Profiles: Living with POTS
My Journey from Lyme to POTS - Kaleigh, age 17, Connecticut
The story of my health is a long one, which is unfortunate, considering I’m only 17. I was a healthy child, except for having severe Lyme disease at one year old, and I call it severe because I couldn’t bear weight. I also am prone to migraine headaches, which run in the family.
However, when I was around 13, weird symptoms arose. I used to be a competitive swimmer, but suddenly I began to dread going to practices and meets because of how sick and awful I would feel in the pool. My heart would race, I’d feel like vomiting, and I felt exhausted afterwards. Once, during a race, my mom watched me zig zag in the lane. I was so dizzy and disoriented. My heart was beating so fast. We thought it was a panic attack - where a person becomes so anxious and fearful that their body produces physical symptoms like rapid heartbeat, headache, nausea, etc.
Then, in 9th grade, I began to feel ‘weird in the head’. I lost all motivation, had no ability to concentrate, had short term memory loss, and was completely exhausted all the time. I didn’t feel like myself. I was tested for Lyme disease, and I was incredibly positive. It was unclear whether this was from the tick bite when I was one or something more recent. I was treated for Lyme disease with heavy antibiotics for 6 months, and it seemed like things were looking up. For the last couple years, I’ve seen so many doctors and my medications have changed a thousand times. It was hard. I continued my fight with Lyme through freshman and sophomore year of high school, along with feelings of depression, isolation, confusion, and frustration.
In December of 2016, I began to experience new symptoms again. I would feel very dizzy, more than ‘normal’. I got more headaches, was tired, and despite my BEST efforts, I couldn’t stay focused and organized at school. I even felt close to fainting sometimes. My mom took me to a 30 minute aerobics style class (where the average age in the room was probably 60) and afterwards I vomited and had to lie down. So, in a fit of frustration, I began my own investigation.
Using a home blood pressure cuff, I tested my blood pressure and heart rate laying down, sitting, and standing, and was surprised by the clear spike in beats per minute by standing. I remembered a girl from my gym class telling me she had postural orthostatic tachycardia syndrome (POTS), where her blood pressure is off and heart rate changes when standing. I researched the condition and was completely convinced this was what was wrong. I saw a cardiologist, who confirmed the diagnosis only two short months ago.
Living with an invisible illness has proven to be difficult, especially when it was invisible even to me. But with determination, support, and hopefulness, I really do think that it is possible to stand up to POTS, or to stand up to anything.
A Decade of Living with POTS - Jess, age 25, Ohio
I was diagnosed with POTS ten years ago when I was in high school. I was in and out of doctor’s offices for about a year and tested for everything from brain cancer to leukemia to lupus before I was finally diagnosed with POTS. I was missing so much school that most of my family and some of my doctors thought I was faking illness to get attention. What they didn’t know was that I was sick to my stomach every morning and I had severe “brain fog” - it felt like I was watching my life through a camera lens. Sometimes I would feel so disconnected I felt like they were speaking a different language. Standing made me feel nauseous and my feet and legs turn purple. I would get these prickly, crawling feelings in my scalp, hands and arms. My memory started to deteriorate, and sometimes I would wake up terrified because I couldn’t figure out what day it was or what I had done the day before. I slept for 18 hours a day but was still exhausted. I became extremely thin and my hair was falling out. The neurologist told me to try to live “as normal a life as possible” but that I would never be able to function like a normal person.
The worst part was seeing my life completely deteriorate. I went from being in honors and AP classes to dropping out of high school and getting my GED. I had been a competitive horseback rider, training a couple of hours every day to not being able to make it through a half hour lesson. I couldn’t talk about horses or even look at old pictures for years without tearing up. Once I was out of school, many of my friends stopped calling. My remaining friends would get upset when I had to cancel plans because the idea of leaving the house sounded like torture. I lost years of my life to POTS.
