21 Habits of People With Dysautonomia

21 Habits of People With Dysautonomia

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Dysautonomia refers to a group of disorders in which the autonomic nervous system malfunctions, causing cardiovascular problems, breathing issues or fainting. Living with a form of dysautonomia often requires constant maintenance to help stabilize your body and prevent major mishaps. Adapting to this new lifestyle may cause you to pick up some “habits” or behaviors you routinely do to stay as healthy as possible.

To better understand how this condition can affect a person’s day-to-day life, we asked our Mighty community to share the habits they’ve developed because of their dysautonomia. Maybe some of the following will sound familiar to you, too.

Here’s what the community shared with us:

1. “I always know where a chair is! I get so tired so quickly and standing for any amount of time takes a lot out of me, so I make it a point to know where I can sit in a hurry!” – Amanda E.

2. “Several grip bars in the shower. And as soon as I start to feel overheated, I immediately stop what I’m doing and cool down. If I can catch it quickly, it sometimes doesn’t get out of control.” – Sue L.

3. “I’m constantly moving when I have to stand in line. I lift my legs one at a time, bounce, do calf raises, whatever I can to keep blood from pooling and avoid being dizzy.” – Ciara C.

4. “Always telling someone where I’m going. I live alone but still text my mom when I run errands, tell coworkers when I run to the bathroom or shipping areas, etc. If I was to have a problem then someone at least has an idea where I am.” – Bay H.

5. “Mostly grocery shopping at night when it’s dark. The less sun, the better my symptoms.” – Sabrina S. L.

6. “Holding my breath when I bend down to raise my blood pressure momentarily so I hopefully don’t pass out from the bending.” – Diana W.

7. “Stopping suddenly, becoming still and quiet. Eyes closed and meditative breathing, closing the world out until I can get my heart rate back to normal so I don’t black out. To someone on the outside looking in, it must look pretty odd, someone standing in the supermarket, tightly clutching the shopping cart, doing relaxation exercises while the rest of the world goes on with their day.” – Donna-Jean I.

8. “When sitting in a chair I always sit with my legs crossed up on the seat because if I let my legs dangle they hurt. Wasn’t until I was 22 and was diagnosed that I made the connection.” – Sabrina M.

9. “Gatorade every time I wake up, even from naps! I sit in the shower, drink big chugs of water about five times a day. And try to remember to take my medication without my mom telling me to.” – Linnea F.

10. “I constantly pace myself when I’m moving around. If I’m doing a lot of motions I stop every five minutes and rest to avoid symptoms getting problematic. For example, taking breaks when cleaning my room. I also pace myself when walking in public, lean onto or grab things when standing still. I pace everything which also saves energy.” – Allison B.

11. “A stool in the bathroom for when I get ready. Sitting in shower. Simple things that make my life easier.” – Ashley H.

12. “My purse always has Gatorade and an emetic bag like they use in hospitals. Gatorade to stay hydrated, and the eme-bag for the chronic nausea.” – Caroline M.

13. “Counter-maneuvering – standing with my legs crossed, so as to get the blood to go back up to my head. I do it out of habit, which means I just stand like that preemptively.” – Susan F.

14. “I have an inappropriate sense of humor. If you don’t see the humor in things, life can get super depressing. I make a lot of jokes about my condition and issues. It may make others uncomfortable (hopefully not), but it makes me feel better and more in control of my life.” – Carolyn F.

15. “Lying down and putting my feet up, like on a wall or shelf or chair, and I do it anywhere, anytime. Doesn’t matter. I was passing out 10 to 12 times a day and that’s the only thing I can do that keeps me from actually passing out… it’s a sight to see when I’m at Walmart or something, let me tell ya.” – Kellie V.

16. “Salt on everything, Gatorade and water all day every day, taking baths because I can’t stand in the shower, compression socks and sitting down while I get ready (such as doing hair and makeup).” – Hunter H.

17. “I’ve become super organized, I live out of my agenda book and everything has its place in my apartment. It’s such a stress relief to not have to look for anything, not have mountains of clutter around me and always know (appointment-wise) what to expect from my day.” – Sami H.

18. “Sitting straight up in chairs, because sitting against the backs hurts my back and then it hurts to get up and walk.” – Tiffany L.

