Chronic illnesses like POTS and ME are not caused or cured by psychological means. However, our mental state impacts our physical state to a degree. Consider the placebo effect and the fact that researchers must account for this phenomenon. Our minds are powerful tools. I will teach you some mind tricks that I learned at the Mayo Clinic, and through experience, to harness that power.

Sick behaviors (What not to do)

This list is the “what not to do”. Sick behaviors teach our brain that we are sick and then in a feedback loop tells the body “feel and act sick”. These behaviors compound already existing problems according to the Mayo Clinic.

Disclaimer: Not all of these may apply to your situation. Sometimes these “behaviors” are not a choice. For example, I think of people with severe ME. They do not have the choice to get dressed and get out of bed as they at times cannot move independently. So, as you read these, filter them through the lens of your situation.

Here are examples of sick behaviors:

• Talking about symptoms. This is hard to not do when you are in the phase of trying to figure out what is going on. Also, people are probably concerned and ask you often. Mayo told us to be “plan-oriented” rather than “symptom-oriented”. So, when we discuss our illness, we are focused on what we are doing about it rather than the symptoms. Practically, how this looks is when I talk about POTS/ME to my husband, I don’t whine about symptoms (usually). Instead, we discuss the treatments I’m doing or he will ask how my workout went, etc.
• Keeping a log of symptoms. It can focus the brain on symptoms. However, if your doctor encourages this, then of course ignore this suggestion.
• Not “getting ready”. If you wear PJs all day and “look sick”, when you look in the mirror your brain will register “you are sick” and perpetuate those signals. By getting ready, you signal to your brain a different narrative. Keep in mind that “getting ready” can have a wide range. It means doing whatever you have to do to feel presentable.
• Having a lot of visual cues of illness around the house. Other than my eye exercise markers taped on the wall (it would be a pain to take down and tape back up each day), I keep everything illness-related hidden away.
• Measuring health metrics. This includes blood pressure, heart rate, temperature, etc. Unless a doctor has advised you to do this, or you require it to stay safe, I would recommend skipping it. It is a constant reminder that your body is messed up.
• Staying in bed. Even moving to the couch makes a difference to your brain. Staying in bed and not sleeping also negatively impacts nighttime sleep quality. It teaches your brain that bed is not just for sleep (which we don’t want).

Positive mind tricks

Disclaimer: As I mentioned with the sick behaviors, not all of these may be applicable to your situation.

• Meditation in general – I wrote a post about Meditation you can find here. Lately, I have been using these podcasts to meditate: Meditation Minis, Mindful15, and Mindful in Minutes.
• Imagery. I have done a few meditations imagining healing in the body via chakras. I’m not necessarily “sold” on the concept of chakras, but I still enjoyed the imagery and it felt positive. I would like to try imagery meditations more regularly.
• Have as normal of a routine as possible. Your brain is smart. It knows when you’re being normal or not. Sticking to as much “normalcy” as possible sends your brain the correct message. Don’t be dismayed by this, it doesn’t mean that your life has to resemble what it did before you got sick. It just means that you change small things to make it closer to normal.
• Socialization and laughing. Our brains grow and improve with these activities. It also sends positive signals to the brain which will then feedback loop those signals back to the body.
• Actively working on at least one new healing activity/modality/medication. This helps me to always feel like I am moving forward, even if I am just placebo-ing myself.
• Generally healthy habits. You know if you’ve been “good” or not and this confidence boosts mood and overall well-being. You know those days where you just do everything right: you do your yoga, eat your salads, and feel like a walking beacon of health? That healthy swagger is a powerful thing.

Resources for mental health

Although the purpose of this post was to teach you how to use your brain to “trick” your body, I would like to briefly address mental health. Dealing with chronic illness is difficult. If you need help coping, I would recommend seeing a mental health professional.

If seeing a mental healthcare professional seems too daunting of a task, the good news is that mental healthcare can be very accessible to those of us with chronic illness thanks to telemedicine. Here are a few options:

• Better Help Counseling– I hear their ads often on podcasts. It seems like a noteworthy option.
• Dysautonomic Clinic Counseling Services– My neurologist Dr. Blitshteyn owns Dysautonomia Clinic. It is based out of New York, but provides telemedicine services. She has a counselor on staff, Dr. Danielle Williams, that specializes in coping with chronic illness among other things. She actually has POTS, EDS, and other chronic illnesses herself. To set up a remote appointment, click “Request a Consult” button. You can either e-mail them or send a message to request an appointment. Their phone number is listed, but is only used for the actual appointments.
• TalkSpace– This seems like another legitimate and professional option.