Eventually, the symptoms started to wane. I learned I would have periods of relapse and remission. I have a hard time keeping a job and worry constantly about my future. I’ve been fired for “having too many health problems,” and been told that “I need to sort them out if I expect to keep a job.” There are still people around me who believe I have been faking for the last ten years. There are still days where I feel immense anxiety, depression and guilt that I am not functioning as a normal member of society. The people who call me “lazy” have no idea how badly I would love to wake up early, have a busy day at a full time job, run errands, then come home to cook and clean. My hope is to just get through each day.
Learning to Walk Again – Brooklyn, age 19, Texas
I am a professional actress. Never starred in any mainstream productions. Never been on Broadway. Never been trained. Never participated in an acting class. Never been in Hollywood. I am a professional actress. You'll find me playing the lead in 'The Chronic-als of Illnesses.' I play the spoon hunter.
If you haven't guessed by now, I'm a chronic illness survivor. The diagnosis is postural orthostatic tachycardia syndrome. I had been experiencing syncope, low (and fast) heartrate, along with joint dislocations, intense chest pain, dizziness, vertigo, oddly colored extremities depending on what position I was in, etc. Did I think to tell anyone? Course not! Fainting twenty plus times a day and dislocating joints right and left is all part of growing, right? Either that, or it's for attention. You pick.
Two and three quarters of a year ago, I woke up and couldn't move my legs. I went to the emergency room, and got rushed to the children's hospital straight away. During the hospitalization, I came clean to the doctors and my parents about my symptoms (I was only 16 at the time). The doctors didn't know beans about the illness, though they attempted to understand the severity of my symptoms by tricking me into thinking they were going to hold me upright and then letting go of the gait belt. Probably to their disappointment, I collapsed. Another pleasant doctor experience to add to my extensive list. Thankfully, I could walk by the end of the week, and was sent home. Cue multiple physical therapist visits, frequent doctor visits, extensive testing, constant 'you're-faking-this-es', and an extreme amount of frustration, aggravation, and debilitating pain.
This is the part where I became an actress.
"I'm doing so much better!"
"My chest doesn't even hurt anymore!"
"Gee, I can't remember the last time I fainted!"
"I just didn't sleep so good last night."
It wasn't alright. I was finally diagnosed with Ehlers-Danlos Syndrome alongside Dysautonomia, and it was nice to at least have an answer as to why my physical condition was so screwed.
Tornado, cyclone, call it what you will; October hit, and I got sent right back into a wheelchair. I wasn't paralyzed, but I was indeed unbearably weak. By December 2014, I was back in the hospital. Nearly all of the doctors and nurses thought I was faking this complex condition, and all stated that 'no one can dislocate something on accident,' or 'if you wanted to walk across the room, you could,' and all other sorts of nonsensical insinuations based only off of burnable textbook material.
But I acted. I acted my way straight out of that hospital, and pretended to be stronger, and walk taller, and faked my way all the way until January when...
...I woke up paralyzed.
But this time, I was losing feeling. Fast. I was hospitalized yet again. I faked my best positive attitude. "It's alright! This has happened before!" Except this time, I was paralyzed for 9 months. I continued to have blood pressure issues, heartrate problems, and syncope.
I was an actress. Everything was fine. Everything was happy. Everything. No one knew I was miserably depressed.
I think it was a God thing when my mom found out about stem cell treatment by way of one of our doctors. I had stem cells removed from my stomach, and they got sent off to wherever it is they reproduce them. Soon after, I was on a plane to Mexico to have those cells reinserted.
The goal was to have three transfusions of cells; however, due to Dysautonomia and all of its lovely chaos, I had to stop at two transfusions. Three would be overdoing it (especially since at the end of the second, the paralysis moved up to my navel).
I didn't see a result. I didn't see anything. My head hurt worse. My paralysis had worsened. I thought I would immediately wake up and walk. Nope. Not at all. The doctors assured me that it could take up to a few months for them to work, but I didn't believe them anymore. One morning, I woke up and did what I attempted to do every morning. I tried to wiggle my toes...but this morning, they moved.
It was a slow process; the neuropathy was unbearable. I could feel every single nerve connecting. It burned. At that point, I began to have hope once again that these stem cells might somehow be our answer to many healing prayers.
Then I lost feeling again.
