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.
I had many goals for 2016, and I achieved a pleasing number of them, but my most resounding success may have been my reading goal: I set out to read 100 books I had never read before during the course of this year, and as of today I have read 102.
I read novels, biographies, plays, poetry, and comics. I read fantasies, mysteries, romances, histories, and a few children’s books. I read ancient classics and books published last year. Some of my favorites were Ivanhoe (knights!) by Sir Walter Scott, and Tooth and Claw (dragons!), by Jo Walton. I read books in every format: paperback, hardback, on my Kindle, on my phone. I listened to many audiobooks, some read by volunteers and others by professionals.
2016 was a good year for me in some ways, but I’m not sorry to move forward into 2017, where many more good reads await me, I’m sure. Happy New Year, everyone!
It is late October, almost time to set out a jack-o’-lantern and welcome Spiderman and Queen Elsa to help themselves to one’s candy. The leaves on the maple tree which shades our western window have all fallen*, or more likely, been forcibly parted from it by the wind.
The sky is overcast, but it doesn’t feel gloomy to me. For some reason, I am almost happy this morning, easily able to feel the good in the season and in the world. Forgive the possible descent into pomposity, but I’ve been thinking about happiness (there, I warned you. Proceed at your own risk). Happiness is often spoken of as if it existed outside ourselves, and most of us just can’t remember where we set it down last; perhaps we left it in the car? But when we go to check, it isn’t there.
But perhaps instead of thinking of happiness as being lost, or even found, we should think of it as being made. This idea is both frightening and exhilarating. Frightening, because that implies it’s something we have to do for ourselves, possibly involving hard work and even pain. And for some of us, there is a deep, abiding fear that there is not, cannot be, happiness inside, so it must be outside, if it exists at all.
The exhilaration comes from feeling happiness to be within the scope of our efforts, no longer to be denied us because of our life’s circumstances or our personalities. When one stops thinking of emotion as being contingent on external circumstances, a new world opens up–not an endlessly blissful landscape, but still one which we have a part in shaping, in whatever way we decide. I’m far from being a Stoic, but I do like this quote from Marcus Aurelius**:
If you are pained by external things, it is not they that disturb you, but your own judgment of them. And it is in your power to wipe out that judgment now.
I feel there is much truth in this. So I encourage you to make your own happiness. You can do it.
* Hence the seasonal name, fall. This has fallen out of use in British English, but remains current, alongside the more formal “autumn”, in American English.
** A Roman emperor who wrote a whole book on Stoicism.