Creativity and the Fear of Being Forgotten

It was about seven months ago that I made a post begging the question, What all could you do if you just changed your expectations of how to do it? And I affirmed that I was bringing out my art supplies again, because I could still paint if I relaxed the restrictive expectations I put on myself of how it needed to be done.

And thus, over the course of two months, I made this.

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

a piece I only previously attached to the bottom of one of my posts. quote by David Bate.

Then last month, I had a major epiphany.

It started as a sort of existential crisis, seeing a different butterfly on Instagram which I immediately wanted to paint…until I thought about the actual process of doing so. Then I became very drained, and I couldn’t tell if I just didn’t like painting anymore, or maybe I was just really overwhelmed by all the work it would take. Those seemed the most probable reasons. And yet…

The entire week prior to this, I’d been schooled by the Universe from every corner on the differences between who were once were and who we become. How we progress into completely different people, if we’re doing it right. Even the “us” of several years ago, we are the same, but–to pull from an episode from How I Met Your Mother–it’s as if we are our own doppelgänger, after having changed so much.

I mulled over my mysterious lack of artistic enthusiasm all day, a bit thrown off at the idea of myself, with so much talent in the field, possibly not wanting to “art” so much anymore. Do people really just stop being artists? How was it that I identified such a need to paint and yet all I felt was frustration? How was that even possible?

Then something happened that knocked me off my metaphorical feet.

 

I love dance and watching it. So there was a PBS special airing on television–Dancing at Jacob’s Pillow: Never Stand Still–and when I caught it, they said something really profound about one of the men in the business.

Ted Shawn, toward the end of his life, wrote, “It is a paradox that I, who have a strong desire for what will endure, and will be permanent, should have chosen the art form which leaves nothing but memories. And yet I am satisfied this is my medium, and my destiny.”

It was exactly what I needed to hear to tie together all my pondering of the past several days. The Universe had been preparing me to let go of who I was trying to force myself to be–just because it’s who I’d always been–and embrace all that I was now. And in the moment I turned on the television, I was receiving a wake-up call.

Hearing that segment helped me recognize I wasn’t so much being an artist, as I was clinging to the idea of being an artist to escape a common human emotion. I realized that I wanted to paint and produce art, not out of a genuine desire and love of the process, but out of fear of not leaving something behind more than memories.

That was a difficult pill to swallow, but finally everything made sense. I was frustrated because the act of painting, in that moment, was no longer about expressing joy, but controlling anxiety.

 

And maybe I’m not as much of an artist as I used to be, but I am multifaceted, as are we all. Since relieving myself of that burden and seeing things as they are instead of how I want them to be–or through the lens of fear–I also realized that over the years I’ve slowly made the transition from Artist to Writer. And I say transition because in the past I’ve always been an artist first and a writer second, but now, my creative spirit flows much more effortlessly through the medium of words. I also enjoy being an amateur photographer–the key word being enjoy. And this time, I know better than to jump from one label to the next with the implications that it will save me from the fear of being forgotten.

I have the desire to create, and I still very much enjoy painting, and photography, and writing. But doing something out of fear, is not divine.

a piece I did a few days ago, out of the blue, for fun, with random inspiration

a piece I did a few days ago, out of the blue, for fun, with random inspiration

a rainbow at night

What all could you do if you just changed your expectations of how to do it?

My art supplies have been in the largest cabinet of my six-foot-tall dresser since I moved into this house, and even in the old house, they were put away because I was too sick to do anything except extremely sporadic artwork. And I don’t believe in putting a bunch of “supposed to finish” projects out and about; I think it leads to stress. I didn’t need to stare at things that were impossible at the time, reminding me of what I couldn’t do because of the effects of being in treatment, and the limitations imposed by disease. I think the things you need to put in your immediate vision, around your workspace, are the things you’re actually going to work on.

And now it’s time to bring them out.

