biological thing, like my body isn't producing enough energy so I crave more fuel? Or maybe it's just an emotional thing, that I want to eat favorite foods for comfort? Or maybe I'm just bored! I don't know. Anyone else crave food (or certain foods) when they crash?
Anyway, I'm feeling a lot better today. I think this was "just" a regular crash and not a new herx from Lyme treatment. Both boys had some congestion earlier this week, so there was probably a virus lurking around to trigger my crash. This is one of the biggest improvements I've seen in the past year - fewer crashes and when I do have one, it doesn't last very long, thank goodness.
Time for my nap. We have a busy weekend coming up, with my mom and her husband coming to stay with us and celebrate Superbowl Sunday (no school on Monday, so the kids get to stay up for the whole game for the first time ever!)
Have a nice weekend!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Friday, January 30, 2009
Wednesday, January 28, 2009
Snow (and ice and rain) Day!
The boys were thrilled to FINALLY get a snow day today. Delaware hasn't had much snow so far this winter. We only got a few inches last night, and it turned to ice, then rain today, but they made the best of it. They spent the whole day outside, building this cool fort
(Craig is straddling the edge and Jamie's in the middle). I hope the rain doesn't wash it away too soon. I also hope that neither of them crashes from the exertion, but sometimes you just have to let them have fun! Jamie's chugging Gatorade, and Craig (who is REALLY sick of Gatorade) is having a Cup of Noodles. Those things have 1180 mg of sodium!! Wow, that should do the trick. Keep your fingers crossed that he makes it to school tomorrow. Jamie's school is closed anyway tomorrow, so I'm not worried about him (he already missed Monday after an active weekend).
I've spent our snow day flat on my back on the couch. I'm feeling crummy - achy, sore throat, the works. It might be from the trip to Target I made yesterday (always a big event for me!), but I'm worried it's something else. The Lyme doctor was pleased I was doing so well and asked me to try a supplement that's antibacterial. He said if I respond to it, it could mean there is still some lingering Lyme or some other co-infection not identified in the blood tests. I started it earlier this week and haven't been doing too well since. I'm pretty bummed. I don't know if I can take another multi-week or -month run of herxing. But, of course, if there is any lingering infection, I want to get rid of it. I hope this is just from the shopping...we'll see. At least I've had plenty of time to read today.
(Craig is straddling the edge and Jamie's in the middle). I hope the rain doesn't wash it away too soon. I also hope that neither of them crashes from the exertion, but sometimes you just have to let them have fun! Jamie's chugging Gatorade, and Craig (who is REALLY sick of Gatorade) is having a Cup of Noodles. Those things have 1180 mg of sodium!! Wow, that should do the trick. Keep your fingers crossed that he makes it to school tomorrow. Jamie's school is closed anyway tomorrow, so I'm not worried about him (he already missed Monday after an active weekend).I've spent our snow day flat on my back on the couch. I'm feeling crummy - achy, sore throat, the works. It might be from the trip to Target I made yesterday (always a big event for me!), but I'm worried it's something else. The Lyme doctor was pleased I was doing so well and asked me to try a supplement that's antibacterial. He said if I respond to it, it could mean there is still some lingering Lyme or some other co-infection not identified in the blood tests. I started it earlier this week and haven't been doing too well since. I'm pretty bummed. I don't know if I can take another multi-week or -month run of herxing. But, of course, if there is any lingering infection, I want to get rid of it. I hope this is just from the shopping...we'll see. At least I've had plenty of time to read today.
Monday, January 26, 2009
Favorite Books of 2008
If you like to read, check out my list of favorite books I read in 2008 at my book blog. And I'd love to hear about your favorite books!
Sunday, January 25, 2009
Research Paper Announces Test for CFS
I saw a very interesting new paper published recently in the UK, defining CFS as a mitochondrial dysfunction and identifying a test doctors can use to help diagnose it. Personally, this seems to be a bit of an over-simplification to me, not addressing the immune system and nervous system dysfunction, but it's still a huge step forward in viewing CFS as a real, physical ailment with characteristics that can be tested.
My favorite line in the explanation of the study:
"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever."