19. “I am never ever without a bottle of water no matter where I’m at! It’s my security blanket.” – Breanna H.

20. “Sitting. Everywhere. It doesn’t even faze me to sit down on the floor during work or to find the closest place to sit in every store (even when I look like a child)! I sit on the floor in the shower. I sit on the kitchen floor when I load the dishwasher. Whatever works. Sitting means being slightly less dizzy. It’s just normal for me now!” – Elizabeth L.

21. “Work smarter. Not harder. I am no longer able to carry my laundry so I loop a cane through the basket and drag it to the laundry room. Sometimes, you need to give your body a break.” – Deanna D.

What’s a habit you’ve developed because of dysautonomia? Share in the comments below!

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21 Signs You Grew Up With Dysautonomia

21 Signs You Grew Up With Dysautonomia

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Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health or diagnoses, please consult a doctor or medical professional.

If you’ve been diagnosed with a form of dysautonomia, it can be helpful and even reassuring to have a name and explanation for the symptoms you experience. But for some, a diagnosis not only sheds light on their current health situation, but the years (and sometimes decades) before diagnosis as well.

If you grew up experiencing certain symptoms that felt “normal” for you, it may have taken many years and doctor appointments before you realized they were actually early signs of a chronic illness. So, we asked our Mighty community to share some of the signs they grew up with dysautonomia, which they now recognize in retrospect. Maybe some of the following will remind you of your own childhood experiences.

Here’s what the community shared with us:

1. “I thought everyone fainted when they stood up too fast or were on their feet for long. I thought that was completely normal.” – Susan F.

2. “I was diagnosed with ‘exercise intolerance’ as a kid and they tried to give me an inhaler that didn’t work. I was always the last kid to cross the finish line for the weekly grueling marathon known as ‘The Mile’ and I’d be out of breath, about to pass out. I legit thought standing up and having your vision black out was normal, that it happened to everyone. Spiking a 150 heart rate from standing, same. Being short of breath at 15 climbing stairs, same. Even as far back as I can remember, I didn’t like playing outside or running around. I always preferred to draw or play with Barbies – quiet, calm, indoor, sitting activities.” – Courtney S.

3. “My first sentence was, ‘I’m dizzy.’ My mom thought I was saying, ‘I am busy.’ Never could do rides that spin or rollercoasters.” – Stacie J.

4. “I have always struggled with temperature regulation and always found myself being cold. I would wear thermals under everything and still be freezing although others were walking around in T-shirts and shorts.” – Lily T.

5. “When I was younger I was always picked on for the amount of salt I craved. So many horrible jokes about how I would have high blood pressure and heart problems, and my BP is still low and the heart is fine minus the tachycardia. Guess the joke is on them now that I know why I needed it so much.” – Heather G.

6. “I have always been told I was ‘part monkey’ since I adapted at a very early age to be able to pick things up with my toes when I’m standing so I don’t have to bend down or when I’m sitting so I don’t have to get up, since bending down and standing up both cause dizziness and can result in me passing out.” – Em M.

7. “I was always afraid I’d fall off the back of the bleachers during music recitals in elementary school. Now I know it’s because I would get dizzy and lightheaded from POTS, but back then I didn’t know how to describe the feeling, just that I was scared of falling.” – Lindsay P.

8. “I used to do my homework sitting on the floor with my legs up. I’d always be crumpling up to get my heart lower. My mum would always find me asleep in bed with my legs in the air up against the wall!” – Lisa K.

9. “The way my fingers and hands used to turn purple and red and even occasionally swell in normal fall weather. I also used to think that nearly blacking out upon standing up was normal for everyone!” – Leah B.

10. “I would have what I called ‘dizzy spells’ where I would get extremely lightheaded and dizzy. I would lose hearing, get black covering my vision and sometimes lose consciousness. It happened many times in high school and was extremely embarrassing.” – Jemma F.

11. “My friends always made jokes that I was not a ‘real woman’ because I didn’t like to go shopping. Turned out that any kind of shopping or walking around looking up and down made me feel dizzy and it was due to my low blood pressure. At 30 I was finally diagnosed and advised to avoid activities like going shopping.” – MariaElena V.