"Okay, God," I said (when no one was home except myself), "I'm gonna walk by faith." I put pillows around my wheelchair, locked the brakes, and manually set my feet on the floor. I...I felt the floor. I had forgotten how a floor felt. My joints cracked; all of them. I was trembling. But I took a step. And another...and another. I made it all the way across the floor to my mirror, and the first words I said in that mirror were... "I'm so tall!" All of this led to a significant improvement in my POTS symptoms. Everyone called it a miracle. I still do.
I've been walking for over a year. Sometimes, I'll still walk over surfaces I haven't been over yet, and it feels new, and odd, and beautiful. Yes, my POTS symptoms still exist. I'm still very much a spoonie. I'm still very much an actress. I can't tell you if it was solely stem cell treatment that helped me improve so much, because I think it was a combination of God, prayers, hope, faith, stem cells, doctors, friends, family, support, and resilience.
If my story tells you anything, allow it to encourage honesty. Honesty will save you. No, don't be the person who rattles off every single symptom they're experiencing when the grocery store clerk gives a rehearsed, 'Hi, how are you?' But be honest to the ones who are there to help you. I don't care what any non-spoonie tells you; sometimes, you just can't fake healthy, and that is O K A Y. We're different. We're resilient. They don't understand.
You might be like me. You might leave this story and give the biggest smile to the next person who tells you that THEY see an improvement in your symptoms, when they don't know spit. I should practice what I preach, but I can tell you that playing the role of a healthy human is something that only a healthy human owns the rights to do. Be yourself. If you're sick, okay. If you feel brain foggy, okay.
Acting all healthy doesn't work.
I should know.
I'm a professional actress.
...But I'm thinking of retiring pretty soon.
POTS from a Man’s Perspective - Denny, age 44, Pennsylvania
I was diagnosed with dysautonomia/POTS in November 2014 after appointments at four hospitals and with 12 physicians. Looking back, many of my strange medical issues over the years can be explained by this diagnosis. Although this syndrome is more common in young females, I want my story to be heard so that people know that POTS does not discriminate based on age or gender.
I used to be an active, energetic, healthy work-a-holic. I was plugging away at life like most adults, working 65 hours a week at a job that I loved. I enjoyed working around the house with my wife, splitting and stacking firewood, and going for walks and to craft shows, concerts etc. Unfortunately, I am no longer capable of experiencing most of these things.
This invisible medical issue has been a complete life changer. My symptoms used to be weaker and come and go. As of January 2014, my issues have increased and happen daily. A tight chest, pale skin, blurred/spotty/wiggling vision, heat intolerance, join/muscle pain and fatigue and lower back pain are common. I also suffer from intermittent hearing loss, face numbness, headaches, trembling hands, impaired thinking, excessive sweating, dizziness, fainting, and neuropathic pain. I am unable to take any of the medications that can alleviate symptoms because of adverse effects. I am fortunate to not need a wheelchair yet, but I definitely can’t work and play the way that I used to.
Life can change rapidly, and it’s easy to get discouraged when you have no control over your health. I feel like I have lost so much because of this illness - employment, friends, and fun now elude me. I am down to one faithful friend and a few sympathetic family members. I am incredibly fortunate that my wife has been so supportive as I have battled POTS. She has been my whole world. I can longer work, and really miss that desperately. I’m waiting for a cure, so that I can go back to the life that I want to live. I rely heavily on my faith to comfort me as I wait for an effective treatment or cure for my POTS.
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My POTS Progression over a Decade - Katie, age 28, New York
I grew up thinking I was weaker than normal people because I couldn't keep a thought in my head, always needed a nap, and physically didn't have any stamina. And I was embarrassed that it took me ten times longer to be able to perfect a skill, whether it was schoolwork or a gymnastics move. I'd spend hours in my basement training myself. I spent hours sitting in splits while doing my homework. In my teens I learned the magic of caffeine, and by high school, I was having Diet Mountain Dew for breakfast, lunch, and dinner. My heart was always beating so fast I could hear my pulse in my ears. I always felt dizzy and weak. I was always sick with a cold. I popped Advil like candy as soon as I hit puberty. I was taught that showing pain equaled weakness so I kept the pain to myself.