My favorite line in the explanation of the study:
"A useful analogy is to compare your body with your car. The mitochondria represent the engine of that car, the diet represents the fuel that goes in the tank, the thyroid gland represents the accelerator pedal and the adrenal gland the gearbox of that car. Using cognitive behaviour therapy or graded exercise to treat a patient with CFS/ME is akin to beating up the driver of the car when actually the car needs a re- conditioned engine, suitable fuel in the tank, resetting of the accelerator pedal, a new gear box or whatever."
Wednesday, January 21, 2009
Goodbye 2008, Hello 2009
I know it's a little late for New Year stuff, but I got a slow start this year. So, this week, I finally had time to sit down for my annual review of last year and look forward to a new year. I don't set resolutions, but I do like sitting down at this time of year to write a couple of pages about the year just past and set goals for the new year. I've been doing this for about 10 years, and it helps me to put things in perspective and to set priorities.
All in all, despite spending the past 5 months battling Lyme disease, 2008 was mostly a good year for me. During the first 7 months of the year, I felt better than I had in the past 7 years, since first getting sick with CFIDS, thanks to anti-viral treatment and low-dose naltrexone. Best of all, I was able to be more active and do more, and it was a wonderful treat after being sick for so long. I still experienced periodic crashes but less often and much less severe.
Of course, the past 5 months have been rough, with Lyme, but hopefully that's behind me now (I'm still on antibiotics but am Lyme symptom-free now). I'm looking forward to a good 2009.
I also set goals for 2009 this week. My perpetual problem - even before CFS - is trying to do too much. I always have lots of ideas and plans but have trouble finding the time and energy to tackle all of them. Obviously, this problem was greatly exacerbated with CFS! Last year was a breakthrough for me because I felt so much better. I was able to start lots of new writing projects and do some things I'd been planning for years. I didn't see a lot of results in 2008 (or new income), partly because I was so sick the last 5 months, but I got a lot of things started that I hope to follow-up on this year. So, I'm feeling a bit overwhelmed by the sheer volume of what I'd like to do but mostly optimistic about the new year.
And that horrible mess pictured here? Ah, yes, that's my desk, covered with stacks of paper. First of all, I hope to get it cleared off, so I can start the year a bit more organized. I posted the picture here so I'd be shamed into doing something about it! I finally got a start today. So, I'm feeling ready to start the new year!
All in all, despite spending the past 5 months battling Lyme disease, 2008 was mostly a good year for me. During the first 7 months of the year, I felt better than I had in the past 7 years, since first getting sick with CFIDS, thanks to anti-viral treatment and low-dose naltrexone. Best of all, I was able to be more active and do more, and it was a wonderful treat after being sick for so long. I still experienced periodic crashes but less often and much less severe.
Of course, the past 5 months have been rough, with Lyme, but hopefully that's behind me now (I'm still on antibiotics but am Lyme symptom-free now). I'm looking forward to a good 2009.
I also set goals for 2009 this week. My perpetual problem - even before CFS - is trying to do too much. I always have lots of ideas and plans but have trouble finding the time and energy to tackle all of them. Obviously, this problem was greatly exacerbated with CFS! Last year was a breakthrough for me because I felt so much better. I was able to start lots of new writing projects and do some things I'd been planning for years. I didn't see a lot of results in 2008 (or new income), partly because I was so sick the last 5 months, but I got a lot of things started that I hope to follow-up on this year. So, I'm feeling a bit overwhelmed by the sheer volume of what I'd like to do but mostly optimistic about the new year.
And that horrible mess pictured here? Ah, yes, that's my desk, covered with stacks of paper. First of all, I hope to get it cleared off, so I can start the year a bit more organized. I posted the picture here so I'd be shamed into doing something about it! I finally got a start today. So, I'm feeling ready to start the new year!
Thursday, January 15, 2009
Life Goes On
We're back home after driving to Rochester, NY, for my great-uncle's funeral. It was a rough trip because my 11-year old son, Craig, got sick with a stomach virus while we were there. Poor kid - it's awful to be that sick when you're away from home.
