Monday, November 26, 2007

CFS and Family

We're back home after a very successful 5-day trip back home to Rochester for Thanksgiving. We have a lot of extended family there, plus many of my old friends, so our visits are usually hectic and packed full. This trip was no exception, but I fared much better than usual. Of course, I had to be careful of what I ate, how much time I spent on my feet, and I stuck to my afternoon nap routine...but I made it through the whole trip without a single day of feeling bad and actually enjoyed myself! Our boys were very active, running around with their cousins all weekend, but they, too, made it through without crashing.

This was our third trip to Rochester (a 7-8 hour drive) in the past month. We went in mid-October to visit my grandfather in the hospital. He died while we were there, and we returned a few days later for the funeral. So, it's been a very challenging and tiring time for all of us.

I was pleasantly surprised, though, to find that some of my family members have finally begun to accept my illness. Although a few family members have been supportive right from the start, many of my family have responded for the past five years by just pretending that nothing was wrong. This has been deeply hurtful - to discover that the people I love the most weren't there for me when I needed them most. It has also made it difficult for me to spend time with my family because they wouldn't acknowledge my limitations or the changes I've had to make in my life.

All of this came to a head on a family vacation several years ago when I went into the worst crash I've ever had and found that no one would help me. They all just acted like everything was OK, even when I collapsed on the floor at one point. Though I was very hurt, I eventually came to realize that they were acting out of a deep sense of denial. My family does love me. It's just that some of them love me so much that they could not accept that I was now so debilitated. Perhaps the common misunderstandings of CFS played a role as well. This was a very difficult realization for me because my own attitude has always been to face things head on, learn as much as possible, and deal with everything in an upfront way.

So, after these many difficult years, I was pleasantly surprised to find some amazing changes during my recent visit to see my grandfather in the hospital. My uncle - one of those who previously pretended nothing was wrong - kept checking to see if I was OK, encouraging me to rest, and offering to help out so I wouldn't overdo. This meant so much to me. It's likely that my mother had something to do with this, since she also experienced a big turn-around in attitude in the past year, but whatever the reason, I was relieved to be able to just relax and be myself again.

I still have a couple of family members who rarely acknowledge my illness and tend to make light of its effects, but they're now the exceptions. A few years ago, I was at the point where I dreaded any family gatherings. I'm happy to say that I am now able to look forward to seeing my family again, and I truly enjoyed this hectic holiday weekend.

Thursday, November 15, 2007


Whew, it's been a long dry spell for my blog. I've been sick for the past week and a half. I guess I picked up whatever my oldest son had Halloween week. I was badly crashed for about a week. My crashes lately only last a day or two, so this one seemed to be triggered by a virus - that always knocks me out.

I felt much better on Sunday, then much worse again by Monday afternoon. That usually means a bacterial infection, and, sure enough, my doctor said I had bronchitis and started me on antibiotics. She said there's been a really nasty form of bronchitis going around lately, so she was worried about me. Fortunately, though, the antibiotics seem to be doing the trick.

I was well enough by today to even go on a much-delayed shopping trip to Target and Trader Joe's with my friend. She and I were both thrilled that I was able to manage it! Everyone needs a friend like her. When I was unable to go along to dinner and our book group earlier this week, she told me it wouldn't be the same without me. I was pretty bummed to miss my book group and appreciated her kind thoughts.

So, I'm glad to be back to my own kind of normal. It was so frustrating to be unable to do anything at all for days at a time. And now the holiday season is approaching fast!

Friday, November 02, 2007

Happy Halloween!

We've had an exhausting, whirlwind of unexpected activity these past two weeks, due to some family emergencies (more on that another time). Jamie had bronchitis earlier this week, but, by some miracle, we were all well enough to enjoy Halloween on Wednesday. It's one of our favorite days all year!

As is our tradition, we all dressed up - why should the kids have all the fun? This year, our younger son, Craig, wanted to be Elvis. He's a big Elvis fan and insisted we visit Graceland this summer when we went through Memphis. Craig wanted to be the younger Elvis, in the black leather outfit he wore for his comeback concert after his stint in the army. So, my husband, Ken, decided to be the older, Vegas-style Elvis. Here's big and little Elvis posing together before trick-or-treating. I dressed up as an Elvis fan from the 50's. Jamie and his friend decided to go as old-time Arabian knights (we watched Lawrence of Arabia recently!).

I was worried about Jamie, but he handled the evening well. Both boys even made it to school the next day. I went along trick-or-treating for the entire neighborhood with Ken and the boys for the first time in many years...and paid for it the next day. I felt like I had run a marathon, with sore muscles and plenty of aches and exhaustion. I bounced back quickly, though, and felt very good today. Amazing! I think that's one of the effects of the Valtrex treatment. I still crash, but my crashes tend to be much shorter lately.

I hope everyone else enjoyed Halloween as much as we did!