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.
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.
I have hardly blogged at all this year, and I would like to change that. I recently found posts from my old blog*, which I thought was lost and gone forever, à la Clementine. Reading over them made me realize how much my writing style has changed. My personality shone through much more clearly in my old posts, and I wrote to please myself rather than an audience. My posts rarely had images, and my subject matter was varied. I simply wrote about whatever I was interested in saying at the moment, with no theme.
I do really enjoy getting views and followers, and seeing people from around the world come to my blog is quite exciting, especially as, due to my illness, I spend much of my time at home and my interaction with the outside world is rather limited. But I think, in gearing this blog toward followers, I may have lost something important: whimsy and self-expression. I don’t like revealing much about myself online, and that has had an impact on what I am willing to write. But maybe the time has come to say more and worry less. If people aren’t interested in a particular post, they can just skip it! But it won’t just be musings. I have long intended putting up posts about projects beyond baking, such as my knitting and embroidery. Maybe, maybe, I will at some point have regularly scheduled posts. No promises, though.
*via the Wayback machine, which is an attempt to create an archive of the internet.
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 20172016 (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.
(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.
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.
Both my husband and I love houseplants. Which is why our apartment currently has close to 50 plants in it. (Greenery overload! Some of them are refugees from my husband’s office and need to be re-homed.)
A few years ago, we went to a bonsai show. We wanted to get one for ourselves, but didn’t really feel justified in the expense at the time. Then, last year on our wedding anniversary, my gift to my husband was a juniper bonsai, which currently lives in our kitchen on top of our microwave (why yes, we are running out of flat surfaces on which to put our plants!).
Unfortunately, when it arrived it was infested with fungus gnats, which were killing its root system. After a couple of treatments* the gnats died and the plant is recovering.
Then, last week, there was a further development in our bonsai saga: my mom gave us a kit to grow our own little trees from seed! Very exciting. And it’s just the right time of year to plant things.
The first step was soaking the seeks for 24 hours. The seeds for the flowering trees changed the color of the water, but the evergreen seeds didn’t. After they had soaked the requisite amount of time, we prepared the peat for potting. This involved pouring very hot water over the little discs of dirt and watching them expand to many times their original size.
After the dirt was rehydrated, it looked and felt like half-cooked brownie batter. In order to prevent mold, the instructions bade us squeeze the water out, which also helped to cool it down. That bit was pretty fun–there’s something very satisfying about sticking one’s hands in dirt and mucking about.
Then it was time to plant the seeds. Unfortunately, we only had one seed for picea abies, the Norway spruce, so I’m really hoping it sprouts. In clockwise order from the top left, the seeds are picea abies, the Norway spruce, delonix regia, the flame tree, pinus aristata, the Rocky Mountain bristlecone pine, and jacaranda mimosifolia, the jacaranda (I’m very excited about this one! Such beautiful purple-blue flowers). The close up is of the flame tree seeds, whose outer layer peeled off like old plastic.
At the bottom, you can see how much the peat disc expanded, and the last picture labels all the seeds and gives the date on which they were planted. The instruction booklet said that the Norway spruce can live for thousands of years, so . . . perhaps we will have to make arrangements for it in our will. Is there some sort of institution that cares for bonsai that outlive their owners?
They will not be sprouting for a least a few weeks, but when they do start, I will be posting updates about their progress. I’m very excited to see how they grow!
*A triple attack of hydrogen peroxide and diatomaceous earth (to kill the grubs, which do the actual damage) and cinnamon (to prevent the adult from coming back to lay more eggs). To paraphrase Mr. Darcy, fungus gnats “are my abhorrence”.
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.
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.