I'm glad we went, though. It was good to be with my family, and I think it's so important to expose kids to the traditions and rituals surrounding a family death. It's good for them to see that life goes on and to experience the coming together of family to celebrate someone's life. We looked at old family pictures (yes, I finished the slideshow in time!), told stories, shared memories, and even laughed. After visiting hours at the funeral home, my whole extended family (what's left of us) went to a Ukrainian restaurant for dinner. My great-grandparents came to the U.S. from the Ukraine, and my great-uncle Charlie was the last of their kids. It felt right to be celebrating his life with traditional foods.
We don't live near any of our family, so it's extra-important to me to include my kids in family traditions and to show them how to draw comfort from family when you lose someone. Unfortunately, we've had too much death in our family recently. I think my Uncle Charlie was the 9th person we've lost (in my family and in Ken's) in the past 6 years. I hope that these experiences will help my kids when they're faced with the death of someone very close to them. I was devastated for many months when my grandmother died when I was 10.
So, anyway, here we are back home, but my life still feels in limbo. How can it possibly be January 15 already?? Our house is horribly cluttered, and all of my optimistic plans to start the year off clean and organized have been put on hold. We got back Monday night at 11 pm, and Craig's birthday was Tuesday! Since then, I haven't felt well. Besides the obvious stress and extra exertion, I think I may have a touch of the stomach virus Craig had. My over-active immune system has fought off the worst of it, but I've had some stomach cramps and nausea, in addition to the CFS exhaustion and achiness. I'm able to sit up and use the laptop this morning, so I'm hoping I'll come out of this soon.
THEN, I'll start the new year off right!
I'm glad we went, though. It was good to be with my family, and I think it's so important to expose kids to the traditions and rituals surrounding a family death. It's good for them to see that life goes on and to experience the coming together of family to celebrate someone's life. We looked at old family pictures (yes, I finished the slideshow in time!), told stories, shared memories, and even laughed. After visiting hours at the funeral home, my whole extended family (what's left of us) went to a Ukrainian restaurant for dinner. My great-grandparents came to the U.S. from the Ukraine, and my great-uncle Charlie was the last of their kids. It felt right to be celebrating his life with traditional foods.
We don't live near any of our family, so it's extra-important to me to include my kids in family traditions and to show them how to draw comfort from family when you lose someone. Unfortunately, we've had too much death in our family recently. I think my Uncle Charlie was the 9th person we've lost (in my family and in Ken's) in the past 6 years. I hope that these experiences will help my kids when they're faced with the death of someone very close to them. I was devastated for many months when my grandmother died when I was 10.
So, anyway, here we are back home, but my life still feels in limbo. How can it possibly be January 15 already?? Our house is horribly cluttered, and all of my optimistic plans to start the year off clean and organized have been put on hold. We got back Monday night at 11 pm, and Craig's birthday was Tuesday! Since then, I haven't felt well. Besides the obvious stress and extra exertion, I think I may have a touch of the stomach virus Craig had. My over-active immune system has fought off the worst of it, but I've had some stomach cramps and nausea, in addition to the CFS exhaustion and achiness. I'm able to sit up and use the laptop this morning, so I'm hoping I'll come out of this soon.
THEN, I'll start the new year off right!
Saturday, January 10, 2009
On the road again...
Oh, what a week it's been! I had such good intentions of starting the new year off right - clearing off the counters and my office, reviewing 2008, and setting new goals for 2009. It's all had to be put on hold.
My great-uncle died this week. He was 92 and died peacefully in his sleep of late-stage Alzheimer's. He lived a good, long life, so that makes his death a bit easier to bear. We've lost many family members to cancer in the past few years, and those were much tougher.
I've somehow become the family chronicler of life and death, ever since I first made a commemorative DVD of photos after my godmother's death a few years ago. So, my mother and uncle have been sending me pictures, and I've been scanning and creating a DVD this week. As my uncle said, we're all getting just a little too efficient with this process. So,
I have to really hustle today to finish the photo slideshows. We leave tomorrow morning for Rochester (an 8-hour drive) for the funeral. My husband is not too thrilled to be driving to western NY (i.e. the snow belt) in January. He's a southern boy.
