August 8th is the awareness day for severe ME/CFS. At its worst, ME/CFS can mean being so sick and so sensitive to stimulation that you are in a dark room by yourself all day.
There is some good news, though. My sister Isabella sent me a link about progress that is being made on ME/CFS research at Stanford University. It may enable a diagnostic test, the lack of which has been a big obstacle to doctors in identifying patients with ME/CFS and giving them the care they need. It may even point the way toward new treatment! The basic gist of the news is that ME/CFS patients have a much greater amount of certain cytokines that are linked to causing inflammation than the healthy control subjects do.
As always, I am excited when ME/CFS is given publicity and researchers move forward. I’ll be keeping my eye Stanford’s ME/CFS site.
This is the first ever TED talk about Myalgic Encephalomyalitis/Chronic Fatigue Syndrome. I cried when I watched it. What Jennifer Brea has to say about her experience is so important. We need people to pay attention to us, and to believe us. Doctors don’t treat or study what they dismiss. If you have ME/CFS, please send a link to this video to anyone you know who is interested in understanding you and your illness.
Here are the things I want:
- For doctors and scientists to recognize this disease. To acknowledge that it is real and provide palliative care even if they can’t do anything else.
- For governments and research organizations to allocate funding for research, which we so desperately need.
- For ordinary people to hear “ME/CFS” and understand that someone who has it is very sick. I don’t need them to know what it stands for, or what the symptoms are. All I want them to know is that it is real and it is serious. That seems like a very low bar to me.
Today is, as you may have guessed, ME/CFS Awareness day. This disease has been known by many names over the years, but is currently known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS for short).
This is a devastating disease that affects many millions of people throughout the world, many of whom live alone and in poverty, because they are often too sick to support themselves and are not infrequently abandoned by friends and family.
Yet recognition has been slow and funding scarce, in defiance of good sense and of compassion (billions of dollars are lost to the US economy each year because of ME/CFS; researching a cure would be a sound investment!).
*I will update this post with more information on ME/CFS and what you can do to raise awareness when I can get to a computer. My phone is difficult to write on.
This first one is a metaphor I have made myself, and I was delighted to see someone had articulated it for me on the internet!
Here are two more, for your amusement:
I’m So Sorry
This is my life now.
Sometimes I feel really helpless. Of course, most people are helpless to some degree–no one has complete control over his or her own life. But being completely unable to rely on the reactions of one’s own body is a helplessness like no other.
Feeling awful is terrible (imagine that!) but not knowing why can make it even worse. Some people get understanding doctors and supportive family, and some don’t. To everyone with a chronic illness who doesn’t have a diagnosis: I’m sorry. I hope medical science advances rapidly and provides you with answers. And maybe also makes us all into cyborgs.
Even with a diagnosis, a sudden change from normalcy to constant sickness must be devastating. I’ve had CFS so long that I don’t remember what not having it is like, emotionally or physically, but it still devastates me sometimes. But who can you rail against? This thief of life can’t be reported.
But now that the internet is a thing, we can find each other. Someone understands. Someone cares. And that someone is me.
As winter approaches, here in the northern hemisphere, I find myself once again confronted with the problem of Very Cold Hands. Circulation: not just for newspapers.
This year, I was determined not to suffer through another season of cold and aching hands, my fingers stiff and my skin painfully dry.
But the thing about hands is, you need them for just about everything. You can’t just swaddle them in socks and slippers, like your feet. They’re going to have to come out at some point.
So, gloves were not quite what I was looking for. But maybe fingerless gloves . . . to the internet! To research. And I found a great solution: fingerless gloves that turn into mittens!
So far, I am very pleased with them. I can type in them, and use my phone. They are good for outside wear, but I can also wear them in bed (if I’m too cold, I can’t fall asleep. I tell my body this is nothing short of self-sabotage, but it doesn’t listen). Unfortunately, they aren’t available on Amazon–I got mine from Target.