If you prefer to work on things on your own, the Mind Over Mood book is a fantastic resource. The Mayo Clinic recommended this book during the Chronic Fatigue and Fibromyalgia Clinic. I figured, why not, let’s do this thing. Then, I opened the book and saw the mounds of worksheets I was like:

I kept an open mind and proceeded through it one chapter at a time. Honestly, I can’t think of any person who wouldn’t benefit from applying the principles in this book, it is fantastic.

Have you implemented any of the mind tricks I discussed above? Do you have any other tricks to share?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

My neurologist shared with me this pro-tip for POTS that I wanted to pass along to you fellow Potsies: Elevate the head of your bed to a 10-15 degree angle. According to a survey, a little over 50% of respondents had some degree of improvement by raising the head of their bed. So, this may be worth your consideration if you have POTS or another form of Dysautonomia.

Why does this help?

At night, when we lie flat, our body releases an increased amount of a hormone called Atrial Natruiretic Peptide (ANP). ANP signals the kidneys to reabsorb less sodium. As sodium leaves the body, water follows due to osmosis. Less water in our body means less blood volume. Less blood volume means lower blood pressure and a potential exacerbation of orthostatic intolerance. To explain it alternatively, when we are upright, less ANP is secreted, so less urine is formed, and that fluid is retained in the body. If the head of the bed is elevated, our body registers that as “upright” and will release less ANP and maintain a higher fluid and blood volume. Pretty cool hack, isn’t it?

In addition to fluid retention benefits, Dysautonomia International states that elevating the head of the bead also helps to recondition the body to orthostatic stress and alleviate gastric motility issues. Working on POTS recovery can be time consuming, so to be able to reap orthostatic tolerance benefits while you sleep is huge.

How to do it

My neurologist instructed me to stack a board, books, bricks, or something hard like that under the head-end of the mattress to elevate it to a 10-15 degree angle. The entire bed must be on an angle. I wonder if it would work better to do it under the box spring (if you have one) as it would keep the angle more intact since it is harder than the mattress. You could also use risers to elevate the head side of the bed. With all of these methods, make sure everything is secure so that you stay safe. I have not tried this, so I cannot say which of these methods work best.

Why I do not do elevate the head of my bed

Other interventions to expand fluid volume have not had a significant impact on how I feel. I’m concerned that I would potentially mess up my quality of sleep, but not reap much benefit. However, if I had more severe orthostatic intolerance and/or interventions like salt, increased water intake, and Florinef were more useful, I would try elevating the head of my bed without any hesitation. Or, if I had gastric motility/G.E.R.D, I would also consider trying this. Although I doubt this method’s usefulness in my circumstances, that does not mean that it couldn’t be useful for you.

Does anyone elevate the head of their bed for POTS? How does it work for you?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

Working within my energy envelope has been one of the most beneficial things I have done. It is doing daily activities in a way that does not cross the energy threshold and cause a crash. A crash is when we go beyond that threshold, or envelope, and pay for it with an extreme worsening of symptoms.

Crashes look different for each person. For some, they may not be able to get out of bed for months. When I crash, I get really “out of it” cognitively, achy (like fever aches sensation), a sore throat, a low-grade fever, worsening of orthostatic intolerance, and feel like all the blood has been drained from my body. It’s a blasty blast. My crashes last anywhere from a few hours to a few days.

Each crash causes a set back and hinders healing. So, by preventing these crashes, we can sometimes see overall improvement or at least be less miserable. Working within the energy envelope or “pacing” is not a treatment. It is an energy management skill. In this post, I will discuss the tips I learned at Mayo and that I have discovered along the way regarding pacing.

Note- Throughout this post I use the phrases energy threshold, energy envelope, and pacing interchangeably.

This is my experience as someone with a mild-ish perspective of ME. Out of respect to those with severe and complicated cases, it is important to note that this post and discussion may not apply to everyone.

Benefits of staying within the energy envelope

Prior to using this skill of working within the energy envelope, I used to do things based more on how I felt day-to-day. If I had a good day, I would do a ton and end up crashing. If I had a bad day, I would lay down a lot and end up getting deconditioned. It was a bad cycle. My energy levels and how I felt were all over the place and very unpredictable. Here are the benefits I have experienced since switching to pacing:

• Less severe symptoms. By crashing less, I experience the severe symptoms far less often.
• More predictable energy. This makes it easier to make plans, which is invaluable to trying to have a more normal life.
• Overall improvement. This is just conjecture, but I think it is possible that some of my overall improvement is due to using pacing. It would make sense that my body would heal more efficiently under these conditions vs. having the energy stores tapped out and in distress (like during a crash).