12. “I remember being in high school and not being able to stay awake. Almost every day I would fall asleep at the same time every day – no matter what I just couldn’t stay awake. Also missing school because I fell back to sleep on the couch after getting ready. My mom would freak out once she realized I was asleep when I should be at school. It wasn’t until I was almost 30 when finally knew why I was the way I am.” – Ashley C.

13. “I had (and still have) a ‘party trick’ where I can drink an entire 20 oz. bottle of water, Gatorade, Powerade, etc. in about 30 seconds. I have always needed more fluids than anyone else around me, and always had something to drink on hand.” – Kourteney K.

14. “No matter how conditioned I was for sports my heart was always pounding out of my chest. My chest would just hurt so bad after a workout.” – Marissa H.

15. “I started fainting in my teens, I always craved salt and never understood how people could stand in the shower. I always sat whenever I could and sat cross-legged even on chairs because my legs would ache and turn red if they dangled. My resting heart rate was 130 to 140 bpm and I was told that was just ‘my normal.'” – Samm D.

16. “When I was 5, I started smelling rubbing alcohol every time I stood up and would get ‘black spots’ covering my vision and a pounding headache. I felt like the only kid who couldn’t run and play; my legs were always sore and achy. Didn’t get diagnosed until I was 15 after passing out on the tilt table test. I had no idea that what I was experiencing all those years was syncope and near fainting episodes. I tried to explain what I was feeling when I was 5 and no one believed me until I was diagnosed 10 years later.” – Skyelan R. S.

17. “As long as I can remember my legs always turned purple if I stood for any length of time. Honestly it didn’t ‘click’ that it was dysautonomia until I joined support groups and saw others had the same issue. I always assumed it was because I was unusually pale.” – Bai J.

18. “During P.E. we had to manually check our own heart rates a lot. Mine was always so much higher than everybody else’s that I thought I was counting wrong. I started skipping every other beat when I counted just so I could match what the teacher thought I should be at.” – Lindsay P.

19. “I was always sitting upside-down on the couch, which confused my family, but was likely because I got lightheaded when upright. I’ve never been able to run, which was due to tachycardia, but I never knew that. In high school, I had problems standing for the duration of choir, walking across the entire building within five minutes, using the stairs and getting up on time, all of which are likely due to POTS and other tachycardias.” – Kat E.

20. “I was always (and still am always) cold. Unless I was exercising, then I’d get so hot sometimes I’d get sick. I was always embarrassed in gym because even light exercise had me looking like I jumped into a pool fully clothed. I stopped giving it a second thought until my electrophysiologist told me that temperature intolerance was part of it.” – Katie M.

21. “Almost passing out upon standing from squatting. I used to think that happened to everyone.” – Christi S.

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What My Life Is Like With Autonomic Dysfunction

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Autonomic dysfunction. Those words probably don’t mean much to you. Three years ago they were gibberish to me. Chances are unless you’re a medical professional or a dysautonomia patient, you probably haven’t given much thought to your autonomic nervous system… so let’s lay down the basics.

Your autonomic nervous system (ANS) controls your body’s automatic functions – all the little things you don’t even have to consciously think about to keep your body functioning. It regulates things like your heart rate, blood pressure, body temperature, digestion, and much more. Inevitably, when this system fails to work properly, you’re going to end up with some serious consequences. Because your ANS controls so many different functions within your body, it can malfunction in many different ways. This is why dysautonomia is a blanket term for a variety of unique conditions associated with autonomic dysfunction.

What is life like for me with autonomic dysfunction? I’ll try to explain.

In the four times I’ve either nearly or fully passed out, I’ve found that there are two ways it tends to happen: either gradually or immediately. When it happens slowly, I can catch it in time and prevent it, but it feels a lot worse because I am fully aware of everything going wrong in my body. When it happens quickly, I have a matter of seconds to recognize it before I lose consciousness, but I’m out before the worst of the symptoms begin.