I worked so hard to act normal. Still, others noticed my shortcomings. My 5th grade teacher called me “The Bathroom Lady” in front of my class because I constantly had to use the restroom. What my teacher and classmates didn’t know was that my thirst for water was insatiable, and also I felt like if I didn’t get up and move every 20-30 minutes, that I would fall asleep on my desk. I couldn’t concentrate in class after the first 10 minutes of sitting still. In high school, my cheerleading team lovingly called me the “Southerner” because I was very slow to learn a routine or remember things. However I would practice so hard that by the time I finally got a routine down, I’d be at the point of almost every formation. And when things did happen like falling down, tripping, walking into walls, etc. I'd say how clumsy I was and laugh it off. When I passed out, I'd always be like sorry, my fault, I didn't eat a good breakfast or that I must have partied too much the night before. The truth was I never miss breakfast. I honestly thought everyone felt the way I did in their bodies but I was just not as strong as other people.
Despite doing gymnastics, cheerleading, coaching, school work (which I always did laying down), being in a sorority, being a nursing supervisor, etc... I am telling you some of the hardest times for me was when I had to put on the brave face during family events. I dreaded them. Standing around talking to people, eating a big meal, and then trying to be sociable and clean up after the gathering was excruciating. My parents thought I was lazy. I constantly felt like I let my family down.
Throughout my life, my siblings thought I was faking when I got sick all the time. My friends thought I was skipping school. Doctors told me I had anxiety and depression. I was sent to a shrink and they'd discharge me the next day. No matter what I did, my conclusion was that I just needed to buck up and be like everyone else. I never EVER felt good enough.
I want to encourage you all to fight, but learn your limits. I want you to find a support system. It's so important. And most of all, I want you to know that you're not alone. And if anyone or anything is hindering you in your life, like a crappy doctor or a judgmental friend....drop them like a bad habit. This is your life we're talking about. You have to learn how to cope with and overcome stressors in your life so they don't physically ruin you. And you have to learn how to live your life to fullest extent that you can...and not beat yourself up when you can't do certain things.
Also just so you know...because I did fight (but didn't know my limits), I was able to be the captain of my cheer team in high school, did college cheer, was a competitive gymnast, coached gymnastics, joined a sorority, and got my bachelors in nursing. I was the supervisor for several units on night shift and was a good nurse. The key part of that statement is that it is all past tense. Because I didn't know I had POTS, I didn't know my limits AT ALL and it got me in serious trouble too many times.
Then starting in 2010, I ended up getting in a series of 5 car incidents in 2 years. Now I'm unable to hold down a job, and had to move 6 hours back home. If I had known....I wouldn't have gone to work the night of my first accident. I wouldn't have smiled through my shift with tears running down my face. I was in so much pain but I had to put that aside and do my job. And every accident, I did the same thing. Needless to say, I ended up bedridden and finally diagnosed after fighting tooth and nail for answers. And when I got diagnosed, everyone at work thought it was a BS diagnosis because NONE of us had ever heard of it. My boss told me to get my anxiety under control. I had no support. I was living alone. I fell down my stairs so many times and just writhed in pain, alone. Eventually I had to crawl to my cell, but I was too proud to call my friends and ask for help. I didn't want help. And I didn't want anyone to know I had this condition.
I didn’t want anyone to see me weak. I’d gone to extensive lengths most my life to hide the fact that my body was weak. My friends called me a gym rat. I was terrified of not being in shape because I knew how bad all my symptoms would get if I missed just one workout. And with every cold, injury, etc. it was getting next to impossible to recover. It finally got to the point where the chronic pain and POTS completely took over. I was always trying to overcompensate. After the diagnosis, I tried my old tricks to beat this before anyone knew anything. But the charade is finally over. My body is weak. Some days, rolling over in bed is hard. Having a conversation is hard. No part of my body is exempt from the effects of POTS. My body is weak but my soul cannot be touched.
God grant me the serenity to accept the things I cannot change, the courage to accept the things I can, and the wisdom to know the difference. So again, please let my mistakes help you to make the most out of your life. And know that I'm here to help in any way I can.