Here's a classic story of my Uncle Charlie: After he got Alzheimer's, he was living in assisted living, and we tried to visit whenever we were in Rochester. So, about 5 years ago, we picked him up and spent the day with him. We went to the zoo (he used to love to walk) and took him out to lunch and had a very pleasant day together. The next day, my uncle called him and said, "So, did Sue and her family come to visit you yesterday?" And my Uncle Charlie said, "No, Sue wasn't here, but I spent the day with a really nice family!" Obviously, that's the Alzheimer's talking (we DID re-introduce ourselves when we first arrived), but it also shows the kind of sweet, happy way that my uncle approached life. He had no idea who we were but enjoyed spending the day with us! He loved life and had the greatest laugh. Not a bad legacy to leave behind.
My great-uncle died this week. He was 92 and died peacefully in his sleep of late-stage Alzheimer's. He lived a good, long life, so that makes his death a bit easier to bear. We've lost many family members to cancer in the past few years, and those were much tougher.
I've somehow become the family chronicler of life and death, ever since I first made a commemorative DVD of photos after my godmother's death a few years ago. So, my mother and uncle have been sending me pictures, and I've been scanning and creating a DVD this week. As my uncle said, we're all getting just a little too efficient with this process. So,
I have to really hustle today to finish the photo slideshows. We leave tomorrow morning for Rochester (an 8-hour drive) for the funeral. My husband is not too thrilled to be driving to western NY (i.e. the snow belt) in January. He's a southern boy.Here's a classic story of my Uncle Charlie: After he got Alzheimer's, he was living in assisted living, and we tried to visit whenever we were in Rochester. So, about 5 years ago, we picked him up and spent the day with him. We went to the zoo (he used to love to walk) and took him out to lunch and had a very pleasant day together. The next day, my uncle called him and said, "So, did Sue and her family come to visit you yesterday?" And my Uncle Charlie said, "No, Sue wasn't here, but I spent the day with a really nice family!" Obviously, that's the Alzheimer's talking (we DID re-introduce ourselves when we first arrived), but it also shows the kind of sweet, happy way that my uncle approached life. He had no idea who we were but enjoyed spending the day with us! He loved life and had the greatest laugh. Not a bad legacy to leave behind.
Tuesday, January 06, 2009
Wear Bug Spray!!
Just a quick note...I went for another short hike with my friend this morning, and she called me later to say she found a tick on herself. Conventional wisdom is that you don't have to worry about ticks once there's been a solid freeze, but that is obviously not so! (at least not here in Delaware, where it doesn't stay below freezing in the winter). In fact, my friend is a veterinarian, and she says she's still seeing ticks on dogs, too.
So, be sure you and your family wear bug spray with DEET when you spend time outdoors!
My recent experience with Lyme disease may have left me a bit overcautious, but you know what they say - it's not paranoia if they're really out to get you (i.e. the ticks)!
So, be sure you and your family wear bug spray with DEET when you spend time outdoors!
My recent experience with Lyme disease may have left me a bit overcautious, but you know what they say - it's not paranoia if they're really out to get you (i.e. the ticks)!
Monday, January 05, 2009
Happy New Year!
I just came back from an invigorating hike with a friend - a great way to start my new year! I'm still on a double-dose of antibiotics for the Lyme disease I contracted in July, and it's still working very well. I've had almost no knee pain the past few weeks and have had great energy most days! I have a check-up with my Lyme doctor on Friday. My stamina is pretty low after being so sick for almost six months, but I started taking walks last week and am trying to slowly build up. It feels so good to be able to move again. I feel like I am back to where I was during the first six months of 2008, after successful anti-viral treatment (almost two years now on Valtrex, then Famvir) and low-dose naltrexone. I certainly still have CFS, but my energy is much better and I can do more than I could in the past 7 years, since getting CFS.
We just returned from a week visiting my in-laws in Oklahoma. It was a tough visit because my mother-in-law now lives in a nursing home due to advanced Parkinson's disease. She really hates how incapacitated she has become and wants so badly to return home, but she can no longer stand on her own. My father-in-law brought her back to the house for two visits a day while we were there. I spent the week cooking, cleaning, and shopping. I was glad to be able to help her, but we can only afford to visit twice a year. We feel pretty helpless the rest of the time.
