I know I have already posted lots of links to articles and interviews with Laura Hillenbrand, author of Seabiscuit and her new book, Unbroken. Maybe you're getting sick of reading about her, but this new Washington Post article is just too good not to pass along. It focuses heavily on her life with ME/CFS, describing in detail what her daily life entails and the restrictions she lives with. It is very well-written and brought tears to my eyes.
Hurray for Laura Hillenbrand! Not just for writing two incredible best-selling books but also for being honest about her illness and challenges and helping to bring CFS out of the closet and into the public eye. She is an inspiration.
Thanks to Dominique for sending me this link!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
What a fantastic article, Sue. Thanks for sharing! I immediately posted it to facebook & twitter as it accurately depicts what it's truly like .. something that's hard for people to get :)
ReplyDeleteI also have CFIDS for 19 years. One of my main problems that I sleep 12 to 14 hours minimum a day and am not refreshed at all. If I push myself for something really special, I can sleep straight through except for the bathroom for up to 36 hours. My doctor prescribed dextroamphetamine (Ritalin) to give me a touch more energy. I do not notice a difference after all these years but my doctor said I would if I went off it. ANY IDEAS OUT THERE FOR OTHER MEDICATION TO HELP?
ReplyDeleteHi -
DeleteThanks for leaving a comment. There are treatments to correct sleep dysfunction so that your sleep is deep and refreshing and feels normal, plus LOTS of other treatments that can help with ME/CFS. Here are some ideas to get you started.
Here are the things that have helped me and my sons the most:
Treating Sleep Dysfunction:
http://livewithcfs.blogspot.com/2009/09/treating-cfs-sleep-dysfunction.html
Treating Orthostatic Intolerance (OI):
http://livewithcfs.blogspot.com/2010/02/orthostatic-intolerance-and-cfs.html
Beta Blockers for OI:
http://livewithcfs.blogspot.com/2012/11/switching-to-long-acting-beta-blockers.html
Low-Dose Naltrexone:
http://livewithcfs.blogspot.com/2014/08/low-dose-naltrexone-update-and-dosing.html
And Imunovir/inosine:
http://livewithcfs.blogspot.com/2014/04/imunovir-update-and-inosine.html
The other thing to consider is whether you have underlying infections that need to be treated. In most cases where people with ME/CFS get worse and are housebound, there are some infections behind it. CFS causes viral reactivation of latent viruses, so most people with CFS can benefit from targeted antiviral treatment. Another common culprit is Lyme disease and the co-infections that go with it. So, you should consider seeing a ME/CFS specialist doctor and a Lyme specialist who can run a bunch of tests for various infections.
Hope that helps!
Sue