POTS and My Morning Routine – Lindsay, age 35, California
At 6:30am every morning by alarm blares my chosen alarm ringtone – the song from The Lord of the Rings movie. I feel it adds a level of sophistication to my otherwise dull morning. If it’s supposed to make babies smarter if you play instrumental music, who knows what it could do for my brain fog??
I’m not usually asleep when the alarm goes off at 6:30. What time I wake up each morning depends on whether I had a particularly insomniac night. Some mornings I have been awake for hours by the time the dreaded song pierces my ears. Others, maybe just half an hour. More than anything, the alarm signifies it is time for my first medication of the day.
Mornings can be particularly difficult for people with POTS. After many hours without anything to drink, we wake up dehydrated. I always keep a bottle of water next to bed and take a drink every time I wake up throughout the night, which usually occurs multiple times. After I hit the snooze on my alarm at 6:30, I chug whatever is left in the water bottle.
Even after the water, I can’t get up right away. Trying to stand before I’m ready makes me dizzy, lightheaded and on the brink of fainting. So, I usually spend a few minutes just sitting up in bed. I’ve found it’s a great time to sneak in a few Candy Crush games on my tablet.
After a few minutes I “practice” getting up. This involves standing up next to the bed for a few minutes, then sitting back down. I repeat this a few times to give my body a chance to adjust to the postural changes. Once I’m finally up, I go to the kitchen and take medication.
Next comes the biggest challenge of my morning: the shower. Prior to POTS, I loved a good hot shower. I would stand and face the hot spray while its near-scalding temperatures would leave a large, red circle of burning flesh on my stomach. Now, my showers are at the opposite end of the spectrum. Heat causes blood vessels to dilate and makes it more difficult for my heart to pump blood back up to my chest, arms and head. For people who already regularly experience lightheadedness and dizziness, a hot shower can be a dangerous place. While a cold shower isn’t the most pleasant sensation, it’s great encouragement to keep my showers short.
On particularly symptomatic mornings (or mornings where I realize my legs are overdue for shaving), I have to sit on the floor of the shower. Shower chairs are available for people who have difficulty standing in the shower; however, they just aren’t practical for our tiny condo and bathroom. Nothing makes you realize it’s time to scrub your shower more than having to sit your naked butt down on it.
After the shower, I dry off and sit down on the bathroom rug for a few moments until the white spots in my vision disappear, or at least until I can see the kitchen through the spots. Next…breakfast time!!
I’m often nauseous in the morning and am not interested in food, but because my next round of medication doesn’t go over well on an empty stomach, I usually force myself to have something. These days, it’s a couple spoonfuls of plain applesauce. I also have a hot mug of chicken broth, since the sodium helps me to retain fluids. Not the same as a big plate of bacon and eggs, but it doesn’t make me vomit…..so there’s that. Applesauce and chicken broth – breakfast of champions!
After lying down on the bed for a few minutes to catch my breath, I head back to the bathroom to dry my hair. I have naturally wavy hair, but it’s that in-between curly and straight hair, reminiscent of Diana Ross, which becomes a giant frizzy mess if I don’t do something to tame it. But hair dryers are hot and usually involve a lot of standing. I’ve discovered that sitting on the bathroom rug while I hold the hair dryer does have its perks (cough, Candy Crush, cough).
Once my hair is dry and (somewhat) presentable, I stand in front of the bathroom mirror and put on makeup. Makeup is one of those “standing-only” activities for me, as the mirrors in our condo are standing height. I’m not a heavy makeup kind of girl – I prefer the natural look (and, if I’m being honest, I don’t know how to do fancy makeup). So, makeup application probably only takes about 5 minutes. However, standing that long in the morning makes me dizzy, and applying makeup while dizzy leads to me getting job offers as a clown. Not recommended. So, I take a quick seat for a minute or two break half way through applying makeup.
Finally, I get dressed for the day. I try to think about what I’m going to wear while drying my hair so I don’t have to spend too much time standing in front of the closet rummaging through my wardrobe. The ease with which I get dressed depends if it’s summer or winter. I don’t usually wear compression socks during the summer as I usually wear skirts to work, and I haven’t found an acceptable way to wear compression socks with a skirt without looking like my grandmother. However, during the winter, the compression socks fit nicely under pants, and no one is the wiser.