 

I am going to paint. I am going to convert my desk–which up until now has been used for normal desk activities–into a place for my art supplies. My white writing desk is going in the living room, and I’m bringing in my larger, flatter one to better serve my purposes. And a lamp. And a printer. But I digress…

Most won’t understand the significance of me, someone with OCD, converting their perfectly markless desk into an art station, where it will most certainly become covered in…everything.

Luna got me more watercolours.
Melissa got me more charcoal.
I just re-found my ink.

Things are not going to stay clean.

 

I can’t do art like I used to do. (Or perhaps I could, just once, but having my arms take two months to recover from such an unwise activity is just..dumb.) And you know what? That’s okay. Now I can do different things, perhaps better things. I’ve only recently begun to see the thrill of painting, and I can learn more. I just can no longer expect myself to sit down and complete a project all in one go, like I used to…

And it wasn’t bad that I did things like that. It was what I was capable of at the time. If I had a random hour of being able to sit up then I had to use it wisely and do whatever I could in that hour, because it could be months before I got that chance again. My usual daily limit of being upright was less than 30 minutes per day, which I usually needed to eat and bathe.

Long before that, I would draw for hours at a time, relax with music and my pencils and everything else faded away…

But some days I still may be able to paint for hours, like the day I made this poster for my niece, combining some ideas I saw on Tumblr:

For my niece, so she will have something to remind her that someone thought she was amazing and wonderful.

 

Other days, and probably most days, I can go back and forth between desk and bed–whether it’s a physical desk or my overbed desk–sitting up and painting for short stretches of time, and lying back down while I wait for the paper to dry between layers. (That works out, doesn’t it?) And I’m okay with having to do that.

I’m not going to stop doing things just because I can’t do them the way I used to, or the way I want. The end result is still possible, I just have to achieve it in a different way.
What do you think you could still do if you just changed your expectations of how it “needed” to be done?

 

a rainbow at night

Another chapter in “ibuprofen always helps,” and the last of the 30-Day Challenge.

I have deductions to report! And photos of my random art and photography! Carry on if you’re brave…

 

Okay, so remember when I–… Actually, I don’t think I said that on this blog. But on Facebook or Twitter, I had mentioned being concerned that the Liver Chi, because it activates the immune system, might cause issues with the M.E., since in the past it’s been like this:

  • Take steroids → M.E. gets better
  • Take immune-activating anything → M.E. flares

So I was thinking maybe it wouldn’t be so bad if I was on the Nasonex at the same time, because they might cancel each other out, with the Nasonex lowering the immune system and the Liver Chi activating it. I started them at the same time and all was well. But, two days after stopping the Nasonex, I had M.E. problems. Coincidence, possibly; I’m not sure. But then this other thing started.

My heart palpitations went through the roof. From maybe one noticeable skip every other week to at least one every hour. :\ I was very concerned, and I thought it might be the Biaxin because it can disrupt one’s QT interval and I sometimes have problems with those medications. My heart beat had been unnaturally fast, even when I wasn’t dehydrated. It averaged about 112 when lying down completely relaxed. And the irregular beats, well… Very prominent, made me cough every time. (Vagus nerve, cough, heart rhythms, all that goes together.) Then one evening several days ago, I needed an ibuprofen for a headache. Just 200mg to start with…and I noticed I didn’t have a single heart palpitation the rest of the night! I thought that was odd… The next day I woke up and took my Liver Chi. My heart went to racing again. After about two hours, I thought, I wonder if I take another ibuprofen… And I did, and my heart rhythm went back to normal. So, the past few days I’ve been taking ibuprofen with my Liver Chi doses, and I haven’t had any problems.

