For the last few days, we have been without power courtesy of Hurricane Irene. At first, we focused on the basics – light and food – thankfully it was August and not a cold January. Once we had adjusted to the necessary and realized that it would be many days before the power was restored, we started to piece together a bare bones existence. It was quickly clear to me that my lack of internet access had shut down most of my work. So I sought out public wifi places only to find them crowded with others in the same situation. The servers at my library were periodically paralyzed under the load.
The internet has become a world where many of us live a good part of each day. I was thinking back on when I was sick and feeling so isolated in my home at a time when the internet and its networks were in their infancy. For those who are sick now, the internet is a lifeline of information, organizations and people – there to support and assist on the long road back to health.
And yet, I talk to many patients who don’t participate in online opportunities to share ideas, strategies, etc. Yes, some of the websites are more focused on venting frustrations or well meaning empathy. And that can be just what a patient needs some days. But a steady stream of it is not helpful. So you visit a few times and then lose interest. And then you self impose isolation.
I’m hopeful that this website, now in its infancy, will be a place for active participation and the sharing of approaches to this cruel disease. A way to take positive advantage of the access you have to other patients, caregivers, providers and graduates of the disease. We all have wisdom – hard earned. What have you learned about dealing with ME/CFS? What can you share? Please COMMENT or send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
The internet has become a world where many of us live a good part of each day. I was thinking back on when I was sick and feeling so isolated in my home at a time when the internet and its networks were in their infancy. For those who are sick now, the internet is a lifeline of information, organizations and people – there to support and assist on the long road back to health.
And yet, I talk to many patients who don’t participate in online opportunities to share ideas, strategies, etc. Yes, some of the websites are more focused on venting frustrations or well meaning empathy. And that can be just what a patient needs some days. But a steady stream of it is not helpful. So you visit a few times and then lose interest. And then you self impose isolation.
I’m hopeful that this website, now in its infancy, will be a place for active participation and the sharing of approaches to this cruel disease. A way to take positive advantage of the access you have to other patients, caregivers, providers and graduates of the disease. We all have wisdom – hard earned. What have you learned about dealing with ME/CFS? What can you share? Please COMMENT or send in your thoughts and I’ll post them. You can use the Contact Form or send an email to Martha at DefeatCFS dot net.
Look for a weekly posting on Tuesdays. And consider being part of the conversation.
Be Well Again,
Martha
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