Crawl into your lair!

Halloween approaches.  Who better to represent this holiday than someone like me? I'm like a creature, abdormal…mostly living in my lair.
Ha ha

I've been pushing it a bit lately, and then crashing. Sometimes I'm so ill and weak and utterly fatigued that all I want to do is curl up in a ball and disappear.

On the other hand, I'm still having moments where I function (a little) briefly, so that's nice.

For a week now I've thought I had a cold or flu, then changed my mind, then changed it back.  My throat's been worse, my achiness/fluiness worse, and major sinus issues. All these, however, could just be M.E….it's crazy making.

After 6 months, I was able to find a few moments to work on a print. For fun, I'll post a series of photos showing the process.  The image was created by carving two blocks, inking them with oil ink, then pressing them - whereby the image is transfered onto paper.

Then later, I added the yellow and the canoe with watercolour paints, so this is technically a mixed media piece.  Not the best, but not the worst either. I like the feeling of movement with the piece.

first carving

carving with ink

Paper image with bottom layer of ink

key block (or top layer) inked up

paper showing two block (two colour) image

More colour added to tamaracks, aspen and canoe
with watercolour paints

On another note, I saw a long article, a follow up, from the video I posted last time. So if you want to know about the huge immune project going on at Standford, (and you're up for reading a long article) here you go.  At least it's hopeful making:
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

The good ones are rare…a hopeful video

My nurse practitioner, the last time I talked to her, made some off-hand comment about the backwards Drs in this town.  For some reason it seems like every specialist and almost every Dr. I've seen here has been disbelieving of M.E., patronizing and chauvinistic.  It's like Medicine back in the 50s or something.

And on top of that, M.E./CFS is completely off their radar, nonexistent, not really an illness.  So getting any kind of help/treatment is almost impossible.  Now that my specialist is gone, I'm on my own.  Which means, basically, that my best course of action is to stay away from Drs., and if I have to see one, to lie about my diagnosis in order to get good care???!!!

Anyways, with the CFS politics in the US right now with the P2P and AHRQ which was supposed to come up with a good overview of current research and treatment of CFS/ME, but excluded most the research that shows abnormalities (for a number of reasons, some legit), and included research that was done on patients with a very broad inclusion criteria (i.e. that included people who were merely fatigued = not all of them had the disease M.E.), and to boot, as far as I can gather, few actual M.E. experts were included in the process:

If you want to read various perspectives read: http://www.cortjohnson.org/blog/2014/10/15/ahrq-report-excluding-progress-exclusionary-factors-missing-studies/
or read this: http://phoenixrising.me/archives/25905

Mostly, I've been trying to stay away from reading about it, because I just find it scary and depressing.

I feel as if there is little hope for the millions of us locked away in our homes, in our sick bodies, some for decades. I was feeling hopeless as far as seeing any possible treatment for future sufferers.

But today, I saw this video:
 http://www.youtube.com/watch?feature=youtu.be&v=pvtbsStLQWk&app=desktop

Which reminded me even if they're rare, there are great doctors, researchers and research centres out there that are getting somewhere…and this one is located at Standford no less.  I wish I wasn't too sick and poor to go there.  Since my version of M.E. has always been viral, I bet they could help me. If I were rich and could teleport.  Imagine even getting a part of my life back???!!!!

Anyways, I thought I'd share it.

On another positive note, I've had the best 2 weeks in ages! I'm still ill and feel like crap, especially in the afternoons, but overall I'm feeling less sick.  I said to my roommate/friend the other day, "I feel like I have a personality again".  Sometimes anyways.  I know I can fake having personality sometimes in public, but the reality is that mostly I just feel like a disease…like a sick body.  I'm so overwhelmed with weakness and malaise that I'm almost not a human, or the human in me is buried.  To have a few moments where I remember there's a person in here, under all these layers of fatigue and illness is a treat.

I don't expect it to last, it never does, but I'm enjoying a few rare moments of less sick.

A Rare Visit

First of all, thanks so much to all of you who commented on my last post.  I really appreciated the kind words of encouragement and empathy.  Comments help me remember that I'm not alone, and/or not the only one trying to navigate life despite this nasty beast of an illness.  Of course the things that bring me down about my life aren't gone, but overall I'm feeling better this week (emotionally).  And also less lonely (see below).

Today, like most days, I am laying in bed feeling very fluy, weak, sick.  My legs are especially shaky and weak when I stand for more than a minute or so.  So I'm forced to rest.  I learned when I had my fall this summer, not to push through with shaky legs.

This past weekend, I had a really wonderful experience.  A friend who also has M.E. came to visit! We have known each other for about 10 years now, we met online, a couple years after each of us got ill.  She recently moved a few hours away from here, and her husband and her came up for the weekend.

It was so amazing to be around someone who I didn't have to explain anything to.  For example, both of us had to lay down at different times, or stop talking/cut a conversation off because even talking can be so draining. Conversely, with friends and family members sometimes, if I cut a phone call short, or leave a conversation, they take offence. They think it has something to do with them personally, or worse, think I'm just over-reacting, that I can't be so drained/sick that I can't talk, I'm just not very tough.

The type of bone crushing sick/fatigue, and lack of stamina that comes with this illness, is something that I don't think I could ever explain fully to someone who hasn't experienced M.E. - maybe if they've had Mono?

Since my visitor and I have been friends for almost a decade (phone calls and emails), are a similar age, have been ill for about the same amount of time, and were both very active busy people in the prime of our lives when cut down by M.E., it was super comfortable to hang out.

Not only that, but our dogs got along well together.
Here they are swimming in the lake.

So if nothing else, that made my month, to have such great, understanding company. We visited, ate good food, watched a movie and TV.