Thanks to everyone for the wonderful support earlier this week when I was feeling so overwhelmed. Two things have helped me to relax a bit.
First, I really appreciated the suggestion to forget my overwhelming to-do list and make a separate list of only what MUST be done before our vacation. I actually use this strategy every year at this time when things get crazy, but I had forgotten (thanks for the reminder, Toni!).
The other thing is that I realized I have been really hard on myself lately, setting very high goals and expectations. I don't know why this came as such an epiphany this week, but it suddenly hit me. The truth is that I've been a perfectionist and an over-achiever for as long as I can remember. I thought that CFS had taught me to ease up on myself, but it's a lesson that I sometimes forget. Old habits die hard.
In my pre-CFS life, I usually achieved whatever I set out to do through hard work and perseverance. I still fall into the trap sometimes of expecting too much from myself. Who am I kidding? I always expect too much!
It's taken me 7 years, but I've finally accepted that I need to go with the flow - energy flow, that is - and rest when I need to...I just temporarily forgot. I think financial worries were part of the problem, adding pressure to ramp up my writing and increase my meager contribution to the family income. And while it's true that money is even tighter than usual this year, it's also true that pressure + CFS = crash. I know from hard experience that the harder I push myself the less I'll be able to do. It's so counter-intuitive, isn't it?
So, I've made a conscious decision not to worry about getting more writing pitches out until after vacation and to just focus on what really needs to be done in the short term. I'm feeling more relaxed and had a pretty good week. We still have two very busy, hectic weeks ahead of us, but I feel better equipped emotionally to deal with that.
Hope everyone has a great 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, May 29, 2009
Wednesday, May 27, 2009
Tuesday, May 26, 2009
Drowning
I hate to sound like a broken record, but I'm feeling horribly overwhelmed again. It seems that lately I just vacillate between being crashed and incapacitated and then feeling better but totally overwhelmed with all that's not getting done.
This time of year is always so busy, with all sorts of school functions, end of soccer season, plus trying to pull together last-minute plans for our vacation road trip (only 3 weeks left!). Of course, there's still my writing work (which is seriously stalled) and the house and yard which are both looking more and more like the set of The Munsters.
I tried to help my husband with the yard this weekend, but I can only manage about 15-20 minutes of weeding without causing a crash the next day. That doesn't make much of a dent in our large, jungle-like yard.
It's the same old CFS story. Just tackling the basic maintenance tasks each day - cooking, dishes, laundry, kids - takes up every bit of my limited energy. There's not much left for all the rest of what I need and want to do.
I don't mean to whine. Sometimes I feel like I've got this CFS life thing down and sometimes I feel like I'm drowning. This is just one of the drowning times. But I'm trying to take a positive approach to digging out (I guess I'm mixing my metaphors?). I sat down this morning and blew through the 80 e-mails that had piled up, then tackled a few short tasks. It's starting to feel like I'm making some slow progress.
This time of year is always so busy, with all sorts of school functions, end of soccer season, plus trying to pull together last-minute plans for our vacation road trip (only 3 weeks left!). Of course, there's still my writing work (which is seriously stalled) and the house and yard which are both looking more and more like the set of The Munsters.
I tried to help my husband with the yard this weekend, but I can only manage about 15-20 minutes of weeding without causing a crash the next day. That doesn't make much of a dent in our large, jungle-like yard.
It's the same old CFS story. Just tackling the basic maintenance tasks each day - cooking, dishes, laundry, kids - takes up every bit of my limited energy. There's not much left for all the rest of what I need and want to do.
I don't mean to whine. Sometimes I feel like I've got this CFS life thing down and sometimes I feel like I'm drowning. This is just one of the drowning times. But I'm trying to take a positive approach to digging out (I guess I'm mixing my metaphors?). I sat down this morning and blew through the 80 e-mails that had piled up, then tackled a few short tasks. It's starting to feel like I'm making some slow progress.
Friday, May 22, 2009
Need a Laugh?
Sorry for the silence this week. I've been completely flat for the past 3 days, so haven't gotten anything at all done other than reading some good books (thank goodness for books!!)
I ended up having a nice weekend last week and I wanted to write about some insights I had...but it looks like that will have to wait for next week. I felt pretty good on Monday and a little run-down on Tuesday, but I went ahead with my plans to go to Target and Trader Joe's for a major stock-up trip. Big mistake! Jamie's been feeling bad all week, too, so I'm also wondering if there's a virus lurking around, triggering our CFS to flare up. Who knows?
