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 making art with CFS/ME through my blog and videos!
Nov 25, 2018 | Posted by Zeraph
For the second time this year, I challenged myself to blog daily about my experience with ME/CFS, while also trying new things to improve my symptoms every day! I did this over at my Instagram, under the tag #14DayMEChallenge. You can view my posts here.
“Challenges,” whether 7, 14, or 30 or more days, are popular right now. They often involve doing something every day for a period of time, and they can be a good way to improve a skill, build a habit, or improve yourself or the world in some way. Some people take photos daily, or draw something daily like in #Inktober; other people focus on self-care or health.
My goal in doing a ME/CFS challenge was twofold: I wanted to create a form of accountability for myself, and I wanted to benefit from a focused attempt to rest more often, which is one of my self-care goals. If you don’t know, I follow a strategy of resting throughout the day and also taking periodic rest days in a patient-developed treatment protocol called aggressive rest. Aggressive rest just means that you rest before you’re forced to by your illness.
One of the biggest changes I implemented throughout my 14 Day Challenge was to get serious about completing my daily checklist. I use an app called Streaks to manage 12 daily self-care tasks. Streaks is an iOS (iPhone/iPad) app developed by the folks at Crunchy Bagel, who by the way are super nice and have had meaningful email exchanges with me about how to improve their app. The app is a one time fee of $4.99 (I get it, that’s steep for an app) but it’s really helpful to me and it does exactly what I want it to do.
I also started using Downtime on my iPhone and other Screentime features meant to help you manage and limit your phone use.
However, I found quickly that these features don’t work that great. Screentime is super inaccurate and Downtime (a scheduled time when your phone stops letting you use apps) is just too inflexible for me. Currently, I only use the feature that limits my time on game apps and social media apps, as these seem to work well enough.
The next idea I started exploring was this idea of doing “10% better” at resting and self-care. I generally had been pushing myself to do a lot better with resting, and to be honest, I was failing… or felt like I was failing… often.
Spending time doing nothing is super hard, even if it sounds nice to think about. And I’m a very motivated person with a lot of projects going on, too.
When I was younger I was actually a trained volunteer HIV and sexual health educator, and among people who do that sort of education, there’s this idea of harm reduction. That means, basically, “We understand that human beings are gonna be human beings, and probably do things that might cause them some harm. So instead of telling them to just stop, which won’t work, we’ll give them tools to do it more safely.”
So what if we apply this idea of harm reduction to resting and pacing with ME/CFS? That’s where I came up with the idea of doing “10% better” in my efforts at healing. It’s a series of little improvements that I hoped would add up over time.
But I would have to see what happened over the course of the challenge.
This kind of led into thinking about new ways to rest that weren’t so drastic and weren’t so impossible-feeling for me. I know that resting works for me already— but I just couldn’t MAKE myself do it!
One of the things you learn with chronic illness, and with life in general, is that you can’t fight your body and win. You also can’t fight your mind. It’s kind of a “flow-with” situation. How can you accept and flow with your current mind and body in a way that supports your eventual goals?
Out of these thoughts came a new strategy of resting that I call 1/2 Hour On/Off. This means that after doing any activity for 1/2 hour, I rest for 1/2 hour. Both activity and rest are defined by me, the individual.
For me, activity might mean typing, light cleaning, using my phone, and any kind of work.
Resting meant listening to an audiobook, watching videos, or lying down doing relaxation or meditation. I found it was really helpful to give myself options. When I get antsy during a planned 1/2 hour rest period, I can switch activities as much as I need to.
For someone who is more mildly affected with ME/CFS or more severe, the meaning of rest and activity will change.
Toward the end of the challenge, I started using Flaredown app, which is a multi-symptom tracker for iOS and Android. It allows you to graph different variables against each other, including symptoms, treatments and special factors that may come up in day to day life. It’s for a huge range of chronic illnesses and conditions.
