A few weeks ago, I heard a program on NPR about the importance of play, and its message really got me thinking. The guest on the program has written a book about play, and he talked - as you might expect - about how important play is to children's development and how kids today don't have enough time for free play. But he also talked about the importance of play and fun in the lives of adults.
His message really stuck with me. Last weekend, I was feeling frustrated and a bit depressed because it seemed like all I do is try to "get things done", and, of course, that job is never finished! If I have any unscheduled time when I'm not rushing to take care of our family or the house or my work, I look at my never-ending list to see what else I can accomplish. Living this way leaves me feeling overwhelmed with responsibilities, constantly behind, and severely lacking in fun.
When this feeling hit me hard on Sunday afternoon, I did something about it. I went outside and threw a Frisbee with my boys. I could only manage about 20 minutes, but it worked! I had fun and played and felt much better afterwards. The problem is sustaining that kind of mindset on a daily basis.
I've been thinking - what do I do to play? I used to know how to play. My mother is like the Queen of Fun, and Ken and I spent our weekends having fun when we were first married. Things have changed, though. Somehow, our lives now seem full to bursting with responsibilities. I spent hours last evening just trying to catch up on all the paperwork for school and other necessities - field trip forms, checks to write, permission slips to sign, dates to write on the calendar. It feels like this kind of maintenance stuff has just taken over our lives - not to mention taking care of our family's basic needs, like planning meals, shopping, cooking, dishes, laundry...
I know lots of parents feel overwhelmed like this, but there's also the added challenge of living with a chronic illness. How on earth am I supposed to have time for play when I barely have enough energy to feed my family? And what does play look like when you can't do anything physical? For most people, play means activity. Before I had CFS, we made sure to go hiking at least once during the week, I took walks with friends, we played soccer in the yard with our kids, I did all sorts of things that I'm only rarely able to do now.
So, how do I play? Well, I read a lot - that's something I can do even when I'm very sick. And we spend time most evenings watching favorite tv shows or a movie on weekends (by evening I don't have the energy for anything but lying down). So, I enjoy reading, tv, and movies, but is that really play? I guess any leisure time helps. I participate in two (sometimes three) book groups when I'm able to, and I enjoy that very much. I love my weekly walks with my two closest friends, but I haven't been well enough for that in a couple of months now. I really love to play games, and my kids know that Mom is always up for a board game or card game. With the added bonus of wonderful memories of marathon game sessions with my best friend, Michelle, when I was a kid, games definitely qualify as play for me.
So, I think I do have some fun sometimes, but I could definitely use more play time in my life.
How about you? How do you play or have fun?
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.
Thursday, September 25, 2008
Friday, September 19, 2008
A Good Day
My husband is out of town, called down to Texas for an emergency trip to consult with a plant that got badly flooded in Hurricane Ike. That means I'm on my own with the kids. The worst part about that is having to get both boys to school on time because my husband normally takes care of Jamie, whose bus comes at 7 am. So, my alarm went off at 6:15 this morning, which usually portends a very tough day for me.
I was pleasantly surprised, though, to find that I felt really good this morning- not just OK, but really, truly good. I had almost forgotten what that feels like! Instead of being overwhelmed by too many plans and not enough energy to carry them out, today my goals and plans energized me, and I followed up on some things I've wanted to do for a long time.
I suspect my good fortune is due to starting a second antibiotic this week for Lyme and associated co-infections. I've been on doxycycline for 6 weeks now, and this week my doctor added Zithromax because she suspects I may also have some of the other tick-borne infections that are becoming more prevalent. I felt bad the first day (yesterday) and assumed it was a new herx reaction, then woke up today feeling like a real person! I hope this means that I'm coming to the end of my battle with Lyme disease, though I know better than to make assumptions based on only one good day!