Identifying your envelope/threshold

Basically, you create a schedule, stick to it, and see how you do. It’s best to start with a low, attainable goal so that you do not get frustrated. If you crash, dial it back by 30 minutes to 1 hour of activity in the day and try again when you are back to baseline.

This process may take some trial and error. You may crash numerous times trying to find that “sweet spot”. It’s okay, that is to be expected. It will be worth it in the long-run.

If you are feeling like, “I don’t even know where to start”, here are some steps to guide you in the process of creating a plan.

• Think of a day where you did not crash or didn’t crash too bad.
• Write out a full day blank schedule in half-hour increments.
• Fill in the blanks of what you did based on that day you thought of. It doesn’t have to be perfect. A rough idea is fine.
• Look at it and consider how you can improve it by doing things such as spacing out heavier tasks to make the day look more steady. If you had a small crash from this example day, you could consider eliminating some of the activity in the schedule.
• Rewrite out your ideal schedule after editing it.
• Voila, you have a plan.

If you are struggling to come up with a plan, feel free to get in touch with me at: dropitlikeitspotsblog@gmail.com. I would be happy to help you navigate this skill.

How to get the most energy “bang for your buck”

• When I do healing activities (ex. deep breathing, exercises, etc.), I try to do them in time-efficient ways so that they do not interfere with my regular life too much. I meditate while I do a warm eye compress in the morning. When I shower, I do acupressure for the vagus nerve and end the shower with cold water for vagus nerve stimulation. When I was doing 30 minutes of physical therapy each day for dizziness, I would walk pretty quick with the head movements to get some cardio in simultaneously. I deep breathe while I do other activities. You get the point, you can blend these things into your day so that they aren’t an energy and time suck.
• Do necessary tasks in energy-conserving ways. For example, I will sometimes sit when I prepare food or when I do my hair.
• Streamline your “getting ready” routine. You don’t want to waste all your precious energy on this. Prioritize what is impactful. For example, I like makeup. So, I still wear it. But, gone are the days of blending 14 different eyeshadow colors to create a subtly bomb look that is imperceptible to the naked eye.

Tips to avoid crashes

• Add one new activity at a time and allow time to see how it works out for you. You do not want to overwhelm your brain or your body. Give yourself time to see how it fits into the natural framework of your life. This includes healing activities. Allow yourself to become efficient before you move on to the next thing.
• Within reason, follow your plan as opposed to following how you feel. This goes for when you feel good too. It’s easy to go crazy and do a ton when you’re at a higher point, but it’s more beneficial to stay steady day to day.
• Space out heavier tasks.
• Alternate rest and activity times frequently. I do better with more of a couple hours “on”/ 45 minutes to an hour “off” schedule rather than going balls to the wall for several hours/”off” for a few hours.
• If you get acutely sick, pull back a little. Otherwise, it will take longer to recover. I just read this from my Mayo notes and realize I do NOT do this. I should be better about this.

• Remember that mental activity counts. It’s sad and funny all at the same time. I can actually crash from expending too much mental energy. Our brains utilize a massive amount of energy to function, so this makes sense. When I make a grocery list/meal plan, I regard that as a physical activity because of the mental energy that it requires. I know that sounds super lame if you are a healthy person, but it’s an intense process for me.

This is my brain while:

• Meal planning whole food meals for myself.
• Meal planning separate meals for the rest of the family.
• Trying to come up with stealthily healthy options for my husband and older son.
• Making sure all ingredients have never been in the presence of a nut for the sake of my allergic son.
• Making sure all ingredients have never been in the presence of a nut for my sake because I’m still traumatized from giving my son an epi pen injection three years ago.
• All the meanwhile trying to wrap my head around the fact that Mount Everest isn’t the tallest mountain. Apparently some mountain in Hawaii is because they measure it from its origin below sea level. Seems like cheating to me. My older son is a walking encyclopedia and shatters my worldview like that daily.

Increasing activity

Your body may get to the point where you are ready to take on more activity. Do this slowly. At Mayo, they suggested that all increases should happen around 1%, otherwise the brain will revolt and cause your body to revolt.

To read more about pacing, check out my post on Pacing Tips.

