Grind Studio

Zeraph Dylan Moore

I'm a disabled artist with CFS/ME, a complex nuero-immune metabolic illness that causes me to be limited to my house and often my bed. Explore my life with CFS/ME through my blog and videos!


Saturnine

Sep 29, 2018 | Posted by Zeraph

Maybe this always happens this time of year. It’s almost October; then the Saturnine period from fall to Christmas, the death time. Not only because of the season or the feeling, but because people often die during this time…

I think one year I spent several months thinking that was me, that I couldn’t possibly keep living. Not depression, exactly, but the body sending out signals that surely this can’t keep going. Surely there is some bottom to this pit. At the time I was declining slowly but steadily. I stabilized. After a while (with medication) I improved. Now I am stronger, but completely overwhelmed by sensory sensitivities. In some ways this is more disabling than anything before. To see screens, lights, to concentrate, all wears my brain out until it can’t bear to experience any more stimulation. The other night, with my eyes shut tight in a pitch dark room, I find myself thinking: It needs to be darker.

Yet I (living, breathing, alive) don’t want to be unable to talk to people, unable to look at screens that connect me to people. I can’t go outside anymore because of the sensory issues. They’re so extreme, and they cause crashes — sensory crashes. Days of lying in the dark, audiobook, brief use of phone.

I don’t know how to address this, I don’t know how to fix it or even begin to approach it. My brain is on fire, I can feel the liquid heat of it in the way the outdoor sun burns my eyes and overwhelms my brain to the point of dissociation. I start to perceive in jumbled flashes: Tree. Water. Sky. Motorboat sound. Leaves. All strobing like I’m in a crowded club on a bad trip.

I know what the outdoors is supposed to be like. I remember its embracing energy, the calmness of the forest. I want that. I want to feel it. But I don’t feel anything like that. The outdoors is here but I can’t experience it because it doesn’t feel right to me anymore. It doesn’t feel like it is supposed to. So I can’t go to it. I can’t go home.

Yeah, maybe it was last year I listened to Leonard Cohen’s last album on repeat and fell, fell fell down into a darkness, a gloomy Saturnine place, a cool crypt within the hot body. And I was afraid, sometimes. And sometimes I wanted someone to take me in their hands — When I lived on Division Street, we had bags of potatos sometimes, and they would sit in the dark and sprout, and we’d find them too late for eating. And I would take them into the garden and press them into the earth, so that though they were loose and collapsing, their life could make new life. I imagined that someone could take me in their hands, like that, and press me into the soil, and make my life count in that way. That I could be able to rest, and fulfil my final purpose.

Fantasy.

I didn’t die, and I didn’t get better, and my body is still loose and collapsing. Is there a sprout, something green inside? Is there new life, begging to be let out, uncurling, using me for fuel? (Take it, take what you need.)

Am I still part of this? Of all of it?

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Living Deeply in Tiny Rooms (via Modspoke)

Sep 18, 2018 | Posted by Zeraph

Self-portrait in bed

Here is a question for you: Is your life small or large?

How do you know?

Is it possible to have a big life in a single, small room?

Or to lead a small life that is lived in many places?

Questions like these have become more pertinent to me lately. They surface when I am ensconced happily in my bed, writing, painting, designing or networking with other artists. They surface also when I am taking the comparatively hazardous journey outside, where the lights, sounds and unfamiliar vistas of the outdoors overwhelm me, sending my brain into a strobing cataclysm of sensory overwhelm.

They surface when I’m somewhere in between, too. When I’m in the living room of the house that I live in, a place I visit so infrequently that it seems like another country, taking a wheelchair ride to the shower or bath. At times like these, I may suddenly think, “My God—my world must seem to others so small—so sad!” But then that question bounces against a bigger and deeper feeling inside: “But my life doesn’t feel small or sad to me. Why is that?”

Perhaps I should explain a little about myself.

When I was twenty-five, I was enrolled in college at the University of Maine in Orono after concluding several years of traveling across the United States. I was studying to be an ecologist, I worked as a research assistant, and I was unhappy. At the time, I was engaged with a scientific field I no longer cared about in hopes of becoming someone I thought I ought to be—a proper scientist, not an artist who would never make much money. I wasn’t so much blossoming into adulthood as I was wilting. Life kept propelling me forward, rootless and unwilling, toward some future I could not conceive of and did not desire.

Perhaps that unhappiness was why I missed the first symptoms of my illness. Or perhaps it was simply because no one expects this to happen to them, this creeping and insidious sickness that hides in the shadows, barely seen, until it’s already made itself at home in your life.

However insensitive I was to the signs, I took notice when one day, after an ordinary afternoon of classes, I was too tired to walk across the campus lawn back to my car.