My boys are doing well, also. This is the best start to a school year that we've had in 5 years, since Jamie became very ill with CFS and Craig first started to show symptoms. All three of us were crashed for a couple of days due to a virus last week, but Craig only missed 1 day of school, and Jamie didn't miss any (he was sickest on the weekend). In fact, Jamie hasn't missed a single day in this first month of school - definitely a record! He's also been playing soccer without crashing the next day. It seems that the increased dose of Florinef is doing the trick for him. He's now carrying two liters of Gatorade to school with him each day and drinks a third one on soccer days.
So, we're enjoying a good day here in the Jackson house, with hopefully more to come.
P.S. If you're looking for a good book to read, check out my review of The Book Thief on my book blog.
I was pleasantly surprised, though, to find that I felt really good this morning- not just OK, but really, truly good. I had almost forgotten what that feels like! Instead of being overwhelmed by too many plans and not enough energy to carry them out, today my goals and plans energized me, and I followed up on some things I've wanted to do for a long time.
I suspect my good fortune is due to starting a second antibiotic this week for Lyme and associated co-infections. I've been on doxycycline for 6 weeks now, and this week my doctor added Zithromax because she suspects I may also have some of the other tick-borne infections that are becoming more prevalent. I felt bad the first day (yesterday) and assumed it was a new herx reaction, then woke up today feeling like a real person! I hope this means that I'm coming to the end of my battle with Lyme disease, though I know better than to make assumptions based on only one good day!
My boys are doing well, also. This is the best start to a school year that we've had in 5 years, since Jamie became very ill with CFS and Craig first started to show symptoms. All three of us were crashed for a couple of days due to a virus last week, but Craig only missed 1 day of school, and Jamie didn't miss any (he was sickest on the weekend). In fact, Jamie hasn't missed a single day in this first month of school - definitely a record! He's also been playing soccer without crashing the next day. It seems that the increased dose of Florinef is doing the trick for him. He's now carrying two liters of Gatorade to school with him each day and drinks a third one on soccer days.
So, we're enjoying a good day here in the Jackson house, with hopefully more to come.
P.S. If you're looking for a good book to read, check out my review of The Book Thief on my book blog.
Monday, September 15, 2008
Adrift
That's the word that describes how I've been feeling lately. Dealing with Lyme disease for the past two months brings me back to my early emotional struggles when I was first sick with CFS. I'm feeling that same kind of sense of being disconnected from the rest of the world and from my normal life, of being on hold.
I am definitely improving with antibiotics (for Lyme), but the progress has been slower than I'd expected, with lots of ups and downs. You'd think I would be used to ups and downs after living with CFS for 6 years, but it seems that I got used to being more productive during the first 7 months of this year, while I was feeling better than usual. Now, I'm back to not being able to get much done, and it's so frustrating! When I do have a good day, I scramble to get everything done and end up feeling worn out again - sound familiar?
I'm especially frustrated in my writing career. I started this year with some goals to expand into new markets and do more travel writing and book reviews. I really enjoy writing about travel but have only published a few brief pieces previously, so I wanted to expand my efforts this year. In the first half of the year, I was feeling so much better that I was able to accomplish a lot and submit to several new magazines. But now, everything just feels stalled, and I haven't sent out anything new in months. When I do feel well, I'm so busy with catching up on stuff around the house that my writing has really been on hold since June.
My feelings of drifting and being inadequate really hit me hard this weekend, so I'm starting the new week with renewed commitment to my writing goals. I am having more good days and want to try to use my limited energy in a more targeted way, instead of just drifting around, trying to catch up all the time.
I'm pretty tired this evening, but I did manage to finally knock something off my writing to-do list this morning. I updated my family travel website. I also bought a few new magazines that feature travel articles so that when I need to rest, I can still be working toward my goals (aka market research!) I have lots of ideas on how to expand my work of reviewing children's books, too, but that's part of my problem - so many plans and so little energy!
I'm hoping my efforts will help conquer this feeling of being on hold, even though I know I still need plenty of rest and after the Lyme is eradicated (I hope), I will still be left with CFS. I need to keep reminding myself that I've been here before; I just need to re-adjust my expectations again. It's seems this is a lesson I need to keep re-learning.