Meanwhile, I thought I'd just post a few funny links that gave me some much-needed laughs this week:
I'm going to try going out to lunch with my mom (she's visiting and heading home in a few hours). Hope you all have a fun and relaxing holiday weekend!
I ended up having a nice weekend last week and I wanted to write about some insights I had...but it looks like that will have to wait for next week. I felt pretty good on Monday and a little run-down on Tuesday, but I went ahead with my plans to go to Target and Trader Joe's for a major stock-up trip. Big mistake! Jamie's been feeling bad all week, too, so I'm also wondering if there's a virus lurking around, triggering our CFS to flare up. Who knows?
Meanwhile, I thought I'd just post a few funny links that gave me some much-needed laughs this week:
- Awkward Family Photos - I laughed so hard at some of these, I cried!
- Signs of the Times
- Cake Wrecks
I'm going to try going out to lunch with my mom (she's visiting and heading home in a few hours). Hope you all have a fun and relaxing holiday weekend!
Friday, May 15, 2009
Good-bye to This Week
Or perhaps I should say "good riddance!" My week started out great, after enjoying my family's visit and definitely feeling a little better. I actually began to exercise again this week - in tiny, tiny increments. On Tuesday, I did 13 push-ups, 11 flys, and 20 pull-downs - all at different times of the day with lots of rest in between. On Wednesday, my muscles were so sore I could barely move, and I was a little run-down, but OK.
The rest of the week just went downhill, though. It wasn't anything that happened but more just my state of mind. I've been feeling hopeless and overwhelmed and lacking in confidence and motivation.
In part, everything about writing feels futile right now. It's a terrible time to be a freelancer. Even in good economic times, freelance writing is a tough job. You spend so much time and effort writing pitches and send off dozens of them with high hopes, feeling like you came up with the perfect idea for that publication. Then, you wait - often many months - for a reply. If you're lucky, you get a single line on a form rejection sent back in your SASE. Lots of pubs don't even bother doing that.
I'm also frustrated by my very limited energy. With CFS, I have such limited productive time each day, and, if I don't do something concrete toward my goals - like sending out another pitch - then I feel like I've wasted my precious energy. In all honesty, the writing I'm enjoying the most right now - this blog and my book reviews - is writing that I don't get paid for, so I feel guilty for time spent on my blogs.
Several times this week, I had the urge to go outside and RUN. Hard exercise is such a great remedy for these kinds of feelings - to go out and pour all your energy into working and sweating and completely clear your mind. Of course, that's a pipe dream. I was thrilled this week when I managed to walk around my neighborhood without stopping to rest (for the first time in many months).
Ken and the boys are at soccer practice this evening. I'm home alone, and the other thing I'd love to do is to drink an ice cold beer or a nice glass of red wine. But, of course, that's out, too. Besides the fact that alcohol makes my CFS worse, it's a major no-no for Lyme (the little Lyme buggers feed on alcohol).
So, I've made a glass of decaf mint iced tea, but it's not quite the same. I think part of my problem is simply loneliness and isolation. Even though I felt better this week, I spent every day at home alone, trying (without much success) to get some writing done.
I'm glad the week is over, but I'm honestly not looking forward to the weekend, either. Maybe just pouring out my feelings here will help some. Thanks for listening.
The rest of the week just went downhill, though. It wasn't anything that happened but more just my state of mind. I've been feeling hopeless and overwhelmed and lacking in confidence and motivation.
In part, everything about writing feels futile right now. It's a terrible time to be a freelancer. Even in good economic times, freelance writing is a tough job. You spend so much time and effort writing pitches and send off dozens of them with high hopes, feeling like you came up with the perfect idea for that publication. Then, you wait - often many months - for a reply. If you're lucky, you get a single line on a form rejection sent back in your SASE. Lots of pubs don't even bother doing that.
I'm also frustrated by my very limited energy. With CFS, I have such limited productive time each day, and, if I don't do something concrete toward my goals - like sending out another pitch - then I feel like I've wasted my precious energy. In all honesty, the writing I'm enjoying the most right now - this blog and my book reviews - is writing that I don't get paid for, so I feel guilty for time spent on my blogs.