I imagine this has something to do with how quickly my blood pressure drops. The first scenario is what happened during my tilt test recently, and it reminded me just how terrible that gradual drop is. Your legs feel heavy and tender, your arms cold and tingly. The churning in your head increases as your stomach starts to follow suit. Your chest gets tight and your heart races. Breathing gets a little more difficult. Your body is overwhelmed by a cold sweat that makes you shiver and your hearing starts to get muffled and distant. As your vision starts to go, they finally lay you back down. Then comes the head rush as your blood floods back into your upper body. Your head pounds with pain, but with each minute your symptoms slowly dissipate. You’re shaky and dizzy, but it feels a million times better than what you were feeling five minutes ago. Still, you know you’ll be useless for the rest of the day. It’s time for water, french fries, and Netflix. Note: this is still a relatively new area for me and many dysautonomia patients have passed out much more frequently.

When I woke up this morning I felt tired and sore as if I had spent yesterday incredibly active. But all I did yesterday was make dinner and write. I look at my phone and see that it’s nearly 11 a.m. I’m usually up by 8, but I’ve been sleeping a lot lately due to my current flare.

There’s a dull ache in my chest and my mind feels fuzzy. I lay in bed for about half an hour, allowing my body to fully wake up. If I get up too soon, it’ll throw off the rest of my day. It’s the perfect time for kitty snuggles.

When I finally do stand up, I take it slow. But even then my vision goes a little dark as my body adjusts to being vertical. It’s back within a few seconds and I make my way to the restroom. Looking down at my feet, I recognize the blood pooling in my legs that makes them appear darker than usual. I get my breakfast, fill up my bottle of water, and sit down on the couch, already winded from my short excursion. I listen to a sermon online as I eat my food and then dive into editor-in-chief duties.

No, I haven’t put on pants yet today. As I sit here writing, my arms are getting a little tingly and I’m a little short of breath. If I don’t focus, my vision gets a little blurry. I can feel that my heart rate is a little high, so I prop up my legs and reach for my bottle of water. Maybe I should have put a little more salt in my oatmeal earlier. Yep, salted oatmeal. Increased salt and fluid intake helps to increase blood volume and, therefore, decrease symptoms.

I’m starting to get uncomfortable with the fact that my hair is greasy and I need a shower, but showering while home alone isn’t the safest option for me. The heat of the water dilates blood vessels and exacerbates my symptoms. Three out of my four fainting, or near fainting episodes, have happened in the shower. So I wait until my husband gets home, just in case. On a good day, this wouldn’t be as much of a problem, but during a flare, I know better than to attempt a shower alone.

On a good day, everything feels more stable. I can manage larger tasks like cooking a meal or cleaning a room, as long as I pay attention to how I’m feeling and take breaks as needed. But any major endeavor and I know I’ll be taking energy from tomorrow. All of my symptoms are still there, but they’re subtle enough to ignore if I want to.

If I’m lucky, I might even feel just a little energized when I wake up in the morning. I’ll likely feel like a semi-healthy human being for at least a few hours that day and I’ll want to get dressed and go somewhere, clean the house, or climb a mountain. That’s when I have to start reigning myself in to keep from overdoing it while still enjoying my good day. Because beneath this home-bound, shower-needing, pale exterior there lies a heavily ambitious girl with big dreams.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Nastia11

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26 Photos That Show What Dysautonomia Really Looks Like

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Dysautonomia includes a range of conditions – such as postural orthostatic tachycardia syndrome (POTS) or neurocardiogenic syncope – in which the autonomic nervous system (ANS) does not function properly. This can affect major organs and bodily systems, as the ANS is responsible for activities such as regulating internal temperature, breathing patterns, blood pressure, heart rate, digestion, excretion and pupil dilation. The dysfunctioning of these systems can cause a number of symptoms that may have serious effects on your health if not properly managed.

While some symptoms of dysautonomia are clearly visible, such as blood pooling in your legs and feet, many others, such as a racing heart, lightheadedness or an upset stomach aren’t always apparent. To better understand the experiences of those with the condition, we asked our community to share photos that show what dysautonomia really looks like. Everyone may experience different symptoms and forms of the condition, but the following photos show that all are warriors.