Then today I thought, okay, we have to make sure this isn’t coincidence, so I didn’t take the ibuprofen with the Liver Chi. My heart rate started climbing again. I took ibuprofen, and again, it went back to normal. I have a cardiologist appointment in a week and a half to find out what’s happening, but…

Now I’m wondering, what is going on? Is my heart inflamed? Or my nervous system? What is happening that the liver chi causes a problem and the ibuprofen stops it, that connects to my heart and my heart rhythm? Is it M.E. related? Or something to do with the connection between NSAIDs and orthostatic hypotension? I’m prone to thinking it’s something inflammatory, because this only started after I stopped the Nasonex. But. I don’t know! I just had my bloodwork done so we’ll see how my liver enzymes are holding up next week, and then we’ll see what else happens between now and my cardio appointment. Maybe it’s a herx, who knows. :\

Also, re: Nasonex and my eye problems: Coincidence, because my eyes are still giving me problems. And re: Breathing issues, I have not had any of that since.. well, it continued on several days after my last post, and then stopped. Whether or not it might recur, who knows, but I haven’t had it happen since.

Another random problem I’ve been having is, once a week I involuntarily stay up til six, seven, eight in the morning, until I finally get sleepy and go to bed. I just don’t get tired, and nothing can make me sleep! After four weeks of this, I figured out it was the Flagyl, because it happens after being on it two or three days, of the four consecutive days I take it per week. A friend who was on Tindamax said it did the same thing to her. It’s funny because when I first started Flagyl, all it made me do was sleep, and now…

 

So my brain fog hasn’t been as bad lately! After I made that last post, things got better. Over the years I’ve noticed it seems to do this, cycle in and out; when it cycles out, I read tons and enjoy my brain functioning. I even took a test on my reading speed and got an above-average score! (You read 305 words per minute. That makes you 22% faster than the national average.) And I even passed the three questions they asked afterward! But you know the interesting thing? (And this is how my brain has learned to function over the years of losing regular short-term memory ability: Plasticity is amazing.) I didn’t answer the questions correctly because I actually remembered what the story was about, but I answered them based on what words I remembered seeing. Just an example of how the brain learns to maneuver around its deficits and try to figure out other ways to be functional. When I first took it I was excited because I thought it meant I had reading retention, but. I really didn‘t remember what I had read, just the words I’d saw. I took it again today and now I remember what I read, though! :)

Okay, now enough symptom recapping. I finished my 30-day Challenge. It only took me..almost three months, aha, but I still got it done! Here are some of my final pieces–just quick blobs of watercolour, really, with the occasional photograph. As always, click on “Permalink” when they open in the gallery, to read more about any piece you want.

 

a rainbow at night

On livers and Lyme and dystonia and…another antibiotic break.

On Thursday, the 5th of April, I upped the minocycline to 200mg a day. For the next few days I only noticed a greater need for sleep. Since starting the minocycline in general, I had a greater need for lortab/vicodin (at least once a day) to deal with the head and neck pain (read as: severe), so that also got worse temporarily before tapering off into less-severe pain.

Mostly because of this, my sinuses were really bothering me (hydrocodone causes a release of histamine, and when you stop it, then you can get a rebound release of it), so I had to take Nasonex for several days–it helped so much, and by days Three and Four of being on it, I was outside taking pictures of flowers!! I figure it might have been helping subdue some of the herxing because of its immunosuppressive tendencies. After day Four I was able to stop that, too, since my sinuses had returned to normal.

Then on the 9th I got a fax from my doctor saying my liver enzymes were very elevated. This, after them being perfectly normal two weeks earlier, and me still taking milk thistle three times a day!! I was upset, but I had to stop all antibiotics again.

I don’t know if it was from not taking my antibiotics, beginning that morning when I got the fax, or rebound inflammation from stopping the Nasonex, but I felt absolutely horrid starting that day, and did every day after/have every day since. We’re talking complete flu-feeling and just.. awful. It was the metaphorical equivalent of hitting a bear over the head once, and then standing there staring at it. Lyme is a very, very angry bear. To further my physical suffering, a few days later my Lyme flare up began! D:

And then an old Lyme-related friend came to visit me: Dystonia.