Several times this week, I had the urge to go outside and RUN. Hard exercise is such a great remedy for these kinds of feelings - to go out and pour all your energy into working and sweating and completely clear your mind. Of course, that's a pipe dream. I was thrilled this week when I managed to walk around my neighborhood without stopping to rest (for the first time in many months).
Ken and the boys are at soccer practice this evening. I'm home alone, and the other thing I'd love to do is to drink an ice cold beer or a nice glass of red wine. But, of course, that's out, too. Besides the fact that alcohol makes my CFS worse, it's a major no-no for Lyme (the little Lyme buggers feed on alcohol).
So, I've made a glass of decaf mint iced tea, but it's not quite the same. I think part of my problem is simply loneliness and isolation. Even though I felt better this week, I spent every day at home alone, trying (without much success) to get some writing done.
I'm glad the week is over, but I'm honestly not looking forward to the weekend, either. Maybe just pouring out my feelings here will help some. Thanks for listening.
Tuesday, May 12, 2009
International CFS/ME Awareness Day
Today is International CFS/ME Awareness Day. Here are some simple things you can do to help educate the world about CFS, even if you can't leave your house:
You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.
Spread the word!
- Participate in the CFIDS Association's Virtual Lobby Day. This helps to spread the word about CFS to your local media and your elected officials. I just finished all 3 of the actions listed, and it only took about 10 minutes (you can also choose to just do 1 or 2 of the actions). This really works! Last year, both our local town newspaper and our city newspaper published the letters I sent through the CAA's Action center. I also received responses from my Senators and Representative, as well as a thank you note from a local representative who has a family member with CFS. It works and it's easy - try it!
- Tell your friends and family about CFS. I plan to post a small note about Awareness Day on Facebook today. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:
- About CFIDS by the CFIDS Association
- ME/CFS Facts by Phoenix Rising
- The CDC's information on CFS
- My own article, CFS: An Invisible Illness, published last fall on Lively Woman
You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
- iGive
- Good Shop
- CFIDS Association's Shop and Give links
I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.
Spread the word!
Monday, May 11, 2009
Victory!
OK, it's a small victory, but we celebrate them when we can, right?
I not only made it through my weekend with a house full of family (10 of us!), but I actually felt very good on Sunday and was able to enjoy my family and Mother's Day. Hooray! It was a lot of work, but we had a great time. I know I've said this before and been wrong, b
ut I really think I have finally gotten through the worst of my Lyme treatment herx and have come out the other side.
My mom and her husband came to visit from Connecticut for the weekend (it was also my mom's birthday), along with my sister and her family. The four cousins had a great time together, as you can see here. On Sunday, I even felt well enough to take everyone to our local nature center for a short hike and some prime tadpole hunting! My little niece and nephew had a blast catching and releasing tadpoles (though my 3-year old
nephew kept trying to touch them!)
We also gained two new family members this weekend (hopefully low-maintenance ones). One of my niece and nephew's pet mice recently had babies (12 of them!), so they brought two to our house for Jamie and Craig. I have to admit they're very cute, and my sister assures me they're both females! My 7-year old niece told us to be very careful because "they fall in love very easily at this age."
On Sunday, with all ten of us sitting in the family room, opening Mother's Day gifts, my niece said, "Why can't we all just live together all the time?" Family times like these mean so much to all of us, and I was thrilled to be able to enjoy it. I hope all of you other moms out there had a great Mother's Day, too!
I not only made it through my weekend with a house full of family (10 of us!), but I actually felt very good on Sunday and was able to enjoy my family and Mother's Day. Hooray! It was a lot of work, but we had a great time. I know I've said this before and been wrong, b
ut I really think I have finally gotten through the worst of my Lyme treatment herx and have come out the other side.My mom and her husband came to visit from Connecticut for the weekend (it was also my mom's birthday), along with my sister and her family. The four cousins had a great time together, as you can see here. On Sunday, I even felt well enough to take everyone to our local nature center for a short hike and some prime tadpole hunting! My little niece and nephew had a blast catching and releasing tadpoles (though my 3-year old
nephew kept trying to touch them!)We also gained two new family members this weekend (hopefully low-maintenance ones). One of my niece and nephew's pet mice recently had babies (12 of them!), so they brought two to our house for Jamie and Craig. I have to admit they're very cute, and my sister assures me they're both females! My 7-year old niece told us to be very careful because "they fall in love very easily at this age."
