ME/CFS, Personal

ME/CFS Awareness Day 2018

I am incredibly worn out (which is a thing that is likely to happen when you suffer from ME/CFS) but I didn’t want to let the awareness day pass without a mention from me.

Here are the things I would like people to be aware of:

  • Doctors and researchers: that the disease is real, its symptoms, and that there is a crying need for treatment and research.
  • Your average person on the street: that the letters ME/CFS mean that someone is really sick. After all, I don’t think any given person knows that much about AIDS, or MS, or ALS, but when people hear those letters they know that someone is really sick. And that’s all I want people to know: that it’s real and it’s serious.

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    In case you are wondering what is up with the pair of empty shoes, they are the visual symbol of ME/CFS Awareness day. Pictures and displays of empty shoes represent all of the people missing from society because of this disease. This is one of my favourite pairs of shoes.
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ME/CFS, Personal

ME/CFS: coping by prioritizing

What I want to do: write a thoughtful post about ME/CFS. One that makes fellow sufferers say, “Yes, that’s exactly how it is! You’ve captured my feelings exactly”. One that helps people without ME/CFS understand what we go through.

What I am currently capable of doing: . . . not the above.

So, instead of that post, you’re going to get a post that requires less of me.¬†What I’m doing right now: watching the Brother Cadfael mystery series (set in England during the 12th century). And noodling around on the internet. Yeah, doing two things at once is a good recipe for not really enjoying either one of them, but the impulse is difficult for me to resist. ME/CFS makes me restless and then robs me of the ability to concentrate or perform sustained physical activity. Whatcha gonna do.

Recently, in an effort to cut down on feelings of despair that accompany the inactivity enforced by my illness, I have taken to making a mental checklist on bad days: what are the one or two things I really need to do today? If I can decide what those are, I kill two birds with one stone: I am less likely waste my energy on nonessentials and waffling about what to do, and I feel less guilty for all the things I didn’t do. Somewhat ironically, setting my priorities often allows me to do more than just the basics.

It’s true that sometimes I don’t manage even the most basic things I wanted from a day, but I’m learning how to move on from it. To forgive myself, and extend myself the same understanding I would give to someone else. I do have bad days (weeks, months), but I like to think I do what I can. And that’s all I can ask of myself.

ME/CFS, Personal

Severe ME/CFS Awareness Day

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.

ME/CFS, Personal

ME/CFS TED Talk

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:

  1. 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.
  2. For governments and research organizations to allocate funding for research, which we so desperately need.
  3. 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.
ME/CFS, Personal

#MillionsMissing: ME/CFS Protest!

Today is the day: an international protest/awareness event for ME/CFS! Because I cannot attend in person, I am doing what I can with the platform available to me: the Internet.

The empty shoes symbolize the people missing from society because of ME/CFS. Many people in my family suffer from this disease, and I asked them to contribute their photos to help us raise awareness.

If you would like to help spread awareness, there are suggestions in that link. Also, feel free to like or reblog this post, or put it on facebook. You can sign this petition for increased funding for research. I think we need to reach some sort of critical mass in public consciousness before we will get the funding we so desperately need.

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My shoes
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My sister Isabella’s rainboots
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My sister Jane’s sandals
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My sister Lizzy’s shoes
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My mother’s photo and her message: “ME/CFS affects everybody in the family.”
ME/CFS, Personal

ME/CFS Awareness Day

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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.

Christmas, Holidays, ME/CFS

Holiday Hiatus

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Our little Christmas tree, complete with angelic Troll doll ornament.

I apologize for my lack of posts lately. I have my reasons, of course. I’ve been busy with holiday things, and I had a setback with my health from which I am still recovering. Also, some of my projects are a surprise, so I can’t post about them until after Christmas. I promise to update and show what I’ve been working on, but I can’t guarantee anything before the new year. I wish everyone a merry Christmas, happy holidays, and a wonderful new year.

 

ME/CFS

Sometimes

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.

Boo. Hiss.

*ahem*

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.

ME/CFS, Personal

What goes around comes around

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.