Compression socks are one of those double-edged swords where I haven’t yet decided whether they’re worth the effort. If you’re not familiar, compression socks are special hosiery that compress the legs in order to increase blood circulation. They are often worn by runners and the elderly – Gramma and I have matching pairs – or anyone who may experience blood pooling. Because they are tight, they are not the easiest things to put on. Ladies, it’s like trying to put on a pair of skinny jeans that are two sizes too small. I have to lie down to try to get them on, and work them up inch by inch. Because they require so much energy, I take a quick snooze if I have a few minutes, and then swallow the rest of my medication. Finally, on particularly symptomatic mornings, I’ll check my pulse and blood pressure to make sure it’s safe to make the walk to my car and leave for work.
To make a long story short, I apologize ahead of time for anyone who may run into me in the morning.
Check out more of Lindsay's writing about her experience with POTS.
My Son’s Amazing Recovery from POTS - Bobby, age 13, Florida
My son has been extremely ill for three years. Bobby’s medical problems started with GI issues and he was diagnosed with Eosniphilic esophagitis and gastroenteritis, as well as elevated mast cell number in the GI tract. He ended up needing a feeding tube, but eventually he was unable to even tolerate amino acid formula. He continued to have constant stomach pain at level three. We decided to start adding in foods back into his diet because his pain no longer seemed food related. Bobby can now tolerate all foods again. While this was fantastic news, my son’s health continued to deteriorate.
Bobby began to have low blood pressure, elevated heart rate, and dizziness. His symptoms included severe nausea, stomach pain, muscle and joint pains, headaches, neck pain (and eventually could barely hold his head up), vomiting, diarrhea, constipation, slow gastric emptying, problems swallowing, dizziness, knee pains, tremors, tingling in hands, pale grey complexion with very dark circles under his eyes, visual problems (jumping, blurred, sometimes seeing stars), horrible acid reflux that was not controlled by medication, chronic all over pain, insomnia, brain fog, attention problems, inability to regulate his body temperature and other autonomic malfunctions. My son was diagnosed with POTS, a form of dysautonomia. He had been a very athletic, healthy child who played baseball and basketball since he was five years old. He ended up in a wheelchair and was barely able to leave the couch. He had been in the gifted program at school, but could no longer attend. Worse, Bobby could no longer read due to visual disturbances.
This summer, my son was finally diagnosed with Ehlers Danlos Hypermobility type. This was the missing piece of the puzzle that connected all of his diagnoses. Although his symptoms were consistent with his dysautonomia diagnosis, I felt that his continued to rapid deterioration and extreme symptomology meant that we were still missing something. My gut was telling me that there must be something else. So, I began to research all associated conditions of Ehlers Danlos that were consistent with his symptoms and found Chiari Malformation. This is where cerebral tonsils of the brain sink into the spinal column and compress the tonsils and block spinal fluid flow.
I had my son’s MRI looked at by three different top hospitals. All said that he did not have chiari malformation - everything was normal. I sent my son’s MRI disc and records to The Chiari Institute on Long Island, NY. They diagnosed Bobby with Chiari malformation, a retroflexed odontoid, and Cranial Instability. He needed brain surgery to fix the brain compression in two places. His brainstem was being compressed – this controls all autonomic function in the body. Could this be the cause of his POTS? Is this why the medications weren’t working? It was all beginning to make sense.
My son just had the surgery. It was a difficult recovery, but ALL of his symptoms are gone. No more constant stomach pain. No more nausea, dizziness, etc. He can eat anything he wants to now! His vision has come back and his brain fog is gone. He can read again!! Bobby will be in physical therapy to regain strength and range of motion for awhile, but he is looking forward to going back to school and being a kid again. Our amazing neurosurgeon, Dr. Rekate saved my son’s life. He said that once he repositioned my son’s skull in surgery, they could see immediately that the nerve impulses improved. His MRI images now show correct positioning of the brain and free flowing spinal fluid. We have discontinued all medication except for zyrtec and omeprazole, but we are hoping to stop those soon as well. I hope Bobby’s story will encourage all of you to keep searching for answers!