My mother-in-law was one of the only people in my life who "got" my illness right from the start, probably because of her own struggles with Parkinson's. There are some similarities that we share - fatigue, sleep dysfunction, limited energy. Of course, she's now far worse than I am, but we still both take a nap after lunch every day. I just wish there was more I could do to help her, but it's hard from long-distance.
Our boys are doing well and had a great time in Oklahoma. They have a good fri
end who lives next door to their grandparents, so they have fun even on a visit like this when we're mostly just staying at home. Craig had a stomach virus right before we left that triggered his CFS to worsen for about two weeks. He would feel fine during the day and then crash every evening by about 6 pm. Thankfully, that ended a few days ago, and he seems back to his usual energetic self now, even in the evening. We've always celebrated New Year's Eve early - usually at 8 or 9 pm - with our boys because they need lots of sleep because of their CFS, but we set a new record this year. My mother-in-law can't make it past 7 pm most evenings now, so we did our New Year's Eve celebration at 6:30 pm!! It was still fun. And for the first time in years, I stayed up late enough to see the ball drop on TV...OK, so it was only 11 pm Central Time in OK, but it was midnight in my home time zone! I was quite pleased.
A bright spot during my visit was the chance to get together with my best friend from high school. In a very strange coincidence, both of us (from Rochester, NY) ended up marrying men from Oklahoma! She works as a physiatrist (a pain specialist) in Oklahoma City, so I get to see her twice a year when we visit. We had a wonderful dinner together. There's nothing like spending time with an old friend. In a shameless bit of promotion, I will also mention that she's written and published a Christian weight-loss book that's now available through amazon. I'm so proud of her! Check it out at the link below.
So, now I'm back home and ready to start a new year. Here's to a happy and HEALTHY 2009 for all of us!
We just returned from a week visiting my in-laws in Oklahoma. It was a tough visit because my mother-in-law now lives in a nursing home due to advanced Parkinson's disease. She really hates how incapacitated she has become and wants so badly to return home, but she can no longer stand on her own. My father-in-law brought her back to the house for two visits a day while we were there. I spent the week cooking, cleaning, and shopping. I was glad to be able to help her, but we can only afford to visit twice a year. We feel pretty helpless the rest of the time.
My mother-in-law was one of the only people in my life who "got" my illness right from the start, probably because of her own struggles with Parkinson's. There are some similarities that we share - fatigue, sleep dysfunction, limited energy. Of course, she's now far worse than I am, but we still both take a nap after lunch every day. I just wish there was more I could do to help her, but it's hard from long-distance.
Our boys are doing well and had a great time in Oklahoma. They have a good fri
end who lives next door to their grandparents, so they have fun even on a visit like this when we're mostly just staying at home. Craig had a stomach virus right before we left that triggered his CFS to worsen for about two weeks. He would feel fine during the day and then crash every evening by about 6 pm. Thankfully, that ended a few days ago, and he seems back to his usual energetic self now, even in the evening. We've always celebrated New Year's Eve early - usually at 8 or 9 pm - with our boys because they need lots of sleep because of their CFS, but we set a new record this year. My mother-in-law can't make it past 7 pm most evenings now, so we did our New Year's Eve celebration at 6:30 pm!! It was still fun. And for the first time in years, I stayed up late enough to see the ball drop on TV...OK, so it was only 11 pm Central Time in OK, but it was midnight in my home time zone! I was quite pleased.A bright spot during my visit was the chance to get together with my best friend from high school. In a very strange coincidence, both of us (from Rochester, NY) ended up marrying men from Oklahoma! She works as a physiatrist (a pain specialist) in Oklahoma City, so I get to see her twice a year when we visit. We had a wonderful dinner together. There's nothing like spending time with an old friend. In a shameless bit of promotion, I will also mention that she's written and published a Christian weight-loss book that's now available through amazon. I'm so proud of her! Check it out at the link below.
So, now I'm back home and ready to start a new year. Here's to a happy and HEALTHY 2009 for all of us!