Here’s what the community shared with us:

1. “I have to nap daily. Sometimes all I do is wake up, take my medicine and already need to nap. Even napping is exhausting! But having the purrfect nap buddy makes it a bit better!”

woman lying down under a blanket with her cat

2. “I have dysautonomia and was diagnosed with neurocardiogenic syncope, autoimmune disease, irritable bowel syndrome (IBS) and more. To help with my bradycardia I have a pacemaker. This picture was taken when I had my first change of pacemaker, after 10 years of being diagnosed. I’m smiling because this is how I fight back. I always try to have the best attitude towards my condition.”

woman smiling in a hospital bed

3. “This was at college orientation tonight (I’m the one on the right). I was having a great time, but when I started dancing I immediately felt my symptoms. My legs got tired and started hurting halfway through a song, and I was too tired to keep jumping. I couldn’t follow the instructions in another song (‘get low’) because I probably would have fallen over. I spent the rest of the night wishing I didn’t have dysautonomia.”

two girls smiling and walking outside

4. “My 9-year-old diagnosed with dysautonomia, cyclic vomiting syndrome, anxiety and PANDAS. He has trouble controlling his body temperature and has low blood pressure. He is an amazing athlete, especially for all he deals with!”

boy lying in a hospital bed

5. “This day I was completely exhausted and my skin flushing was making me feel very hot. My blood pressure was super high, my heart rate was at 130 sitting and I was miserable.”

woman sitting down with her face flushed

6. “I actually have an album in my phone titled ‘doctor.’ I try to take photos and videos of my symptoms, as they don’t always occur at my appointments. I also have a list I continually update so I don’t forget to mention things!”

photo album of visible symptoms

7. “Weekly IV fluids… one to two liters along with daily Flecianide, fludrocortisone, metoprolol and amolodipine to treat my severe POTS. Cardiac rehab as well.”

woman sitting in a chair with a scarf tied around her head

8. “This is a photo of blood pooling in my legs because of POTS. It is especially prevalent on my right side because I have problems with muscle weakness on that side due to a traumatic brain injury. This photo was taken after an especially taxing day that exasperated my symptoms. I was experiencing dizziness, lightheadedness, tachycardia and other pre-syncope symptoms. In addition, I was extremely nauseous and had been dry heaving for a few hours prior to this.”

woman's legs with blood pooling

9. “Tilt table results.”

tilt table test results

10. “This was the day I received my Master’s degree. My spirit is feeling accomplished and grateful and amazed; my mind is focused on pretense, on pretending I’m not afraid I won’t make it through the ceremony without vomiting, fainting or collapsing. The best part about this day was, of course, receiving my counseling degree; the worst part was wondering whether or not my body was going to allow me to use it.”

woman walking the stage after graduating with a master's degree

11. “I took this picture by accident, but when I realized it was exactly what my world looks like when my dysautonomia is flaring, I kept it.”

black and white blurred photo

12. “This is what happens when I stand up too fast or too long. I have both Ehlers-Danlos syndrome (EDS) and dysautonomia so it takes me a while to get back up when I fall/pass out. I had accomplished school and three choir rehearsals the day this was taken. I was very overdone, but my sweet doggie was making sure I was OK.”

woman lying on the floor petting a big white dog

13. “This is me now.”

man with red cheeks

14. “This is me when a friend wanted to use me as a model for her photography. I was dizzy and lightheaded because it was way too hot outside for my POTS to handle. After this picture I spent 15 minutes laying on the concrete trying to get my heart rate to go down.”

woman sitting outside in workout gear in front of a concrete wall

15. “This is what the end of my day looks like and what freedom really looks like. Because I have more freedom attached to an IV pump then I ever did before.”

medical supplies

16. “[This was] last week after accessing my port for the very first time on my own! It will make it so much easier to get fluids this way, plus I can get them more often.”

woman with port in her chest

17. “Lyme-induced POTS. Trying not to pass out when going downstairs. A daily occurrence – multiple times a day. Here I am getting tunnel vision and the “whump-whump” staticky sound in my ears. Time to grab the rail and get my head down.”

woman sitting at the top of the stairs with her head in her hands

18. “I have a few diagnoses, like most of us do, and most of us have dealt with their fair share of testing as well. This was last month. I had to have an EKG to check my heart.”

