Dysautonomia is getting some press. Here it is in USA Today.
POTS Workout Tips
Question 1: I’m new to working out with POTS! What are some exercises to start? Just getting from bed to the next room is hard now.
Hi there! Good news: working out can be HELLA LAZY! Here are some of my favorite floor-bound exercises based on the goal.
Goal: Muscle Tone
Exercise 1: Doggy Glutes
Begin on your hands and knees. Keeping your left knee on the ground, raise your right bent knee so that your thigh makes a straight line from your hip to your knee. Engage your glute. Lower your knee back down to the starting position. For an added challenge, don’t rest it when it gets back down. Repeat 10 times, then on the other leg.
Exercise 2: Doggy Glutes 2- Straight Leg
Begin on your hands and knees. Keeping your left knee on the ground, raise your right bent knee so that your thigh makes a straight line from your hip to your knee. Engage your glute. Now, straighten your leg but keep your foot flexed. Keeping your abs engaged, lower your leg just an inch or two, feeling the glute doing all the work. Raise it back up. Repeat this tiny motion 10-20 times. Repeat on the other side.
Goal: Slight Cardio
Exercise 1: Doggy Limb Raises
Begin on your hands and knees. Shift your weight to your right arm. Raise your left arm straight in front of you until it is level with your ear. Slowly bring it back to the starting position. Repeat with your left arm, then your left arms and legs.
Bonus Level: Try doing this with your right arm and left leg at the same time, then the left arm and right leg at the same time
Question 2: I have mastered medium level floor workouts, but can’t seem to work up to running! What do you recommend?
Disclaimer: Everyone’s POTS is different, and everyone’s body is different. This is just what worked for me, but I am happy to share it!
I started on the recumbent bicycle, level 1. I worked up to 20 minutes, then worked up to level 4 or so. I decided I felt strong enough to try the stationary bike. I worked up to 20 minutes on this (level 1 and first, then up to 4), then would start the following on different days.
Workout 1: 10 min recumbent bike, 5 min elliptical, 5 min recumbent bike (did this for 2-4 weeks)
Workout 2: 10 min recumbent bike, 10 min elliptical (did this for 2-4 weeks)
Workout 3: 5 min recumbent bike, 15 min elliptical (you could start jogging here, I get shin splints so at this point I could only elliptical)
Workout 4: 10 min recumbent bike, 10 min walk/ jog
Workout 5: 5 min recumbent bike, 15 min walk/ jog
Workout 6: 20 min walk/ jog
NOTE: this wasn’t always linear! Some days I felt horrible and stepped back to workout 1 after I had been on workout 5. And that is OK. This still happens- some days I can run 4 miles, others I can’t even get out of bed. Accept where you’re at. You’ve got this.
Chronic Illness & Self Doubts
A beautiful illustration of chronic illness, doubting your own experience, and how to overcome. Text pasted below, original article linked below as well. Original author Stephanie Harper.
Am I Sick or Just Lazy? And Other Chronic Illness Doubts I Have
I wonder whether some things stem from this illness — or are actually just my personality.
Health and wellness touch each of us differently. This is one person’s story.
It’s been 10 years since a slew of still unexplained symptoms invaded my life. It’s been 4 1/2 years since I woke up with a headache that hasn’t ever gone away.
In recent months, I’ve become increasingly sick — all of my symptoms attacking at once and new symptoms appearing what seems like daily sometimes.
For now, my doctors have settled on new daily persistent headache and ME/CFS as tentative diagnoses. My team of doctors are still running tests. We’re both still searching for answers.
At 29 years old, I have spent almost a third of my life chronically ill.
I can’t remember what it was like before — to not feel some combination of these symptoms on any given day.
I live in a state that’s equal parts cautious optimism and hopelessness.
Optimism that answers are still out there, and a sense of acceptance that, for now, this is what I have to work with and I will do my best to make it work.
And yet, even after all these years of living and coping with chronic illness, sometimes I can’t help but let the strong fingers of self-doubt reach in and take hold of me.
