CFS In the Local News!

Last night, I was flipping through our little town weekly newspaper. I got to the editorial page and was surprised to see the headline"CFS Misunderstood, Debilitating Disease" at the top of a long letter to the editor.

"Hey, this is great! Our newspaper printed something about CFIDS!" I said to my husband. Then I moved my eyes down the column and saw my own name at the end of it! I was completely perplexed because I hadn't written a letter to the paper, and I didn't even remember writing these particular words (that's brain fog, for you). Then, I realized it was one of the letters I'd sent through the CFIDS Association's Action Center earlier this week. That's why I didn't recognize the writing - the Association wrote most of it, except for the two paragraphs I added about how CFIDS affects us.

I was so excited that they printed the letter, in its entirety! It took up a third of the page and was set off in an outlined box. Isn't that cool? Plus, it was nice to learn I'm not completely losing my mind and forgetting what I wrote!

It's not too late - you can do the same. Using the action center only takes a few minutes, and it works. Maybe your local paper will print a letter, too.

Real Strength

On Sunday night, after I'd spent the weekend resting, my husband said:

"You know what most people don't get about CFIDS? That the hardest part is not doing all the stuff that you really want to do because you know it'll make you feel worse later. That requires real strength."

He's right. In our society, strength is seen as pushing on through adversity, continuing to move and do and strive no matter how you feel. In CFIDS, that's counter-productive; the harder you push, the sicker you get. But many people see this kind of proactive rest as weak or lazy. This is one of the hardest and most misunderstood aspects of CFIDS.

And aren't I lucky to have such an understanding husband who truly gets it? Yeah, I am.

Happy Mother's Day!

Happy Mother's Day to all of the wonderful mothers out there who work hard to take care of their families in spite of living with CFS and to all of the moms taking care of sick kids or other sick family members. You all deserve a day of rest and celebration!

That's my Mom, my two sons, and me (with my niece) at my niece and nephew's birthday last year. It's one of the few photos of me with my mom, since I'm always the one taking the pictures! My mom and her husband will be visiting next weekend.

I'm still severely crashed, though my sore throat is a little better. My wonderful family helped make breakfast this morning, gave me piles of wonderful and thoughtful gifts and cards, and is planning a surprise dinner for me tonight. I wish I could get outside and take a hike with them, but I'm content just to spend my mother's day resting, with my amazing husband and loving sons nearby to take care of me. I am hugely grateful that I cancelled our planned trip to Connecticut this weekend - I would have been in much worse shape traveling.

Happy Mother's Day!

Down Again

I finally got Craig back to school and back on his feet, and on Thursday I felt really good for the first time in two weeks. Then, last night, I kept waking up with my throat so sore it felt like I had swallowed barbed wire. I finally got up at 6 am to take some ibuprofen for the pain, but I couldn't even swallow water. I ate a spoonful of honey, took the pills, and went back to bed until 10 am (unheard of for me!)

I don't know where this one came from, but I feel achy all over and have this awful sore throat. This isn't my usual CFS sore throat (which I haven't had much anyway since starting naltrexone); my glands are swollen hugely. I guess it's another infectious trigger - my older son and best friend are both feeling poorly, too.

Well, nothing to do but rest and wait.

Keeping Things in Perspective

My 10-year old, Craig, has a nasty case of bronchitis; the doctor said it was on the verge of turning into pneumonia. He's been home sick from school for the past two days, feeling awful.

Yesterday, I caught myself starting to feel depressed. I saw my poor little guy lying on the couch like a limp rag, and I felt helpless. Plus, I felt sorry for myself since I was sick all last week, my older son was sick, and now I have another sick kid to take care of, so I haven't gotten any work done in awhile.

Then, I remembered all the other Moms of kids with CFIDS that I've heard from lately - many of those kids newly diagnosed (or not yet diagnosed) and so ill they can't go to school. All those kids, all over the world, who are too sick to get off the couch and all those parents who don't know what to do about this crazy illness. I also remembered when we were in that same place - day after day of watching our kids suffer and being unable to help.

I realized how very fortunate we are. We've found treatments that help our kids to live an almost-normal life. These crashes we've gone through lately have become unusual events.

This is part of the reason why I write this blog and why I try to answer all the e-mails I get from parents and from adults with CFS. We're all in this together, battling this mysterious disease that has the potential to take so much from our lives. Yes, it's a struggle every day to keep going in the face of such challenges, but I can't feel sorry for myself. I need to keep going for myself, for my kids, and for all the other millions of people out there who share these challenges with us.

Today, I used the CFIDS Association's Action Center to send letters to the media and government officials to support additional funding for CFIDS research. It only took 10 minutes, but hopefully, I'm helping to get the message across that this illness deserves more attention. The more letters that go out, the better chance we'll be heard, so go to the website now and send your own letters. One of the letters concerns a Congressional meeting on CFIDS this Thursday, so don't put it off. We have to keep fighting this illness however we can.

The Lost Week

I haven't written in my blog in awhile because I've been caught up in the usual rollercoaster of CFIDS. I had some good weeks, but my husband was away on business for almost two weeks, so I was quite busy just taking care of the kids and the house on my own and trying to get some work done.

Last week was one of those lost weeks of CFIDS. I was severely crashed for a full eight days, able to do nothing but move from the bed to the couch and back again. I have a huge backlog of e-mail that I'm ignoring this morning while I write in my blog!

For me, crashes that severe and that long-lasting are almost always triggered by some sort of virus. My older son was also crashed for a few days last week, though he was able to go back to school on Wednesday, so I suspected a viral trigger. Now, my younger son is very sick, with heavy congestion and a cough - perhaps this is the virus that's been causing all this trouble? Since Craig's CFIDS is much milder than mine or Jamie's, he tends to actually catch viruses, while we crash but don't get the viral symptoms. That's life with CFIDS, right?

So, I'm happy to report I'm doing better, although I stayed up too late last night trying to catch up on stuff I meant to do a week ago. Having lost a complete week, I'm feeling a bit overwhelmed today with the backlog of work, but having Craig home sick will help to keep me from overdoing. I won't be leaving the house anyway (something I was looking forward to!)

A new week, a new beginning.