woman in the hospital with wires all over her chest

19. “I can walk, but not long distances. [I can’t] stand up for long without getting dizzy, drop in blood pressure, pre-syncope/syncope, etc… This was on my way to be a volunteer at a summer camp and had a few hours of waiting for the other volunteers. When I am traveling by airplanes I order assistance and borrow a wheelchair at the airports. Borrowing a wheelchair makes travel and shopping easier to overcome. Yes, it is exhausting to use a wheelchair as well, but I don’t have the same big risk of falling because of syncope or seizure and I still use less energy sitting in the chair than walking. It is a solution to the bad days I need to get out or am going somewhere to travel, but am I able to go without I will.”

woman sitting in a wheelchair

20. “I was in the middle of nowhere at camp and I got one of the dysautonomic events. I started vomiting. This is what I ate all day – a hummus sandwich and electrolyte water – while everyone else enjoyed juice and normal water.”

paper plate with bread crusts

21. “For me, life with dysautonomia means running IV fluids every day. Even before a birthday party, just so I can stay upright!”

woman receiving an IV infusion

22. “I have POTS. This was taken right after I had a bad syncopal episode in a grocery store. As you can see, my feet are bright red because of the blood pooling in my legs. I had to lay on the grocery store floor until it passed. This happens often enough that I now get one to two liters of IV fluid daily to increase my blood volume, and now use a wheelchair for shopping and community mobility so I don’t pass out and hit my head!”

blood pooling in woman's feet

23. “After pacemaker surgery for gastroparesis and POTS.”

woman lying in a hospital bed after surgery with a breathing tube in her nose

24. “One of the worst POTS episodes I caught – well, before I was diagnosed. This was my norm for most of my life. My heart rate could spike as high as 150 – just standing. I felt like I was going to die when this picture was taken. I could barely stand, barely breathe. I was shaking all over and weak. I had to fight every second to get my diagnosis. I’m doing better now, but it’s only barely controlled by several medications (I’m one for whom water and electrolytes and salt do nothing, whee). I also have esophageal and intestinal dysmotility and possibly mild gastroparesis, which my GI says is probably caused by my dysautonomia.”

heart rate monitor

25. “This is a photo of what people see almost every day. I work so hard to try and look OK. Whether it’s with makeup or other things to distract from the fact that I really feel completely awful. My friend took this picture and while I look perfectly fine, I could feel my heart beating in my chest. My legs were turning purple, I was dizzy and nauseous. All I wanted to do was lie down and take a nap. But if I were to do that every time I felt this way I would never leave bed. So I put on this face. This is the face of dysautonomia.”

woman sitting outside and smiling

26. “I felt the lowest in this picture. I had been in the hospital for about a week and it had taken a toll on me. I used music to help soothe me and my mom sat there and sang with me. Dysautonomia can be extremely difficult to live with at times but I just keep reminding myself that there are better days ahead!”

woman watching tv from her hospital bed

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14 Tips for Having Fun at Concerts With Dysautonomia

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I love music. I am fortunate that between the ages of 16 and 45 I attended more live concerts than I can count. My last concert while healthy was in October 2010. I saw the Buffalo band the Goo Goo Dolls at a small venue. I showed early symptoms of dysautonomia but had no idea that life would turn upside down two months later after the flu seemed to dismantle my autonomic nervous system.

I had to sell Elton John tickets in 2011 as I was not well enough to attend the concert. That was a huge disappointment and for a while I could not enjoy concerts.

I slowly got back to attending shows – first the Goo Goo Dolls at an outside venue in which I could stretch out on the lawn and enjoy the atmosphere and then the same band in smaller theaters in Buffalo.

I recently ventured out this summer into larger arenas in Cleveland, Ohio  and saw U2 at an 80,000-person stadium and Billy Joel at a ballpark half the size. I will see U2 again in my hometown.

two women at a concert
Laura (right) and her daughter at a Billy Joel concert in Cleveland.

Before even considering attending a show while living with chronic illness, here are tips I have found helpful to a successful concert experience.

1. Read the assessable information on the venue’s website. See what can and cannot be brought into the concert. At the two shows I attended, a stadium size clear bag was required. These can be purchased on Amazon.