(I tried to kick it out–you must mean the house down the street, no rainbows at night, here!–but, that didn’t work.)

And not just dystonia, but that special brand of dystonia with parkinsonism thrown in there that makes me unable to walk, that makes everything on my left side either fail and freeze, or flail and dance. (Why does Lyme like the left side so much? No one can figure it out, not even the doctors.) It began on the 14th, when I got out of bed, took two steps, and my left leg decided it wanted nothing to do with this “walking” business. Luckily, there are wheelchairs. I still had a lot of movement problems even wheeling about the house, but standing up makes it so much worse in general, even if I’m not trying to walk. It got worse on the 15th and 16th…

I wish I could adequately describe what this type of movement disorder is like. A dear friend of mine in Pennsylvania has the exact same problems I do (also hypertonia, also brain lesions) and despite telling her this, she really didn’t “get” that we were having the same issues or that I really did understand what she meant when she explained them! Then one day I guess I explained it pretty well, and she understood, and didn’t feel so alone. I wish all of us Lymies could record ourselves having these problems and put them on YouTube to give each other some comfort that we’re not alone…but I don’t know how many would go through with it. I know I don’t want people to see me when I’m having these problems; like most, I’d rather just wait it out! :\

Anyway. So a typical “episode” of this happening might start with me attempting to walk. A varying amount of time passes before I slow dramatically and then my left leg will start to drag. If I stand in one place it often curls inward. If I try to walk it is essentially frozen, or moves so little that I might end up walking on the tips of my toes to compensate. Something around my hip/thigh happens and my leg jerks upward, causing me to simultaneously fall forward, often twisting my neck to one side at the same time “for some reason.” I don’t always have to be walking for this to occur. I know low oxygen (or at least low oxygen ratio) makes this worse, because supplemental oxygen always helped in the past.

“A major principle of body movement is that all muscles have an opposing muscle. Movement is possible not just because one muscle becomes more active, but because the opposing muscle relaxes. …Rigidity comes about when, in response to signals from the brain, the delicate balance of opposing muscles is disturbed. The muscles remain constantly tensed and contracted so that the person aches or feels stiff or weak.”

Other times it involves my face and neck–like an episode of Bell’s Palsy that isn’t so much the nerves (I don’t think, at least) as it is the muscles contracting, and causing issues like facial grimacing, an inability to open my left eye all the way (lots of times I cannot look upwards, which is truly disturbing–I don’t think this is dystonia but I wanted to mention it anyway), and my tongue might tremor, etc.

This time, much to my dismay, my arms were involved, interferring with my typing. :( It wasn’t the M.E., and it wasn’t the neuropathy that’s started to invade my arms causing the weakness, but something different. (It’s probably impossible for me to put the difference into words, but I know what that feels like.) They were doing the same thing my legs did–gradually getting slower and slower and it was as if the nerves were failing to send adequate signals, where in my head I was giving them the action I wanted them to perform but everything was going very..very…..slow…… :| (But not the paralysis and takes-five-days-to-recover like the M.E. muscle failure; this is far more neurological.)

And then the 17th happened. Or rather, the night of the 16th when I tried to sleep. I spent all night waking up every hour going “omg I’m going to vomit” and “omg why is everything moving” and then when I woke up once at 7am, the back of my head was killing me (figure of speech, of course). And thus began the cycle of the next five days. But at least after about the 18th, the dystonia and parkinsonism got better and I could walk again. Oh, the things I had happen every morning… One morning was like I described above, for another it was all I could do just to roll onto my back and take medicine, another was gastrointestinal nerve problems that immobilized me in pain, then to add insult to injury, I woke up dehydrated, because I usually do during Lyme flares; it has been an incredibly difficult couple of weeks! What got me through it was knowing that it would pass.

And it did.