I am definitely improving with antibiotics (for Lyme), but the progress has been slower than I'd expected, with lots of ups and downs. You'd think I would be used to ups and downs after living with CFS for 6 years, but it seems that I got used to being more productive during the first 7 months of this year, while I was feeling better than usual. Now, I'm back to not being able to get much done, and it's so frustrating! When I do have a good day, I scramble to get everything done and end up feeling worn out again - sound familiar?
I'm especially frustrated in my writing career. I started this year with some goals to expand into new markets and do more travel writing and book reviews. I really enjoy writing about travel but have only published a few brief pieces previously, so I wanted to expand my efforts this year. In the first half of the year, I was feeling so much better that I was able to accomplish a lot and submit to several new magazines. But now, everything just feels stalled, and I haven't sent out anything new in months. When I do feel well, I'm so busy with catching up on stuff around the house that my writing has really been on hold since June.
My feelings of drifting and being inadequate really hit me hard this weekend, so I'm starting the new week with renewed commitment to my writing goals. I am having more good days and want to try to use my limited energy in a more targeted way, instead of just drifting around, trying to catch up all the time.
I'm pretty tired this evening, but I did manage to finally knock something off my writing to-do list this morning. I updated my family travel website. I also bought a few new magazines that feature travel articles so that when I need to rest, I can still be working toward my goals (aka market research!) I have lots of ideas on how to expand my work of reviewing children's books, too, but that's part of my problem - so many plans and so little energy!
I'm hoping my efforts will help conquer this feeling of being on hold, even though I know I still need plenty of rest and after the Lyme is eradicated (I hope), I will still be left with CFS. I need to keep reminding myself that I've been here before; I just need to re-adjust my expectations again. It's seems this is a lesson I need to keep re-learning.
Tuesday, September 09, 2008
Lyme Disease & CFS
I just came from my doctor's appointment and wanted to share what's going on with me, as well as some resources on Lyme Disease. I thought I knew a lot about Lyme, but I'm learning there's a lot I didn't know. I'm very fortunate to have met someone online who just happens to live nearby and share my doctor and has struggled with Lyme and other tick-borne infections in herself and her son for many years. She's also been a Lyme support group leader for five years. She's been in invaluable source of information and support.
As of today, I have been on antibiotics (doxycycline) for a month to treat the Lyme. I've improved a little bit during that time, though not nearly as much as I had hoped for. I still have knee pain - still severe at times, especially in the evenings - and my CFS symptoms are still worse than they were before Lyme.
One thing I've learned is that Lyme and CFS are even more similar than I previously thought. My new Lyme friend explained to me that Lyme often causes viral re-activation - just like CFS! Because of this, many Lyme patients take anti-virals, like Valtrex or Famvir, in addition to antibiotics. In fact, after my first two weeks on abx, I felt worse than ever. When I learned about Lyme causing viral activation, I filled a prescription I had been holding for Famvir (my Infectious Disease doctor suggested I try it after I finished my 18 months of Valtrex on August 1). Voila! I felt much better within hours of starting the anti-viral.
I thought that joint pain was an early symptom of Lyme disease, but I've recently learned it's actually a symptom of Stage 2 or 3 Lyme disease. Here's the NIH summary of Primary Lyme Disease, Stage 2, and Stage 3. The odd thing is that knee pain was my first symptom. Normally, a person with Lyme first experiences flu-like symptoms. It's easy to see how this could be confused with the flu-like symptoms of CFS, but I actually felt great in the weeks before my knee pain started. I can only guess that my CFS-messed up immune system made me respond differently and obscured those typical early signs of Lyme.
In fact, it can be extremely difficult to differentiate between CFS and Lyme, which is why many people are misdiagnosed. To make matters even more confusing, it is not only possible but fairly common to have BOTH Lyme and CFS since Lyme is a known trigger for CFS. I've learned I'm no expert, but here are a few things that can help to distinguish between Lyme and CFS:
So, to address some of the questions I've been getting lately, here are some resources for those who want to learn more about Lyme, thanks to my friendly Lyme expert:
Resting and waiting...something I should be used to, right?