2. Secure a doctor’s note that states necessary accommodations. A brief letter I carry explains I have a neurological condition which causes frequent dehydration; sodium-based drinks must be carried at all times. While I probably could purchase a Gatorade-type drink at concerts, the prices for the amount I need can be exorbitant and a low-sugar option may not be available.

3. Be pleasant but firm in your needs. At one of my earliest concerts after the dysautonomia diagnosis, I was promised a folding chair to elevate  feet. However, security refused this accommodation until my husband spoke up and said without the chair I faint. A chair was quickly produced.

4. Call ahead to gather information on where is the closest parking, what entrance is best for ease of walking and to interact with people accustomed to dealing with medical needs and any other relevant information. Ask for ADA (Americans with Disability Act) accommodations. If the person on the phone cannot help you, ask who is available for assistance. I have purchased seats that did not fit my needs, as some concerts sell out so quickly there is no other choice. If this happens, contact the stadium immediately and ask for a change of seats. A nominal fee may be charged but this is well worth the trouble.

5. Don’t be afraid to ask for what you need. We have a right to attend concerts even if accommodations are necessary.

a view of cleveland from the stadium
A view of the city of Cleveland from the stadium.

6. Make sure to take necessary precautions before you attend a show. For me this may include taking medications, increasing fluids and resting prior to attending.

7. Bring a sweatshirt in case the temperature changes. I also find compression socks helpful.

8. Provide feedback to the venue. At the two summer concerts I mentioned I had completely different experiences with security – one positive and the other negative. I wrote a joint letter to the venues, stating what occurred and why it is important for security to be aware of people with chronic illnesses (oftentimes invisible) and treat them with respect. I received a thank you from the one venue and several emails from the other assuring me security procedures would be reviewed. I also received a follow-up call thanking me for my input and an assurance changes were made. I am heading back to this venue – as their guest – and will be anxious to see if security measures have improved.

9. Bring someone with you who understands your abilities. Review ahead of time any needs in which they can assist.

10. Have a plan if you feel unwell during the show. I must keep my feet elevated or stretch out to feel better. For this reason I secure aisle seats. However, sometimes I need to leave the seats, go in to the concourse and stretch. I often scope out a place to do this, in addition to the bathrooms.

11. Ask your companion to stand in line and purchase your concessions.

12. Go into a show with the hope of attending the entire event but the realization that at times you might need to leave early.

13. Conserve energy. I often want to jump up, dance, sing and scream.  These are energy zappers so I try to contain my excitement.

14. Have fun.

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How I Can Help Others Despite My Physical Limitations With POTS

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“Thee lift me and I’ll lift thee, and we’ll ascend together.” I have found a lot of truth in this Quaker proverb the past few years as I have dealt with the debilitating effects of POTS (postural orthostatic tachycardia syndrome) and autoimmune disease, yet have been lifted by countless friends and neighbors.

 

One of the things that has been especially hard about my illness is all the things I miss out on, especially with my kids and family. It is hard to stand by and watch life happen without me. Just a few months ago my husband took our kids to visit his dad over spring break. He sent me pictures of them all playing happily at the beach. I was glad to see them having a good time, but it still hurt my heart to not be there making those memories with them.

boy playing on the beach at sunset

A sweet friend of mine, knowing I was home alone for the week, asked if she could come visit me. It was a great visit and truly helped to lift my spirits. What amazed me even more about this act of kindness is that my friend is currently battling cancer. In fact, it was her last “good” day before her next round of nauseating chemo – and she chose to spend her precious time with me! Oh, how much that meant to me!

As I have spent the last couple of years fairly homebound and bedridden, I have been consistently impressed by the number of amazing people there are in this world who are so giving of their time, talents and selves.  I’m amazed at the level of generosity and thoughtfulness of others. One of the many things my time in bed has made more infinitely clear is how much we need each other. We weren’t put on this earth to live a solitary life, but to serve and to be served.

Everyone has struggles and heartache. Everyone experiences loss – whether it be death of a loved one, poor health, struggling relationships, loss of job, home or financial security or something else entirely. We don’t all have the same problems (thank Heavens!), but that doesn’t mean we can’t show compassion and empathy for others, no matter what they are going through.

