Awareness, Guest post, ME/CFS

Guest Post: ME/CFS in Metaphor

Hey readers, this is a guest post from my sister-in-law, who also suffers from ME/CFS.

Let me compare CFS/ME to trying to live life with high roller friends while operating on a minimum wage salary. There’s some justice in this comparison. Think of it like this: all your friends and family are loaded with money—so much they take it for granted, and spend it freely. They don’t even think about it. Spending money is like breathing in and out. The most natural thing in the world. Cars. Jets. Charities. Vacations. This is their life. It’s what they are used to and they’ve never known anything different.

Your friends love you and want you to be with them. Of course, you want the same, but you’ve got thirteen bucks to your name and that won’t go very far on a high roller lifestyle. You have to stretch those coins out very carefully, and often creatively, just to get the bare minimum done with them. And they hardly cover the most basic needs, much less luxuries.

You explain your situation. And they understand, or… they try to understand. They offer to pay your way. They’ll cover the travel. They’ll cover the cost of the meal. But even then, you’ve got to wear something. And that dress and shoes are going to cost you. But you want to be with your friends and family, so you go into debt. And you go out and you smile and you take those pictures, and you clink your glass in that toast, but the cost of the dress and shoes is in the back of your mind all the time. You’ll have to pay for it.

And you do. Several days, or weeks, later you surface again and you see your friends and they invite you to a gala, but you’re still half shattered from the last experience. You shouldn’t go out again so soon. So you decline, and they try to understand, but they go away hurt anyway. You go away, lonelier than you can remember having ever been.

Invitations come less frequently, but you can’t give too much thought to it, because the bills are coming in and you can barely keep your nose above them. And you have to parse out that money so carefully, just to do the most basic things. Keep your child and husband fed. Clothed. Safe. Manage your work as best you can, pinching pennies and cutting back, going hungry yourself half of the time because you need the money more than the flesh on your bones.

It’s stressful, because you want that connection to the outside world, but you simply can’t afford it. There’s guilt as well as stress, and a gnawing hunger for an existence not quite so suffocating—not quite so narrow, but again, the stress only makes things worse. It comes calling in the persona of creditor. And if you believe in it too much, suddenly even the breath in your nose costs you and you know that you’ll never see your way out of debt—even the brief reprieves are only temporary.

Occasionally—only occasionally–you wonder what ever happened to your dreams. You look at yourself in the mirror and you see a husk of your former self, and still you guard that self and all it represents, because you must. You have debts to pay with it.

And your friends and family make excuses for you, but some few of them (in an ungenerous moment) wish you would try harder to be in the land of the living. Your child feels resentful and deprived. And she is right. She wants you and can’t have you. You are already quartered and sectioned off to the creditors.

The thing about CFS is it’s not money, but it’s energy you haven’t got. And healthy people have energy in spades. They take it for granted and can’t understand what it is to have such profound weakness and relentless pain without any explanation. Can it possibly be real?

Let me answer that question.

Yes, chronic fatigue is real and its victims are many. Our disappearance is not for lack of effort. Not for lack of determination. Nor for lack of heart or nerve. We slave invisibly under debts you cannot imagine. And you—you who have your health. You are the one percent to us. So extraordinarily, so unattainably rich. Do you know how wealthy you are?

We wouldn’t wish you any less. Take your abundance and do well with it. We simply wish you knew your wealth.

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humour, ME/CFS, Personal

Fear of Missing Out

To achieve the twin goals of expressing myself and showing people what life is like with ME/CFS, I’m going to start doing short posts with gifs, to add humor and a visual element.

Fear of Missing Out: we bypass FOMO and head straight to COMO (Certainty of Missing Out). It’s hard to get up to much when you’re very ill. There have been so many things, even quite small things, that I haven’t done because I just wasn’t well enough.

A small illustration: the vast majority of the time, I do not have the energy to drive myself somewhere, do whatever it is that needs doing, and drive back. Earlier this year I drove a few minutes to the pharmacy, picked up my medications, and came back. All by myself! And yes, that was a first, and a major triumph. I am somehow still surprised when people think I might show up somewhere without my husband (“Oh, is he with you?”). If he ain’t there, I ain’t either. He’s my ride.

Miranda a night out
Miranda captures the essence of a big night out

Another example: we have lived in our current apartment for more than three and a half years, and there is a weekly knitting night at our local library that I have always wanted to attend. How many times have I been able to go? Zero. Sad but true.

But things are better than they used to be. There was a point in my life where I didn’t so much as set foot outside for days at a time, and it is now rare that I don’t make it at least to the mailbox. Progress, inchworm style.

Inchworm
We can do it!
Awareness, ME/CFS, Personal

ME/CFS Protest of Dr. Per Fink

Thanks to Jennie Spotila, who writes at Occupy M.E., I recently became aware of something important to the community of ME/CFS patients and researchers. A doctor named Per Fink is slated to give a presentation at Columbia University about ME/CFS and fibromyalgia. Why is that bad? To quote from Jennie’s post:

Fink is well-known to the ME community because of his involvement in the case of Karina Hansen. In 2013, Hansen was 24 years old when she was forcibly removed from her home and involuntarily committed to Hammel Neurocenter as a psychiatric patient, despite her ME diagnosis. Fink was one of two doctors overseeing her “treatment” at the institution, and permitted almost no family contact for more than one year. After years-long legal battles, Hansen was allowed to return home in 2017 2016 (as documented in Unrest), and her state guardianship was only terminated this week. Given the deterioration in Hansen’s condition while under Fink’s care, one has to wonder how his other “bodily distress syndrome” patients fare.

I am equal parts saddened, disgusted, and enraged. And there’s some fear in there as well. I don’t know what people like him get out of spreading misinformation like this. Does it stroke his ego? Does he just . . . ignore the evidence that tells him he is wrong? I just don’t know. I do know that this is very wrong. He should not be given a platform at such a high profile university to spread harmful misinformation which contradicts scientific study and hinders progress toward understanding and treatment of this illness. If you haven’t already clicked the link, please read Jennie Spotila’s post, which has links to actions you can take.

Awareness, ME/CFS, Personal

ME/CFS News and Petition

A brief summing up of what’s going on:

(T)he CDC (Center for Disease Control) intends to issue a sole-source contract with the Pacific Northwest Evidence-based Practice Center (EPC) to expedite the development of federal evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME).

Basically, they’re hiring these people to write up guidelines for treatment. So what’s the problem?

The EPC previously conducted a systematic evidence review in 2014, but failed to account for the use of the Oxford definition and other overly broad diagnostic criteria used in many studies and which do not require a hallmark symptom of this disease—post-exertional malaise (PEM). This led to the erroneous conclusion that GET (graded exercise therapy) and CBT (cognitive behavioral therapy) were effective treatments for people with ME.

I don’t want doctors who know little or nothing about ME/CFS to recommend these treatments to patients. Exercise can have devastating effects on us, and we have to be incredibly careful. I would hate for anyone to get even more sick just because they were trying to follow their doctor’s instructions.

As for CBT, it has its uses, but here’s the thing: ME/CFS isn’t a mental illness. You can’t, you CANNOT, train yourself out of it.

My sister Isabella, a fellow ME/CFS patient, shared this email with me, and since I don’t use Facebook or Twitter, the best way for me to reach out is with my blog. Please sign and share it. They are requesting signatures regardless of country/location. What negatively affects the ME/CFS community in one part of the world is bad for all of us.

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.
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.