Does anyone else practice pacing or working within your energy envelope? How are you doing with it?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

This may seem like a super random topic. However, sensitive skin and/or inflammatory skin diseases occur frequently along with chronic illnesses and autoimmune diseases. An overeager immune system can attack the skin barrier and make it more susceptible to dryness, irritation, and skin conditions such as eczema, acne, and rosacea. I will share skincare tips I have learned along the way that work for my sensitive skin.

Disclaimer: I am not a dermatologist, esthetician, or skincare specialist. These are tips and products that work for me. Everyone is different, so these may not apply to you. I recommend that you see a dermatologist for skin-related concerns.

Face skincare tips

• Choose fragrance-free products. This is my number one tip for everything. It is a common culprit of irritation. This includes essential oils, they are also very sensitizing.
• Put moisturizer on when skin is damp, it helps lock in the moisture.
• A humidifier can be useful. I don’t use one anymore because two in row grew mold despite daily cleaning. If you can use one successfully, then by all means do it.
• Say no to scrubs, brushes, etc. They irritate more than anything.
• Pick the most gentle cleanser you can find that still gets the job done
• Less is more when you have sensitive skin. Skip the fancy products. My skin gets worse if I try and get extra with a serum, treatment, etc.
• If you have acne, don’t nuke your face with over-the-counter products targeted to acne. Most likely, you would be better served to use a gentle, basic cleanser and moisturizer and then see a dermatologist for a prescription (or you could try Differin now that they offer that over-the-counter). When I had significant acne, Retin A Micro and Plexion were my jam. Once I had my kiddos (hormones change) and switched to gentle, fragrance-free products, I haven’t needed any prescriptions.

Body skincare tips

• Put lotion on after every time you wash your hands
• Pick a gentle, fragrance-free hand soap
• If your hands get cracked/bleed, slather on a thick coating of oil and lotion and sleep with socks on your hands to lock the moisture in
• Pick gentle, fragrance-free bodywash/soap
• Try kids’ sunscreen, they tend to have less irritating ingredients
• Use a free and clear laundry detergent and skip fabric softeners

Eczema tips

My eczema is well-controlled for the most part now that I use gentle, fragrance-free products. When weather changes or in the winter, I will occasionally get a flare up. For mild flare ups, Aquaphor twice a day does the trick for me.

Several years ago, when I was in massage therapy school, I had a major eczema flare all over both of my arms. No amount of Aquaphor or hydrocortisone could touch it. I figured out by deduction that it was the massage cream we were provided with at school. Once I switched to an alternative product, it cleared up without any other interventions. This demonstrates that identifying triggers is an important part of managing eczema.

Hair/scalp tips

• Choose something that is fragrance-free- this is actually quite hard to find in hair products.
• Minimize the use of styling products including dry shampoo, they increase the chances of scalp irritation.

Products I like:

Facial cleansers

• Paula’s Choice Gentle Touch Makeup Remover (eye makeup remover)
• La Roche Posay Toleraine Hydrating Cleanser
• Paula’s Choice Skin Balancing Oil Reducing Cleanser

Facial moisturizers

• Paula’s Choice Clear Skin Hydrator
• Etude House Soon Jung 2x Barrier Cream– This is the MVP. If your skin is dry or irritated, give this a try.
• Mary Kay Timewise Firming Eye Cream
• Lansinoh Lanolin– I use it as a lip balm

Hand/Body soap

• Dove Sensitive Skin bar soap– I use this as shaving gel too
• Seventh Generation Free and Clear Hand Soap

Hand/Body moisturizers

• Aquaphor– Good for eczema
• Any oil- I am currently using grapeseed oil. I also like jojoba oil
• Up and Up Daily Moisturizing Lotion (knockoff of an Aveeno product)

Sunscreen

• Paula’s Choice Super Light Wrinkle Defense SPF 30– Daily use on face
• La Roche Posay Anthelios Clear Skin– Use on my face while swimming
• For the body, I use whatever sunscreen I bought for the boys. Currently, we have a bottle of this Coppertone sunscreen.

Hair

• Paula’s Choice All Over Hair and Body Wash
• Paula’s Choice Conditioner
• Neutrogena T-Sal– I use this once or twice a week for an itchy scalp
• Jojoba or grapeseed oil– Adds shine

Random

• Paula’s Choice 2% BHA Gel– I use this sporadically if a pimple leaves a dark spot
• Up and Up Free and Clear Laundry Detergent– Fragranced laundry detergent makes my skin angry and flares up eczema. If you have irritated skin, I definitely recommend switching to free and clear laundry detergent of any brand.

Great resources on skin

• Dr. Dray
• Dr. Sam Bunting

They are both dermatologists that share great tips and advice on YouTube.