A comment I frequently hear from others is, “Well you’re stuck in bed, so I have no right to complain about my problems.” Not true! We all have difficulties we are struggling with, and we can all use support.

This life is not a competition to see whose problems are the most difficult. Just like one person’s good fortune in no way diminishes another’s blessings, one person’s trials does not make another’s less hard or frustrating for them. And just because someone’s problems may seem minor to one does not mean they aren’t a big deal to the person experiencing them. (I have to often remind myself of this when it comes to my kids and the struggles they are dealing with that may seem inconsequential to me).

colorful umbrellas hanging in a park with the text 'thee life me and i'll life thee and we'll ascend together'

Linda K. Burton said, “We are here to help, lift and rejoice with each other as we try to become our very best selves… There is so much more happiness to be had when we can rejoice in another’s successes and not just in our own. When we seek to ‘complete’ rather than ‘compete,’ it is so much easier to cheer each other on.”

Being the beneficiary of so much compassion has caused me to reflect on my own deeds. When I was healthier and able to do more, did I? Was I as aware of those around me that were in need of lifting? And now that I am less capable of physically helping others, are there still things I can do to be of service? Since I have been sick, I feel like I have become more keenly aware of others’ sorrows and needs, yet I often feel so powerless to help.

So, how can I help others when I can barely help myself?

Many have shown me that I don’t always have to physically do something in order to help.  Sometimes a note, a text or a quick visit has had the greatest impact in buoying my spirits. Just knowing someone else cares can make a world of difference.

colorful ballons in a park

Meals, treats and gifts are certainly a happy surprise (and I have been so amazed at the generosity of others), but I’ve also learned that it’s more important to do something than to do nothing. When you’re not able to send a meal, at least send at text. When you don’t have a gift to give, write a card.

There have been so many times I’ve had a rough day and gotten an encouraging text or note from a friend. I’m especially impressed with those friends who have been consistent. Even being surrounded by people, trials can be extremely lonely. It means so much to know you haven’t been forgotten.

Knowing what a difference it has made for me, I have tried more earnestly to listen to that still small voice. If there is someone on my mind, it is probably for a reason. Even if I don’t have a great piece of inspiration to provide, I can still reach out to say, “Thinking of you today. Hope you are doing well!”

I have also become much more emotive with my friends and loved ones. I commonly tell my friends how much I love and appreciate them. Previously I may have worried about sounding too corny or cheesy. I don’t care about that now. Everyone deserves to hear how incredible they are.

Words can be a powerful tool for good! In an effort to highlight the good deeds of others, thank those who have been great examples to me and put forth more positivity into the world, I started doing a “Hero of the Week” post every week (or so) on my Facebook page. I have loved openly sharing my appreciation for others in my life and hopefully lifting them as well.

Another form of service I have come to rely heavily on is prayer. I may not be able to physically help others, but I can always, always pray for them.    

statue of women praying

Though I have learned it anew, I first realized this lesson several years ago. My twins were born premature. Those two babies completely rocked our world (in both the good and bad sense). After coming home from the NICU they quickly became colicky and would cry for hours on end. Within a couple months both also developed RSV (a respiratory infection). They were miserable and so were we. I remember wondering how two tiny human beings could be such an incredible blessing and such a trial at the same time. The feedings, diaper changing, fruitless attempts at calming and sleepless delirium became our new norm. We went into survival mode, with little time to even shower or clean house. We could barely care for ourselves and our kids, let alone help anyone else.

At this same time, in fact, just a few weeks before the twins were born, my mom, who lived 200 miles away, was diagnosed with breast cancer and started the rigorous treatments of chemo, surgery and radiation. It was heartbreaking for both my mom and I to watch each other struggle from afar and be able to do very little to help the other. I longed to be in Idaho helping my mom and she longed to be in Utah holding the twins and helping me. It was at this time I truly realized the power of prayer for others – and that no matter what my own abilities are (or are not) to help someone else, I can always pray for them. If I couldn’t be there with my mom, I could at least pray for angels to attend her, and I know she did the same for me.

No matter our circumstances in life, we can recognize those around us who are struggling and work to achieve the proverb, “Thee lift me, and I’ll lift thee, and we’ll ascend together.”

This post originally appeared on Mommy Can’t Dance.

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