1. Am I sick or just lazy?
When you’re sick all the time, it’s difficult to get things done. Sometimes, it takes all of my energy just to get through the day — to do the bare minimum — like get out of bed and take a shower, do laundry, or put the dishes away.
Sometimes, I can’t even do that.
My fatigue has had a profound effect on my sense of value as a productive member of my household and society.
I’ve always defined myself by the writing I put out into the world. When my writing slows, or comes to a halt, it makes me question everything.
Sometimes, I worry that I’m just straight-up lazy.
Writer Esme Weijan Wang put it best in her article for Elle, writing, “My deep fear is that I’m secretly slothful and am using chronic illness to disguise the sick rot of laziness within myself.”
I feel this all the time. Because if I really wanted to work, wouldn’t I just make myself do it? I would just try harder and find a way. Right?
When any kind of physical activity, even just standing for long periods of time, causes my symptoms to spike uncontrollably, it’s hard to hear these requests that lack empathy.
Deep down, I know that I’m not lazy. I know that I do as much as I can — what my body allows me to do — and that my whole life is a balancing act of trying to be productive, but not overdo it and pay with exacerbated symptoms later. I’m an expert tightrope walker.
I also know that it’s hard for people who don’t have these same limited energy stores to know what it’s like for me. So, I have to have grace for myself, and for them as well.
2. Is it all in my head?
The hardest thing about a mystery illness is that I find myself doubting whether or not it’s real. I know the symptoms I’m experiencing are real. I know how my illness affects my daily life.
At the end of the day, I have to believe in myself and what I’m experiencing.
But when nobody can tell me exactly what’s wrong with me, it’s hard not to question if there’s a difference between my reality and actual reality. It doesn’t help that I don’t “look sick.” It makes it hard for people — even doctors, sometimes — to accept the severity of my illness.
There are no easy answers to my symptoms, but that doesn’t make my chronic illness any less serious or life-altering.
Clinical psychologist Elvira Aletta shared with PsychCentral that she tells her patients that they just need to trust themselves. She writes: “You are not crazy. Physicians have referred many people to me before they had a diagnosis, even doctors who don’t know what else to do for their patients. ALL of them eventually received a medical diagnosis. That’s right. All of them.”
At the end of the day, I have to believe in myself and what I’m experiencing.
3. Are people tired of me?
Sometimes I wonder if the people in my life — those who try so hard to love and support me through all of this — ever just get tired of me.
Heck, I get tired of all of this. They have to be.
I haven’t been as reliable as I was before my illness. I flake out and turn down opportunities to spend time with the people I love, because sometimes I just can’t handle it. That unreliability has to get old for them, too.
Being in relationships with other people is hard work no matter how healthy you are. But the benefits always outweigh the frustrations.
Chronic pain therapists Patti Koblewski and Larry Lynch explained in a blog post: “We need to be connected to others — don’t try to fight your pain alone.”
I need to trust that the people around me, who I know love and support me, are in it for the long haul. I need them to be.
4. Should I be doing more to fix it?
I’m not a doctor. So, I’ve accepted that I’m simply not capable of wholly fixing myself without the help and expertise of others.
Still, when I wait months between appointments and am still no closer to any kind of formal diagnosis, I wonder if I’m doing enough to get well.
On the one hand, I think I have to accept that there really is only so much I can do. I can try to live a healthy lifestyle and do what I can to work with my symptoms to have a full life.
I also need to trust that the doctors and medical professionals I work with do have my best interest at heart and that we can continue to work together to figure out exactly what’s going on inside my body.
On the other hand, I have to continue to advocate for myself and my health in a complex and frustrating healthcare system.
I take an active role in my health by planning goals for doctor’s visits, practicing self-care, like writing, and protecting my mental health by showing myself self-compassion.
5. Am I enough?
This is perhaps the most difficult question I wrestle with.
Is this sick version of me — this person I never planned to be — enough?
Do I matter? Is there meaning in my life when it’s not the life I wanted or planned for myself?