What tips do you have for sensitive skin?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.

It is natural for our bodies to release stress hormones when we are exposed to stressful stimuli. Unfortunately, our bodies cannot distinguish between real stimuli and artificial stimuli from media. An overabundance of stress hormones can exacerbate many diseases, in particular hyperadrenergic conditions and central sensitization conditions (certain forms of POTS, ME, and fibromyalgia). We can unknowingly worsen these conditions simply from exposing ourselves to certain types of media.

News

The bomb dot com for news is called The Skimm. It is sent via a daily email and does a good job of keeping you informed in a well-rounded way while leaving out the tragic and crime-related stories. Also, whoever writes The Skimm is hilarious.

I am fascinated by politics, so I also scope out Reuters and Politico. I recently switched to those from CNN, which is notorious for having tragic/garbage headlines and being biased. I also enjoy The Flip Side for politics. Most days, it sends an email about a particular recent political event, compiling quotes from liberal sources and conservative sources.

Update- The way I stay in the loop without overdoing it nowadays is the Tangle newsletter or podcast. It’s awesome and I can’t recommend it enough. It is written by an independent journalist, Isaac Saul. Tangle recaps a topic and then covers views from the right, from the left, and then includes Isaac’s take. It also includes some other things like quick hits to stay up-to-date on current news.

Television

The adrenaline being released from television can be more insidious than you would think. I recently watched the documentary The Dawn Wall about rock climbers climbing the Dawn Wall rock face at Yosemite. I felt normal and relaxed, but when I looked down I realized my hands were soaked with sweat. Yikes! I did not sense the effect it was having on me, and yet it was having a major physiological effect. By the way, I don’t think I’ve ever felt like more of a wimp than in that moment. Here’s these guys who are nonchalantly sleeping in tents dangling from a cliff, meanwhile I got sweaty hands from simply watching it.

When my husband and I watch TV, we pick something light and funny. I would recommend shows like: Parks and Recreation, The Office, New Girl, Schitt’s Creek, etc. (all of these are on Netflix).

We also like Jeopardy. It is light and does an excellent job of stimulating the brain in a positive way. I have noticed myself getting better at recalling and making connections to figure out the answers. This type of brain stimulation improves brain fog.

Be careful with medical shows, especially ones about medical mysteries or diagnosis. Watching certain medical shows can either make us hyperfocus on our own issues, or it can frustrate us because we don’t have that miracle cure portrayed on the show. There are some exceptions, of course. Here is an example- Royals Pains was fine, but House M.D. is a no-no for me. Each person will be different.

Books

Books can create suspense as well, so just be aware of how they affect you. I dig nonfiction books and biographies. Those are pretty safe bets. There are plenty of lighter fiction novels as well.

As a random side note, I recently read Message in a Bottle by Nicholas Sparks. Mr. Sparks, how dare you.

Music

I don’t have any scientific basis for this. I’m hypothesizing that as athletes get “pumped up” from music before competition, there is the chance that music encourages the release of adrenaline.

My music taste is basically Tom Haverford’s from Parks and Rec: “bangers” and 90’s R&B. I listen to music in short, random spurts and that has been fine. In fact, it can be positively energizing at times. If I played music often, I would imagine that it could become problematic.

Online Support Groups

Online support groups have many positives. You can connect with people which can be especially helpful if you are housebound. They are also helpful if you have a question.

There’s also a flip side to this. There is the potential of becoming inundated with information and discussion about illness. That is not healthy for anyone. I recommend not having them on a social media feed, but rather going to them if and when you choose to do so.

Google deep-diving

It is tempting to want to research the crap out of your illness and solve your dilemma. That is natural and sometimes it can even be fruitful. However, it can also make you become far too focused on your disease. Just check in with yourself when you engage in research to make sure it’s truly doing you a benefit. Also, keep in mind that there is a lot of absolutely asinine information out there.

Have you noticed media impacting your health? How so?

Side Note- Coronavirus

Here are a few resources pertaining to the Coronavirus:

• To learn more about the Coronavirus in general and the recommendations you may visit the CDC’s website.
• My neurologist, Dr. Svetlana Blitshteyn, wrote an article on the Coronavirus and Dysautonomia.
• Dysautonomia International Coronavirus Page
• This article from the ME Association in the UK discusses ME/CFS and COVID-19.
• The MEAction Network has a lot of resources on their page dedicated to the Coronavirus
• Most state-level governments are also issuing their own recommendations. Be on the lookout through local news outlets.

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.