What would you do in such a situation? It certainly feels like an emergency, but you cannot call 911. You need help, but no one will understand.

I had no diagnosis yet to explain my symptoms. I had no idea what was happening to me.

Keep reading on Modspoke

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3 Key Tips for Dealing with CFS/ME Pain

Sep 17, 2018 | Posted by Zeraph

La Rose Loteria card

CFS/ME isn’t typically seen as a pain disorder because the fatigue aspect is so much more disabling. But many people do have pain to varying degrees.

My CFS/ME pain is mostly in my limbs and joints. I also have pain from other, non-CFS/ME problems.

When I’m in pain, I don’t manage my CFS/ME very well.

I am restless; I move too much. I try to distract myself. I don’t sleep as well.

Pain is fatiguing, and it can make other CFS/ME symptoms much worse if it gets out of control.

So what can you do to manage pain effectively when you have CFS/ME?

After having CFS/ME pain for five years, I’ve discovered 3 key tips for dealing with pain:

  1. Avoid triggers
  2. Treat pain early and adequately
  3. Use multi-modal pain relief

Here’s some more information on each of these points.

1. Avoid triggers

Triggers are anything that causes pain to start or to get worse. Avoiding triggers is the best method of pain relief.

Sometimes it’s not clear what the trigger is. This is one reason it can be helpful to use tools to track your pain, like a daily, simple hour-by-hour diary.

The Hourly Diary

The hourly diary is recommended by Martha E. Kilcoyne in her book, Defeat Chronic Fatigue Syndrome: You Don’t Have to Live With It (available from Amazon). She recommends making a short note every hour describing what you are doing and how you feel.

For me, diarykeeping was useful in understanding patterns that I previously just didn’t notice, even though I felt like I was pretty aware. For example, I noticed that I have an increase in pain and fatigue every afternoon and that my fatigue from exertion can be delayed as much as two or three days. As Kilcoyne explains, the diary can be as simple as one or two words per hour, so it is an accessible tool for some severely affected patients as well.

If holding writing implements is difficult for you (like it is for me) you can use a digital tool like a smartphone diary — I like an app called Day One.

Or, try one of these: 24 Of The Best Chronic Pain Apps And Trackers

For me, my top triggers are dairy, sugar, overuse of muscles, and lying down in “crunched-up” or curled position.

2. Treat pain early and adequately

Start treating at the first glimmer of pain! Treat the pain adequately, not just a little bit.

Don’t try to push through pain for any length of time — it WILL get worse.

When you have CFS/ME, it’s important not to let pain slide. Often, pain comes on mildly and intensifies over time. If you wait until it’s intense, it’s probably too late to treat it well or prevent it from impacting your other symptoms.

3. Use multi-modal pain relief

Good pain relief often involves more than one modality or method. After all, pain is a complex, bodywide experience that affects us in many ways!

I conducted a poll in one of my CFS/ME support groups to see what pain relief methods CFS/ME patients found most successful. Here are the top 10:

  1. Heating Pad / Heating Pack
  2. Ibuprofin
  3. Epsom Salt Bath
  4. Magnesium
  5. Going dairy, gluten and sugar-free
  6. Naproxen
  7. Distraction
  8. Ice
  9. Paracetamol/Acetaminophen
  10. Meditation

There’s no need to wait to administer pain relief— I go ahead and use all my safe available modalities right away, as long as they are OK to use together. (Of course, be cautious around opiods and any other dependency-forming substances, or substances that may affect your ability to conduct yourself safely.)

If you aren’t mentally competent to determine what medicines to take or how much to take, it is crucial to get help from a responsible person or medical professional. People with CFS/ME during flares can become too confused to correctly self-administer medication, so be aware of your mental state and get help as needed.

I find it helpful to list all the things I can do for pain, so that i can refer to the list later when I am in pain and unable to process or brainstorm clearly.

What do you find helpful for treating pain?

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Pain Relief for CFS/ME?!

Sep 03, 2018 | Posted by Zeraph

I found an awesome pain relief cream that works for my CFS/ME and fibromyalgia pain!

Where to get Penetrex

My CFS/ME Fight Wish List

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Ready, Set, Rest! Pacing and Aggressive Rest Therapy (ART) for CFS/ME

Nov 14, 2017 | Posted by Zeraph

Several months ago, I clued in to a therapy that I believed would help me. It was a combination of pacing (staying within the “energy envelope,” or available energy for that day) and aggressive rest therapy (ART), a strategy of planned resting.

Often people with CFS/ME are encouraged to exert themselves as much as they can by doctors, family, or simply by their own responsibilities. Over time, patients physically decline as they repeatedly overstep their boundaries in order to keep up with the demands of life, or to do what doctors ask. Others remain relatively stable, but at a level of illness that prevents them from doing most of the things they enjoy.