These aren’t easy questions to answer. But I think I have to start with a change in perspective.
My illness has affected many aspects of my life but it hasn’t made me any less “me.”
In their post, Koblewski and Lynch suggest that it’s okay to “Grieve the loss of your former self; accept that some things have changed and embrace the ability to create a new vision for your future.”
It’s true. I’m not who I was 5 or 10 years ago. And I’m not who I thought I was going to be today.
But I’m still here, living every day, learning and growing, loving those around me.
I have to stop thinking that my value is based solely on what I can or cannot do, and realize that my value is inherent in just being who I am and who I continue to strive to be.
My illness has affected many aspects of my life but it hasn’t made me any less “me.”
It’s time I start realizing that being me is actually the greatest gift I have.
Stephanie Harper is a writer of fiction, nonfiction, and poetry currently living with chronic illness. She loves traveling, adding to her large book collection, and dog-sitting. She currently lives in Colorado. See more of her writing her atwww.stephanie-harper.com.
Living with POTS
“Oh, she’s not feeling great tonight.”
“Oh, is she sick?”
“Nah, she just has a thing.”
“Hey, can I have about twelve packets of salt?” — me, at every restaurant
If you’ve been around me in the past year for any extended period of time, you probably have noticed some or all of the following: 1. I eat a ton of salt and drink a lot of water 2. I can be super spacey sometimes 3. I get a lot of migranes 4. I sometimes have to cancel plans because I feel icky (tired, dizzy, migranes, confused, any combination of these) 5. I make lots of jokes about 1-4.
However, I’m willing to bet most of you didn’t know any of this, because it’s easy to hide and I don’t talk about it a lot. I’m someone who loves to stay busy. I’m always on the go. I love hanging out with friends and meeting new people. It’s only really noticeable if you spend a whole day with me and see me guzzle water/ throw back salt, or if we’re close enough to hang regularly and I’ve had to cancel once or twice. Well, it’s time to talk about it. It’s a part of my life, but it’s not my life.
This time last year I was diagnosed with POTS—Postural Orthostatic Tachycardia Syndrome. What do all these words mean? Simply put, my autonomic nervous system doesn’t function properly so my blood vessels don’t constrict and blood doesn’t get back up to my head and my heart. This means that my heart has to beat faster to compensate to try to push the blood back up to where it’s supposed to be, rather than pooling in my extremeties (hands and feet, gravity pulls it down and my body can’t compensate). This is why I’m spacey sometimes- POTS takes blood from my brain, and without adequate blood up there, I’m a space cadet. (This is difficult for someone like me who prides herself on being intelligent and competent., so this has been a big learning experience). This also explains the headaches (not enough blood up there) and why I feel bad after exercising (I’m also the girl who ran for an hour every day freshman year of college, so this is a tough one. I love being active). The postural part means that if I’m laying down, my symptoms tend to subside (because laying down counteracts gravity).
What’s the treatment? There’s no cure. But there are a few things I can do. Science.
- Drink a ton of water and take salt. Drinking water increases blood volume, which helps put pressure on my blood vessels to constrict. Eating salt (I salt my food and also just throw back handfuls of salt at a time. Travel with me- I carry a Ziploc baggy of it and have gotten some great looks from people when they see me take it out) helps my body better absorb the extra water. Once I took out my little baggy of salt at Disneyland (Katie can vouch for this), poured about a teaspoon of salt into my hand, threw it back and washed it down with water like a champ while three teenagers in front of me in line for Haunted Mansion stared at me in horror. Yo, this is the new drug. Want some, kids? (JK JK drugs are bad. But not salt). I also once did it at a coffee shop in front of the sheriff who had just walked in. He didn’t raise an eyebrow.
- Sleep more!
- Watch cardio. Stressing my heart too much makes me feel worse, but light exercise is actually a treatment, so there’s a fine balance.