As of today, I have been on antibiotics (doxycycline) for a month to treat the Lyme. I've improved a little bit during that time, though not nearly as much as I had hoped for. I still have knee pain - still severe at times, especially in the evenings - and my CFS symptoms are still worse than they were before Lyme.
One thing I've learned is that Lyme and CFS are even more similar than I previously thought. My new Lyme friend explained to me that Lyme often causes viral re-activation - just like CFS! Because of this, many Lyme patients take anti-virals, like Valtrex or Famvir, in addition to antibiotics. In fact, after my first two weeks on abx, I felt worse than ever. When I learned about Lyme causing viral activation, I filled a prescription I had been holding for Famvir (my Infectious Disease doctor suggested I try it after I finished my 18 months of Valtrex on August 1). Voila! I felt much better within hours of starting the anti-viral.
I thought that joint pain was an early symptom of Lyme disease, but I've recently learned it's actually a symptom of Stage 2 or 3 Lyme disease. Here's the NIH summary of Primary Lyme Disease, Stage 2, and Stage 3. The odd thing is that knee pain was my first symptom. Normally, a person with Lyme first experiences flu-like symptoms. It's easy to see how this could be confused with the flu-like symptoms of CFS, but I actually felt great in the weeks before my knee pain started. I can only guess that my CFS-messed up immune system made me respond differently and obscured those typical early signs of Lyme.
In fact, it can be extremely difficult to differentiate between CFS and Lyme, which is why many people are misdiagnosed. To make matters even more confusing, it is not only possible but fairly common to have BOTH Lyme and CFS since Lyme is a known trigger for CFS. I've learned I'm no expert, but here are a few things that can help to distinguish between Lyme and CFS:
- CFS often (but not always) occurs in a unique relapsing-remitting pattern, where you feel good on some days but even mild exertion can trigger a crash.
- CFS often includes a recurring sore throat and/or swollen glands
- CFS is partly defined by exercise intolerance
- Lyme will not get better without treatment - it will get progressively worse
- Lyme responds to antibiotics
- Although joint pain is one of many symptoms that can be a part of CFS, if joint pain is one of the most prominent symptoms, Lyme should be considered.
So, to address some of the questions I've been getting lately, here are some resources for those who want to learn more about Lyme, thanks to my friendly Lyme expert:
- Because the region where I live has a very high incidence of Lyme, a local Lyme Association offers lots of great information, including a General Information booklet that can be downloaded at this page.
- The International Lyme and Associated Diseases Society website offers information and resources on Lyme and other tick-borne infections.
- Dr. Holtorf in California treats CFS and has several articles available on his website about Lyme.
- A recent newspaper article about the difficulty of diagnosing Lyme
- An article on the rising rates of Lyme on Nantucket
Resting and waiting...something I should be used to, right?
The Power of the Blog
Just heard an amazing story on the news this morning about a mom's blog and how her readers are helping and supporting her and her family after a terrible accident. The plane crash they were in sounds awful, but the support from her readers all over the world is truly uplifting.
I needed to hear an uplifting story like that. I've had a bad couple of days - can't wait for my doctor's appointment this morning.
I needed to hear an uplifting story like that. I've had a bad couple of days - can't wait for my doctor's appointment this morning.
Monday, September 08, 2008
National Invisible Chronic Illness Awareness Week
This week is National Invisible Chronic Illness Awareness Week. The official website for the awareness week has lots of good articles on coping with illness yourself and helping others.
You can also celebrate this week by helping to educate our leaders about CFS. The CFIDS Grassroots Action Center has 5 action items available this week. Each takes only moments for you to send to your own government representatives.
As for me, I'm still battling symptoms of Lyme disease as well as CFS. I'll post again tomorrow with more details about how I'm doing. I have a Lyme check-up with my doctor tomorrow morning, after being on antibiotics for 1 month.