© 2011 TSM
I recently received two diametrically opposed e-mails on the same day. Both were written from the heart and came from caring, passionate people who have been dealing with ME/CFS for way too long.
The first was from a patient who has been sick for decades. Yes, decades. I can’t even imagine where or how I would be after dealing with ME/CFS that long… She related her steadfast struggle to regain her health trying every promising treatment from the reasonable to the absurd. At this point, she is managing to live a somewhat productive but restricted life with push/crash cycles and wrote to express her objection to my viewpoint that “you don’t have to live with it”. Personally, she has never met anyone who has recovered and feels that it is cruel of me to mislead patients into thinking that they can recover. I heard her frustration.
The second was from a former patient who was inspired by my book. Yes, former. Like me she had been sick for about four years and like the first patient above, also had worked steadfastly to regain her health and recover from ME/CFS. Now healthy, she was feeling the desire to “give back” to the CFS community and talk about her recovery. But she was disheartened by the number of ‘lifer’ blogs and forums on the internet where patients were insistent about the incurable nature of ME/CFS and found the negativity to be a turnoff. I heard her frustration too.
Both of these viewpoints, and all the perspectives in between, need to be expressed and heard. I’m hopeful that we can be part of that conversation and in the process contribute to some positive outcomes. What’s your take on recovery from ME/CFS? 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
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
© 2011 TSM
I have held the intention to start this CFS (or fill in your preferred name) conversation for a while. But life has been full of growth, transitions and holding patterns for many of my loved ones so I have been fully present for them. And consequently, not so present for myself.
With the departure this coming Fall of my youngest off to college, I am feeling some of the usual sadness of the so called “empty nester” but honestly, not so much. I am celebrating the culmination of this phase of my parenting and I am so proud of both of my kids and the mature young adults they have become. They have much potential and a solid foundation upon which to build their futures. I am most proud of the caring people they have become and their capacity to be part of the solution.
I appreciate the way some things seem to come around full circle. The child born from the nightmare CFS pregnancy so many years ago is my youngest whose departure now provides the time and the energy on a daily basis to return to the CFS community. Somehow that seems fitting.
Most importantly, and mercifully for the readers, this blog is not intended to be about me. Although I am a writer and am quite capable of generating a stream of endless self-centered babble, my hope is that this space will house a conversation about CFS and its many aspects which affect our health and our lives.
There is much hard earned wisdom in our community and we should share it. No one has the market on THE secret to defeating CFS. It is at best a shadowy disease (more about that in my next blog) and a lot of what we actually know about it comes from those who have had it or those who are still struggling with it. We also are fortunate enough to have many health care providers, family and friends who know us well and who recognize that CFS is a real physical disease. They have wisdom to share as well.
So please consider becoming a part of the conversation by commenting, asking questions, suggesting topics or guest blogging. Think about joining the community by sending a short thumbnail about your CFS story with a bit of your acquired wisdom and attach a pic of yourself or an image which appeals to you. 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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