For me, the jury is still out on Flaredown. It very much feels like it will be what you make of it. It’s up to you to make sure you’re tracking the right variables and that you’re accurately recording your symptom severity.
I am always pretty unsure if I’m recording things correctly, as they may change throughout the day and I can only enter my answers once per day.
Short answer: Yes.
The challenge actually helped more than I thought it did. I had hoped to use it to build good habits and find new ways to manage my illness, but I also had a secret hope that I didn’t say much about: I wanted to improve my baseline. This is a really elusive and important goal, and one of the hardest to achieve. But without changing the baseline itself, recovery is not possible.
Mostly, I have moved my baseline through medication. I’ve stabilized declines simply through my behavior, but it’s rare to raise my baseline permanently just through my own actions. I hoped that the challenge would actually help me do that. After all, if I am going to recover, I need my baseline to improve regularly.
Through the gradual and small improvements in the challenge, I gained new tools that helped me do a little bit better every day,and over time these changes added up. In the few weeks since I did the challenge, I’ve had more energy than I have had in the last year. I’ve become accustomed to having productive time every day, and it doesn’t build up fatigue until I crash. Instead, I am mostly still fine. This is a great indicator of a shift in the baseline.
I still need to stay attentive and keep doing “10% better” (harm reduction) and doing 1/2 hour on/off days (aggressive rest). But I’m feeling more energetic than I have in a long time. I’ve had days where I’ve cleaned, organized, painted AND worked on the computer in the same way — an impossibility for over a year now.
Thanks for following my healing effort – by following my blog, Instagram or Facebook, you’re literally a part of my healing team. It wouldn’t be possible to do the 14 Day Challenges without a community of people caring, encouraging, and learning along with me.
If anything I tried in my challenge appeals to you, let me know! I’d love to know what you are trying out for yourself.
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Nov 18, 2018 | Posted by Zeraph
It’s the most magical time of the year: First snowfall (here in New England, anyway) and the start of the Christmas season! However, it’s also time for lots of cold and flu bugs, and those come on top of the extra symptoms that many of us with ME/CFS experience year-round.
If you have ME/CFS like me, or many other chronic illnesses, you’ve probably noticed constantly-shifting symptoms of illness and infection, like chest congestion, sore throat, stuffy nose, sinusitis, candida issues, and more. Often doctors can’t do much to help and you’re left to pick yourself up on your own.
For people with ME/CFS, minor infections and inflammation can easily lead to profound crashes, with their even more disabling symptoms like difficulty moving, breathing, eating, drinking, and speaking.
I thought I’d share one of the things that helps me avoid crashes from infection symptoms and immune dysfunction. I struggle personally with chest congestion and sinusitis, especially when I’m tired or have overdone it, and this remedy is very helpful. Two or three cups a day puts me back on track and often limits infection-related crashes to one day rather than an endless string of days.
Super Ginger-Lime Immune Tonic
What you’ll need:
Optional: Your favorite immune-boosting and/or antifungal tea (Ex: Pau d’Arco, Echinacea, etc.)
1. Thinly slice plenty of ginger (about 1/3 of a medium hand of ginger) and put in a mug. You can reuse this ginger all day and it keeps working for 2-3 cups of tea.
2. Add a teabag with good quality ginger tea, and your additional immune-boosting tea if you’re using it.
3. Fill with boiling water and cover 10 minutes.
4. Squeeze a lime slice into the tea and drink while hot. (Don’t put it in with the water— the boiling water will destroy beneficial compounds in the lime.)
This is a strong tea and has powerful effects! Drink 3x a day for best results.
*If you prefer lemon, go for it. I prefer lime because it’s seedless (meaning no seeds in the tea!) and I feel it works a bit better for me.
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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.
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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Sep 18, 2018 | Posted by Zeraph
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.
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Sep 17, 2018 | Posted by Zeraph
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:
Here’s some more information on each of these points.
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.
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.
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:
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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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.
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:
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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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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