How do I feel when I’m having a flare up? Tired, confused, headachey, spacey, sometimes anxious, heavy limbs, tingling extremities, or any combination of these. I normally feel the worst after exercising. The catch 22? I feel icky and have to lay down/ am bedridden for a few hours or the rest of the day. It mimics depression (and forces me to bail on social situations/ bail on friends), so it’s hard not to get down about it during a flare-up.
How do I feel otherwise? Pretty frickin’ normal & happy! My same old self. Most days I forget I have it, until I have a bad POTS day.
So what does this all mean? I can still live a normal, full life. However, it does mean that some evenings I’ll cancel my plans to go out because my gym workout knocked me out. Or some weekends I’ll have to bail on friends to rest my migraine. There’s definite FOMO that goes along with all of this- I don’t want to miss out. But I’ve also learned that I have to take care of myself.
What do I need? The support and understanding of my community. I’ve never experienced anything but this, but now that I’m meeting more and more new people I feel the need to let people know that this is a part of my life. My flakiness isn’t me making excuses about not feeling great to cancel plans—I have this thing, and that’s just life. I’ve learned that I need to love myself and take care of myself first, and the rest will work itself out. Laying down party anyone?
Peace and love, y’all ❤
by Shabnam Ferdowsi
You can’t tell, but I’m legally blind. I started noticing my vision problems when I was 11. Nine doctors and six years later, in my last semester of high school, we figured it out. I have a genetic condition called Macular Dystrophy that causes extreme near sightedness and central vision loss. In simple terms, I can’t see much detail more than a few feet away from my eyes and I can’t focus on any one point, among other minor symptoms (like my deep loathing for fluorescent lights for one). There is no cure yet, and glasses don’t help.
So I just deal.
I’m going on ten years since my first optometrist appointment in 6th grade, so I’ve become pretty good at dealing. I enlarge the font on my phone, turn on the zoom functions on all my electronics (thank you Apple!), sit in the first chair of the classroom, and tell as many people as I can.
I used to be embarrassed. When people say “hey” from across the quad or as they bike by, I can’t tell who it is or if they’re even talking to me. So I ignore it, and it used to eat at my self-esteem like nothing else. Since my central vision is low, I can’t focus on any one point so when I’m talking to people, I can’t physically make my eyes look them. So I just look in that general direction, which used to look terribly off when I was just getting used to this whole thing. I’d be talking to a friend who was standing five feet away and she’d constantly turn around as if to see what I was looking at, and I’d just want to tell her, “I’m looking at you, damnit!” I hated going out alone anywhere because I couldn’t read signs or menus. Of course, I definitely would not ask for help. Help is for the weak, I thought.
But the thing is, my eyes are weak. There is nothing I can do about it. I’m not normal and I just need to own that. So here I am.
I’m a legally blind photographer who loves going to concerts, making videos and meeting people.
I auto-focus, so that answers any photography questions you may have. I cannot manually focus, and that causes all the problems videography may have. I used to go through whole shoots thinking I was focusing it all right, but then I’d throw it onto a screen and HELL, non of it would be focused. It’s discouraging, and I used to wonder all the time if I should quit. But screw quitting. I’ll put it on a tripod. I’ll make friends who shoot, start a team so I can direct and they can focus. I’m making it work for now because I’m not taking no for an answer.
Yes, I’m technically handicapped and thus can’t get a regular license. Yes, it royally sucks living in LA. 90% of the stress I ever have comes from late busses. The other 10% comes from grumpy bus drivers. I hate this city for this reason. I’m not planning on having a typical nine-to-five job. I’m going to be moving, shooting and meeting people all over. I’ve been wanting to shoot in Venice Beach for over two years, but who wants to spend 2 hours on a bus there and another 2 hours back? No, thanks. So I’m trying to get out as soon as I can.
But then again, I love this city because it’s home. I love it because it’s diverse. I love it because my camera loves golden hours and palm trees. I love it because I’m building a network of people who care for and are passionate about the same things I am.
