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.


Jojo said...


I have not been formally diagnosed with CFS but the symptoms are there and I have tested positive for EBV antibodies that indicate a current or recent infection. I have been doing everything I can to rest, eat well, and all the other things other than taking heavy duty drugs to combat this. One thing I have done recently is to sit in a sauna (15-20 minutes in, cool off for 15 minute, then another 15 or 20 minute back in the heat) and the following days I have approached normal and found myself in a very good mood. I have only done this three times so the positive feelings could be coincidence rather than a direct effect of the sauna.

My thinking behind this came from the realization that typically a viral infection will cause a fever. This is the body's way of trying to kill the virus. My body temperature has alway run a little low and continues to do so. I thought I might try to create my own fever with heat, thus the sauna. After feeling positive for the first time in months I did some research on the benefits of sauna. It seems to provide many of the benefits of exercise like increased circulation, detoxification through sweating, and an increase in endorphins associated with exercise. Being out of energy and feeling completely depleted through real exercise, the sauna seems like a great way to get many (not all) of the benefits of exercise without spending the precious energy that I do have. I then learned the theory behind the cold plunge after taking in the heat of the sauna. First, as the body is heated the circulatory system tries to keep the body cool by sending all the blood to the outside of the body in order to release heat. Blood going to the core of the body (all the organs) is reduced. The body sweats and eliminates toxins. After 15 or twenty minutes of being in the heat you then reverse the process by plunging into a pool or very cold shower. The body restricts blood flow to the outside of the body and sends all the blood it can to the core in order to keep the organs warm. The organs are now flooded with clean blood and can further deliver the nutrients and remove the toxins associated with the internal organs. You don't need to stay in the cold nearly as long as you do the heat. Less than a minute (it will seem like an eternity). Then it's back in the heat for another 15 or 20 minutes.

OK, like I said I have only done this a couple of times but I have enough encouragement by the positive "results" I have experienced to go get a gym membership so I can do this every day and see if this works. What I would also like to do is conduct our (people with EBV or other viral infections) own experiment to see if this could be of real benefit. At first I thought everyone should be on the same page with meds, diet and all that, but it occurred to me that if everyone in this "experiment" had completely different regimens, equal only in the fact that nothing was working, then the new variable of the sauna would best be tested.

From here, how can we compile a group of a hundred or so people who can commit to a very specific regimen of this practice for a month or two and compare notes?

Any feedback yo may have about this will be greatly appreciated.



Sherry said...

Hi Sue,
Just wondering how you and your family are doing, since you haven't posted for awhile.