Pacing and ART are attempts to stabilize and reverse CFS/ME by allowing the body time to recover from reasonable exertion while avoiding excessive exertion. I believe that pacing and ART give the body space to use its natural healing abilities to heal the damage to the body that is caused by CFS/ME.

Aggressive Rest

For me, aggressive rest began with a short period (about two days) of total rest – no lights, no sounds, no watching TV or using any devices. I simply lay down, slept, or relaxed.

After two days, I began a more “active” rest period where I alternated rest periods with easy activities. For me, these easy activities took place in bed, because I was already bedbound. I used my heart rate monitor to keep within my limits. (I’ve chronicled many of my experiences during this period on this blog.)

As I gained strength, I used several “rules of thumb” to guide my activities:

  1. How much do I feel like I can do today? OK, now do half of that.
  2. Sudden improvement doesn’t mean I should do more – it means what I was doing is working.
  3. Rest before post-exertional malaise strikes.
  4. Rest more deeply than I feel I need to.
  5. If I want to know how I’m doing today, don’t rely on how I feel today — the true results will show up tomorrow, or later.

Pacing

As the body heals, gentle motion can be introduced to strengthen muscles and increase the number of mitochondria. Such “exercise” should be gentle enough to not cause PEM (post-exertional malaise).

While performing these gentle exercises, care should be taken not to exceed the body’s abilities. A heart rate monitor with alarms can help to avoid exceeding the anaerobic threshold, commonly set at 60% of the max heart rate, which is 220 minus the person’s age.

For people with moderate to severe CFS/ME, it is best to set the threshold lower, such as at 50% – 55% of max heart rate, to start. My alarm is set at 50% or 55%, depending on my activity level and how I am doing.

To succeed at these techniques, it’s necessary to control as much about your life as possible. If unexpected challenges come up constantly, it will be hard to pace effectively. Sometimes things cannot be avoided.

Lastly, it’s important to have support in doing pacing and ART; it is hard to do. Staying still is work, and doing nothing is work, too.

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Tidal variants: staying steady within the shifting landscape of illness

Aug 25, 2017 | Posted by Zeraph

It’s been tough lately. Sometimes I don’t want to write about that here, because I’m not sure that suffering is instructive, that it has value that can be transmitted to others. But it is sometimes the truth.

I’ve been pacing using a heart monitor for about a month now, which entails using a heart monitor to “pace “myself, that is, to stay within the energy envelope allotted to me each day by CFS.

At first, there was a clear trajectory of healing. The more I rested the better my heart rate was, and the more I could do without raising it problematically high.

However, as I started to do more, my heart rate jumped up and hasn’t come down with any consistency. I still had energy to do some things, and that meant a lot of painting and being able to express myself in ways that are often off-limits to me due to my disease. But I knew that in a way, I was on borrowed time, benefiting from my earlier rigorous resting. I knew I would run out of energy eventually, and there didn’t seem to be anything I can do about it. And that has come to pass, with the last couple days being very low energy with lots of pain.

What I find hardest to deal with about all of this is the jitteriness and anger that it produces. I am so frustrated by not being able to do things that I want to do, and my frustration has no outlet. I would love to exercise or clean or spend hours painting like I used to, because these things give me a way to work through challenging emotional energy. I’ve use these methods to cope for a long time, and CFS has mostly put them out of reach.

However I really do treasure the time that I have had recently when I have had more energy and have been able to do more. I read a book, I painted quite a bit, I talked to people. Sometimes in these interactions, there is something close to freedom. I want to have that, to have more of it, to increase it. I’m dedicated to that goal, but the path is anything but straightforward. It involves constant problem-solving, endless determination, and undying patience.

So I struggle on. In a lot of ways I’m just praying for strength, reaching out to the world around me in the hope that it will in some way fortify me. This is a struggle not just to bear up under my illness, but to actually make headway in defeating it. The scope of the struggle is so great. If I was looking for a teacher of patience, I found it.

So I keep on. I hope along the way there will be enough moments like there have been in the last few weeks, times when I’m able to do things that nourish me on the deepest levels. If I have that, it will help me keep my head steady and resolute in pursuit of what I need to have to make my life worthwhile again.

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Interview with a CFS/ME Caregiver (Mom)

Aug 12, 2017 | Posted by Zeraph

My mom has been a steadfast support and caregiver, and in this blog post I asked her a few questions about what it’s like to be a CFS/ME caregiver, getting her thoughts on resources for caregivers and where people should be looking for more information on CFS/ME now.

Comic by Ben Montero
Intro/Outro by Puscifer, “The Humbling River”
My CFS/ME Fight Wish List

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