Friendship and Chronic Illness - Nancy, age 20, United Kingdom
Kids and teens only assume serious health problems come in the form of cancer unless they live with or around people who have other illnesses. The most anyone else my age has experienced health wise is a bad cold that goes away after a week or sickness from too many drinks on a night out. They soon forget this saga ever happened and go back to their normal schedule, but that doesn't happen for people who have chronic illnesses. The process doesn't stop for us and we are usually confined to our bedrooms and homes for days, weeks and months on end before we can venture out again for a day.
A doctor’s favorite question at appointments is whether you keep in contact with friends. I am always incredibly rational and respond yes, but I also explain I understand how everyone has their own lives to get on with and that I don't want nor do I expect their lives to revolve around me. But at times, I wonder if friends really understand the impact they could be making if they decided to check up on someone who is chronically ill. It would probably make our day a little brighter. I know that if it was me, I wouldn't desert a friend who had an illness. Maybe I can say that because I have been in this position for many years and felt isolated and alone. Maybe I know that those who are chronically ill really need a friend at times because I lost so many. A friendly face and someone can give them a bit of normality. My two best friends know when I need my own space to deal with my pain and never put any pressure on me to do things. When I have a rare trip out with them, they cater to my needs and take some of the extra pressure off by offering to do the things they know I find draining. They are amazing and I am incredibly grateful for their patience, friendship and for sticking with me through a difficult period.
I have lost the majority of my friends. I can count my friends on one hand, and they are extremely good to me. I can remember having so called 'friends' who used to think I was making excuses and didn't want to spend time with them. They didn’t believe me when I told them I was too poorly to leave the house. This used to upset me so much that I isolated myself even more to please everyone.
I would obviously prefer to be surrounded by people who have my best interest at heart and actually want to spend time with me, such as my handful of friends. It does hurt when you see big groups of friends and feel worlds apart from those people who you once knew. I do often feel sad at how lonely this illness has made me feel. I don't feel normal, I don't feel I have much confidence around strangers, and I certainly don't feel young in myself, my mind and my lifestyle. Sometimes I wonder where I would be in life if I didn't have this illness. I wonder if I'd still have loads of friends or would've learned the hard way whether they were true or not. I found out from a young age who my true friends were, it was a hard process but maybe it helped me cherish the friendships I have had for nearly 10 years.
I started to realise that because this illness would be with me for the rest of my life, I had to be honest with those close to me and let them know that I couldn't do things like a normal person my age could and should be doing. As my health has deteriorated with age, my friendships have dwindled from medium sized groups to just a few people. But these are the people that have shown they really are true friends, have been there for me since the beginning of diagnosis, and are worth the extra pain that may come from spending time with them. The one thing I am proud to have overcome is that I no longer see it as scary or daunting to spend time with them. I used to go to extreme lengths to put anyone off coming to visit me because I never thought anyone could understand how much pain I was in. I didn't want to see anyone and I didn't want anyone to see me looking so ill. I didn't want to let my guard down and felt the need to protect the false state of 'normality' I had created growing up with these friends. I didn't want anyone to know how difficult things had become for me but I know now this wasn't the correct way to handle things, I only made it harder for them to understand and grasp that I was chronically ill.
Things have changed now, my friends come round and see me in all my ill glory, in my usual uniform, as we joke, which is usually some comfy pajamas and fluffy socks curled up with a blanket on the sofa in my front room. Seeing me like that is normal (I hope). I don't hide myself in makeup and put on the act on like I once did. They understand my pain, the basics of my health problems, and my limits. Most importantly, they become a great distraction for an hour or two and make a dark day of pain a bit brighter. Sometimes they ask questions about how things are going health wise, sometimes they don't. I wouldn't want to force the topic of my health on anybody, but I also wouldn't want to give a false impression that things are fine and dandy.