The 22nd I felt good enough to take a ride to the city. Well, with the help of adequate medication for pain and inflammation. Right now I’m waiting for a supplement to arrive (tomorrow), so I can resume antibiotics.

I can’t thank God enough for such an absolutely amazing doctor to get me through all of this. Especially after so many years of people who didn’t know what they were doing, no idea how to help me, or just passing me around from doctor to doctor. (From primary to cardiologoist to neurologist to immunologist to infectious disease specialist to another cardiologist to another neurologist to a movement disorder specialist to…) I feel safe in God’s hands and my LLMD’s experience to get me better. He called and told me this herb collection to order for my liver, called Liver Chi. He says he has patients with Lyme-induced MS who are on triple IV antibiotics, their liver enzymes inevitably going high, but who can’t stop treatment for fear of their disease progressing. He thinks I am in that group with the rate that my symptoms progress the moment I stop antibiotics. And if this supplement (a mix of chinese herbs) has been able to bring theirs back down to normal, on all of those antibiotics, I’m sure it can help me get back in treatment! So he said to take a two-week break (which I have), and.. essentially, don’t wait, get the herbs, and resume treatment whenever I got them. And of course keep checking my enzymes.

 

I’ve been doing a lot of art lately to help me cope, so here are a few pieces. Three photos, three paintings. You can click on “Permalink” when they open in the gallery, to read more about any piece you want.

Things I want to add into this post but have no idea how:

  • Ibuprofen always helps. Always.
  • My PCP says I should tell my cardiologist about the fact that I feel like I’m going to pass out when I take a deep breath–I actually had to lie on the examining table this time, which is new. My first guess is my usual lack of my heart rate variability and the fact that it’s supposed to vary when you inhale deeply, but mine often doesn’t… But that’s autonomic neuropathy for you.

a rainbow at night

Mini-update on treating with Flagyl (and a painting).

Let’s see if I can suppress my urge to ramble and post the basics of what’s been happening. I shouldn’t need to go into too much detail because there’s not much more than this that I’ll need to know for future reference.

My insurance covered Tindamax up until January 2012…so they denied me coverage for it. Twice. I didn’t want to stir up trouble or questions, so I told my LLMD not to worry about appealing it again. I instead started on Flagyl. No big deal, right? I’ll just be on a less-effective, more toxic medication, for longer, because of no Tindamax. Regardless, it’s what I have to work with, now! The first week’s pulse brought out a burst of my neuropathy after each dosage, and worse neurological symptoms in general, such as a terrible ptosis of my left eye (it was the worst I’d ever seen it). After that, everything stopped, including my previous symptom progression, and now I actually feel worse on the days I’m not on it…! (This is the last thing I’d expect to feel while on Flagyl!!) But speaking of which…

My routine liver panel has revealed my enzymes are high. Now, they’re just a few points above the normal range. But when my usual, pre-antibiotic numbers (or pre-Bactrim, I should say, since that’s what made them start rising) are in the high teens, and now they’re in high forties and fifties, that’s triple what is normal for me. My LLMD is on vacation right now (which he really does deserve, but goodness, out of all times for me to need him!) so I can only imagine what he’d tell me to do. Which is take a two week break and get the enzymes within normal range before continuing. An LLNP online thought it’d also be a good idea to break. So I upped my Milk Thistle to three times a day and stopped everything but my vitamins, and hopefully within 2-3 weeks I’ll be able to start this Minocycline in concurrence with Flagyl.

My left sided twitching has been flaring the past week. It hasn’t gotten to full-blown-dystonia level, yet. I had my “three weeks of headaches” end, then a 4-5 day flare up with the Lyme flare, and I’ve since been fine, with no headachess for about a week. I can’t think of any other remarkable symptom stuff… Oh! But my heart functioning is the same as last time, says my echocardiogram from last week. :)

And last, but not least, my site (if you haven’t noticed) is now arainbowatnight.com! :D

  a rainbow at night