Elana Hashman: I am very sick
I have not been able to walk since February 18, 2023.
When people ask me how I'm doing, this is the first thing that comes to mind.
"Well, you know, the usual, but also I still can't walk," I think to myself.
If I dream at night, I often see myself walking or running. In conversation, if
I talk about going somewhere, I'll imagine walking there. Even though it's been
over a year, I remember walking to the bus, riding to see my friends, going out
for brunch, cooking community dinners.
But these days, I can't manage going anywhere except by car, and I can't do the
driving, and I can't dis/assemble and load my chair. When I'm resting in bed
and follow a guided meditation, I might be asked to imagine walking up a
staircase, step by step. Sometimes, I do. Other times, I imagine taking a
little elevator in my chair, or wheeling up ramps.
I feel like there is little I can say that can express the extent of what
this illness has taken from me, but it's worth trying. To an able-bodied
person, seeing me in a power wheelchair is usually "enough." One of my
acquaintances cried when they last saw me in person. But frankly, I love my
wheelchair. I am not "wheelchair-bound" I am bed-bound, and the
wheelchair gets me out of bed. My chair hasn't taken anything from me.
***
In October of 2022, I was diagnosed with myalgic encephalomyelitis.
Scientists and doctors don't really know what myalgic encephalomyelitis (ME)
is. Diseases like it have been described for over 200 years.1
It primarily affects women between the ages of 10-39, and the primary symptom
is "post-exertional malaise" or PEM: debilitating, disproportionate fatigue
following activity, often delayed by 24-72 hours and not relieved by sleep.
That fatigue has earned the illness the misleading name of "Chronic Fatigue
Syndrome" or CFS, as though we're all just very tired all the time. But tired
people respond to exercise positively. People with ME/CFS do not.2
Given the dearth of research and complete lack of on-label treatments, you may
think this illness is at least rare, but it is actually quite common: in the
United States, an estimated 836k-2.5m people3 have ME/CFS. It is
frequently misdiagnosed, and it is estimated that as many as 90% of cases are
missed,4 due to mild or moderate symptoms that mimic other
diseases. Furthermore, over half of Long COVID cases likely meet the
diagnostic criteria for ME,5 so these numbers have increased
greatly in recent years. That is, ME is at least as common as rheumatoid
arthritis,6 another delightful illness I have. But while any
doctor knows what rheumatoid arthritis is, not enough7 have heard
of "myalgic encephalomylitis."
Despite a high frequency and disease burden, post-viral associated conditions
(PASCs) such as ME have been neglected for medical funding for
decades.8 Indeed, many people, including medical care workers,
find it hard to believe that after the acute phase of illness, severe symptoms
can persist. PASCs such as ME and Long COVID defy the typical narrative around
common illnesses. I was always told that if I got sick, I should expect to rest
for a bit, maybe take some medications, and a week or two later, I'd get
better, right? But I never got better.
These are complex, multi-system diseases that do not neatly fit into the
Western medical system's specializations. I have seen nearly every specialty
because ME/CFS affects nearly every system of the body: cardiology, nephrology,
pulmonology, neurology, opthalmology, and, many, many more. You'd think they'd
hand out frequent flyer cards, or a medical passport with fun stamps, but nope.
Just hundreds of pages of medical records. And when I don't fit neatly into one
particular specialist's box, then I'm sent back to my primary care doctor to
regroup while we try to troubleshoot my latest concerning symptoms. "Sorry,
can't help you. Not my department."
With little available medical expertise, a lot of my disease management has
been self-directed in partnership with primary care. I've read hundreds of
articles, papers, publications, CME material normally reserved for doctors.
It's truly out of necessity, and I'm certain I would be much worse off if I
lacked the skills and connections to do this; there are so few ME/CFS experts
in the US that there isn't one in my state or any adjacent state.9
So I've done a lot of my own work, much of it while barely being able to read.
(A text-to-speech service is a real lifesaver.) To facilitate managing my
illness, I've built a mental model of how my particular flavour of ME/CFS works
based on the available research I've been able to read and how I respond to
treatments. Here is my best attempt to explain it:
- After a severe (non-COVID) infection, an ongoing interaction between my immune system and my metabolism have stopped my body from being able to do aerobic respiration.10
- I don't know why or how, but my mitochondria don't work properly anymore.11
- This means that if I use too much energy, my body isn't able to make enough energy to catch up, and I have severe symptoms over the next few days as my body tries to manage the consequences.
- Those symptoms aren't limited to fatigue: I've developed flu-like symptoms and even fevers, limbs so heavy they felt paralyzed, tachycardia in response to even the slightest activity.
- [US] A Long COVID "moonshot" effort, drafted in April 2024 by Senator Sanders. Contact your representatives and encourage them to support it. Ask them to ensure the effort includes support for ME/CFS and other related conditions and PASCS.
- [Canada] National ME/FM Action recommended participation in public budget consultation processes and made a submission. Though the 2024 consultation is closed, you can still contact your MP to improve awareness and advocate for budgetary support. It may also be worth contacting your MLA to advocate for better PASC care in provincial clinics.
- [UK] Action for ME is advocating for a cross-Government Delivery Plan for ME/CFS care in England. Contact your MP and encourage them to support it.
- [Other] MEAction also regularly hosts government advocacy campaigns in the US, UK, and Scotland.
Testing 1 2 3
A few days ago 
The
Lately I ve seen people on the internet talking about victorian crazy
quilting. Years ago I had watched a 
I cut a 
For the second piece I tried to use a piece of paper with the square
grid instead of drawing it on the fabric: it worked, mostly, I would not
do it again as removing the paper was more of a hassle than drawing the
lines in the first place. I suspected it, but had to try it anyway.
Then I added a lining from some plain black cotton from the stash; for
the slit I put the lining on the front right sides together, sewn
at 2 mm from the marked slit, cut it, turned the lining to the back
side, pressed and then topstitched as close as possible to the slit from
the front.
I bound everything with bias tape, adding herringbone tape loops at the
top to hang it from a belt (such as one made from the waistband of one
of the donor pair of jeans) and that was it.
I like the way the result feels; maybe it s a bit too stiff for a
pocket, but I can see it work very well for a bigger bag, and maybe even
a jacket or some other outer garment.
My previously mentioned 
You can find all my photos on:
Reduce the size of your c: partition to the smallest it can be and then turn off windows with the understanding that you will never boot this system on the iron ever again.
To find the literal path names of your detected drives you can run fdisk -l. Pay attention to the names of the partitions and the sizes of the drives to help determine which is which.
Once you have a shell in the netinst installer, you should maybe be able to run a command like the following. This will duplicate the disk located at if (in file) to the disk located at of (out file) while showing progress as the status.
In the New VM window, select Import existing disk image 
When prompted for the path to the image, use the one we created with sudo qemu-img convert above.
Select the version of Windows you want.
Select memory and CPUs to allocate to the VM.
Tick the Customize configuration before install box
If you re prompted to enable the default network, do so now.
The default hardware layout should probably suffice. Get it as close to the underlying hardware as it is convenient to do. But Windows is pretty lenient these days about virtualizing licensed windows instances so long as they re not running in more than one place at a time.
Good luck! Leave comments if you have questions.