Friends do come and go, more so when people are ill and more isolated from friendship groups. Unable to meet up often and unable to join in because of pain it can be a lonely process. However, it also does highlight the people who truly care, these are the people worth your love and friendship.
So I urge you, if you are reading this post and are not ill yourself, but know of somebody who is, please make the effort to text, ring or go to see them. Don't push them away just because they don't fit the criteria of somebody else your age. Don't isolate them because they can't do the things you do. Instead go round to their house and sit and talk with them for a few hours about anything and everything. Support them if you want to or be the distraction they may be craving. More importantly, let them know you are there for them. Enjoy their company and value their friendship, despite them not fitting into the normal friend category.
Click here to read more of Nancy's thoughts on POTS.
The Daily Struggle with POTS for a Pre-Teen: Lily, age 12, Ohio
Within a month of turning 10, Lily developed a fever, sore throat, headache, and crushing fatigue. It was April of 2012, and little did we know that our lives would be forever changed. After six weeks of doctor’s visits, she was finally diagnosed with mononucleosis. It was the end of fourth grade, and she missed field trips and a fair amount of school. By July, Lily was about 70% of normal, but was still fatigued and had pain in her upper left quadrant. Her abdominal pain caused her to curl into a ball on the floor for 5-10 minutes until it passed. We eventually learned that an ice pack would relieve this pain, especially when it occurred after eating.
By August, Lily was more fatigued than ever. It was almost time for school to start again, so off we went to the doctor. The pediatrician recommended seeing a specialist. That first appointment was particularly memorable because as the doctor was touched Lily’s lower back, Lily jumped. That light touch was painful, and she had never noticed it before. That was the beginning of lots of blood draws, x-rays, abdominal ultrasounds, back and hip MRIs. All normal. By October, Lily’s hypersensitivity to touch had morphed into neuropathic pain in both legs from the hips down. Sometimes Lily described the pain as bombs going off inside her legs. Sometimes it felt like pins and needles. Sometimes it burned. There was a time that her leg pain was so bad that she walked with a significant limp and required assistance to walk to the bathroom. Those were dark days. Her pain changes over time, but is intense and has been a nearly constant companion for more than two years.
Lily’s list of symptoms had continued to grow. She would stand, twist up her face, and grab her head. Before she said anything, it was obvious that another headache had been triggered. Her abdominal pain occurred daily, but luckily only first thing in the morning and after she ate. She had crushing fatigue, and would sit for an hour without even wiggling a toe. It’s hard to describe, but she had very little muscle tone and sank into her recliner more than usual. She didn’t lift her head to watch TV or read. She had hot flashes. Chills. She would flinch if a piece of paper touched her legs. Lily struggled with nighttime wakefulness. She became sensitive to light and sound. We got special permission for her to wear sunglasses in the classroom. Some of her teachers turned out the fluorescent lights the hour Lily was in their room. She had an extra chair to use to put her feet up. Lily was in 5th grade when we got a 504 medical disability plan for her at school. In one nine weeks, Lily missed 42 days of school (out of 45 in the 9 week period). Through it all, she did not complain. She smiled and tried to leave her illness and pain for the imaginary worlds found in books, movies, and video games.
Lily was finally diagnosed with POTS after nine months of illness and just as many specialists. I rejoiced because I thought having a name for her illness meant that we could treat it and that our lives would return to some level of normalcy. I was wrong. She has been treated by pediatric POTS specialists for two years, and is not significantly better than she was at the time of diagnosis. We have tried medications, pain specialists, pain psychologists, physical therapy, exercise regimens, meditation, and the elimination diet. We have followed every instruction. Still, Lily is struggling with POTS. Just after her 11th birthday, we bought her a wheelchair. At age 12, her course load in middle school has been dropped from six academic courses to three. She struggles to attend even one or two classes per day. We have arranged for a tutor to come to our home to make her studies more manageable.
We continue to look for an underlying cause for Lily’s POTS. I know in my gut that something else is going on. I will not rest until I help my daughter. She deserves a chance to actually go out and live her life, and I have every intention of giving that to her. I hope that we can join with other families to make our voices heard, raise awareness, and find a cure for those we love! Let’s all Stand Up to POTS!
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