On Sunday, with all ten of us sitting in the family room, opening Mother's Day gifts, my niece said, "Why can't we all just live together all the time?" Family times like these mean so much to all of us, and I was thrilled to be able to enjoy it. I hope all of you other moms out there had a great Mother's Day, too!
Thursday, May 07, 2009
How Did I Get Here?
Most of the time, I accept this strange new world I live in. I may not like it, but I've come to a point where I understand my limitations, and I've become accustomed to the routines and restrictions of my new life. I don't think twice about saying no to things that are beyond my level of stamina or taking a daily nap or even constantly assessing how I feel in order to know what I can and can't do. But every once in awhile, the bizarre reality of life with CFS hits me suddenly. I had a moment like that this week.
I was reading a magazine filled with articles on fitness and exercise (I know, I know - why torture myself? I am always browsing magazines looking for new markets for my writing). Anyway, I'm looking at all these tips on health and exercise when the absurdity of my current life just hit me like a slap in the face.
How did I get here? How did I go from a very active, highly energetic and fit woman to my current state lying here on the couch, aching all over? It's crazy, isn't it? Absolutely senseless. There's simply no way to explain it in logical terms, despite all my research and reading on the physiology of CFS. It defies rational explanation.
I actually felt great yesterday - really great! Craig went back to school after two days home sick (was it only 2 days?), and I actually went shopping. I've been trying to go to Kohl's to return some things for over 6 months. How sad is that? Six months. I was so excited to go to Kohl's! I felt good all day, but I did way too much. I find it so hard to not overdo on those rare good days.
So, today, I'm back on the couch, aching and worn out and having to ditch all my plans for the day. What a strange way to live.
I was reading a magazine filled with articles on fitness and exercise (I know, I know - why torture myself? I am always browsing magazines looking for new markets for my writing). Anyway, I'm looking at all these tips on health and exercise when the absurdity of my current life just hit me like a slap in the face.
How did I get here? How did I go from a very active, highly energetic and fit woman to my current state lying here on the couch, aching all over? It's crazy, isn't it? Absolutely senseless. There's simply no way to explain it in logical terms, despite all my research and reading on the physiology of CFS. It defies rational explanation.
I actually felt great yesterday - really great! Craig went back to school after two days home sick (was it only 2 days?), and I actually went shopping. I've been trying to go to Kohl's to return some things for over 6 months. How sad is that? Six months. I was so excited to go to Kohl's! I felt good all day, but I did way too much. I find it so hard to not overdo on those rare good days.
So, today, I'm back on the couch, aching and worn out and having to ditch all my plans for the day. What a strange way to live.
Monday, May 04, 2009
A New Week
Last week was filled with CFS's characteristic ups and downs. I crashed big-time after my trip to NJ on Tuesday and spent Wednesday entirely horizontal. I was a bit better Thursday and Friday but still not well enough to manage a trip to the grocery store. I was working to put together a photo book for my mother for Mother's Day. It ended up being a HUGE project! I spent 3 days at the computer, scanning older photos, uploading photos to Snapfish, then designing the book. It was a lot of work, but it turned out great - 50 pages with 200 photos! I can't wait for the weekend - my family is coming here to visit us for a change.
Amazingly, after all that computer work, I felt really good on Saturday! Maybe it was because of all the extra energy-producing supplements I popped on Friday and the liter of Gatorade I drank, in an effort to avoid another crash. I ended up with diarrhea from the extra supplements, but I had some energy!
Craig is home sick today - looks like a bad cold. We have a busy week (though we may have to cancel some stuff if Craig is still sick), but I also need to try to rest up for the weekend. With so much to do, I'll have to keep reminding myself of that!!
Amazingly, after all that computer work, I felt really good on Saturday! Maybe it was because of all the extra energy-producing supplements I popped on Friday and the liter of Gatorade I drank, in an effort to avoid another crash. I ended up with diarrhea from the extra supplements, but I had some energy!
Craig is home sick today - looks like a bad cold. We have a busy week (though we may have to cancel some stuff if Craig is still sick), but I also need to try to rest up for the weekend. With so much to do, I'll have to keep reminding myself of that!!