I make it a point to make sure everyone I meet knows what my situation is. I’ve decided that asking for help is not giving in, but rather accepting this life to be able to live it to the fullest (if I may be cliché). So now I’m going to start asking for help, because I’m sick and tired of getting stuck (physically and not). And if people think it’s too weird of me to ask them to read the entire menu out loud, or drive me back from the concert since buses don’t run past midnight, or to simply tell me who’s waving at me form across the room, then I’m not sure if we’re real friends.
Salt/ Sugar Sisters
It all started sitting on her floor. She had a needle in her arm, injecting insulin. I held a pill box with 8 pills in it for the day. I tossed the pills into my mouth, washed them down with water, and got up to continue my morning routine. She laughed, “we’re just a bunch of druggies”. I’d never noticed before, because this was just my normal. But it’s true.
Chelsea has type 1 diabetes. I have POTS. We are both dependent upon medication and lifestyle changes to live “normal” lives. But we both live “normal” lives (if you can even call any life normal). Chelsea is dependent upon insulin and glucose. I’m dependent upon a variety of medications, extra water, and salt. We joke that we’re both dependent upon white powders (sugar and salt), which is in some sense true.
If we don’t exercise, we feel crappy. If we don’t sleep enough we feel worse. If we don’t eat right… you get the picture. Self care is a non-negotiable for both of us. In 2016, when most millennials are running at light speed to achieve, socialize and have it all, this can be a hard thing to prioritize. But when it’s what you do to survive, you make it work.
I realized during this time on her floor that Chelsea and I are bonded by a dependence on something outside of ourselves. Other people could go without drinking water or eating sugar. Not Chelsea and I. How does this simple fact change the way that we view the world and live our lives?
- We cherish our time on this earth and every day we’re given. We know that it could be gone at any moment, and don’t take anything for granted. Likewise, we value this earth as itself a miracle, nature as sacred and something to cherish and protect *cough* recycle and compost *cough*.
- We value people. As autonomous cell-machines that contain the miracle of life, people are just that – a miracle. Every one is different. Every single person has value. Every single person has interests, passions, fears, trials, and victories. Chelsea and I love fiercely and yearn for everyone to see their value and worth, know themselves at their core and express themselves. How does this manifest for us? For Chelsea, this manifests through empathy and dance therapy. For me, through connected, heart conversations and photography.
- We don’t sweat the little things. If Chelsea doesn’t take care of her blood sugar or I don’t drink water, we could have (and have both experienced) a medical crisis on our hands. Since we’ve been through these things and made it out on the other side, life’s stresses: the unexpected curveballs and all, don’t really phase us. We’re not superhuman- we still feel the emotions associated with a break up or an apartment lease falling through, but we are able to put those things in perspective.
Is it a coincidence that both Chelsea and I are artists? That we love reading books by Brene Brown, talking about empathy and vulnerability, and loving fiercely? Perhaps. Or perhaps experiencing the fact that we are mortal- that this life is not guaranteed- puts us in a less risk averse position than our peers. We’ve lived a bit more life than your average 23-year olds, so we’re determined to live our lives how our hearts and souls guide us to, not how society prescribes.
FEAR, Part 1
Let’s talk about fear.
Fear that you’re not enough.
Fear that your work won’t live up to your expectations, others’ expectations, or your previous work.
Fear of saying the wrong thing.
Fear of being judged.
Fear or not having enough: love, money, food, energy.//
As an artist, my most vulnerable fear is that I’m a fraud. That my last photoshoot was a fluke, and that I’ll never make work that lives up to that caliber again. That I somehow lucked into getting nice photos. That I don’t have intrinsic talent or skill.//
What do you do when those gremlins come out, perch on your shoulder and start whispering in your ear?//
Get out. Move. Move your body and get endorphins flowing.//
Connect. Reach out to a friend. There is nothing as powerful as a genuine human connection to affirm your existence, and the words of a dear friend can turn you around. //
Look within. While it’s great to connect with others (and as an extravert that’s my go to), we also need to be able to rely upon ourselves. If we can cultivate self-grace, we can call out our own irrational thoughts and show ourselves love. //
What fears do you struggle with, and how do you overcome them?
Originally posted as an instagram post.