Almost everyone experiences back pain from time to time… but what about those of us that live with degenerative disc disease, sciatica, nerve pain issues etc?! It can be extremely difficult to focus through any type of chronic pain, and working with chronic back pain can be near impossible at times. I’ve been living and working with chronic back pain since a car accident in 2013, so I’m sharing a few of my best tips.
Listen to Your Body
No pain, no gain? Nope, that doesn’t apply to me anymore! I’ve learned the hard way that pushing through the pain isn’t a smart choice for me most of the time. While I try not to focus on my pain, I cannot ignore what my body is trying to tell me. Keeping a journal or notebook can help you to understand what triggers cause your pain to flare up. What were you doing the day BEFORE a sciatica flare? Have you been sitting in a new position? Sleeping differently? Writing down your day to day activities can help you to spot triggers (especially if the pain is a newer issue), and to avoid them in the future.
Move frequently. I’m not suggesting you walk 10 miles on your break, but rather take more frequent breaks to gently move your body. If you’re lucky enough to work from home, this will likely be easier than if you work in an office. Hopefully, your employer will understand that frequent breaks will help to keep your back from seizing up! I’ve found that I shouldn’t sit for more than an hour, which is why I make it a point to get up, stretch, and walk around my house a bit. Take a call while standing up, walking slowly, or doing some exercises that you learned at physical therapy.
Make Your Environment as Comfortable as Possible
Create a work environment that works for you! If you’re lucky enough to be self employed or work from home, this is certainly easier. You’ll often find me working on my laptop on my recliner, with my favorite supportive pillows and a heating pad. Investing in a supportive chair and furniture can also be a huge help. A large therapy ball is also a great affordable tool to switch out with your desk chair occasionally. Having good lighting so you don’t need to lean forward or squint at your screen (effecting your posture) is also extremely helpful!
Life is hard enough as it is, try to make things easier on yourself! I always have heating pads, ice packs, a foam roller, a lacrosse ball, a yoga mat, and my various favorite comfort items nearby. If I put them in a closet or a hard to reach area then I am not as likely to use them. Yes, my husband used to find it annoying, but he’s gotten used to me working from home and all of the things that I need to make it possible! Also, I strive to keep my desk and office area free of unnecessary clutter and paperwork. As much as I love cute knick knacks, they only make for more work for cleaning your space.
Adjust your expectations. Note: I said adjust, not lower (my therapist tells me that our words have an impact on our mental health, and lowering our expectations sure sounds depressing). If you’re able to set your own schedule and goals, make them manageable for what YOU want to accomplish. It’s easier said then done, but try to stay in our own lane! If you have quotas, clients, or deadlines to meet that are set by others, be open and honest with them about your capabilities. Let your employer know that sometimes your pain flares and it is beyond your control. I’ve had to share my health issues with my clients and most are far more understanding than I had feared they would be. Plus, I work hard to set realistic expectations for not only my clients, but for myself.
Prioritize ruthlessly. Can I write three blog posts in one day? Nope, probably not. Can I prioritize work that has to be completed today first, leaving emails and following up to messages for later? Yes. Not only do I prioritize my to-do list every day, I also prioritize my self-care. Massage, acupuncture, chiropractic, and other medical treatments help keep my chronic pain at a ‘manageable’ level. They’re also expensive and sometimes exhausting. Personally, I am lucky enough to be able to work my schedule around the appointments that I need to prioritize. I also have learned to adjust my spending to accommodate these expenses as well. Would I like to go out to dinner more often or drive a newer car? Yes, but those things won’t improve my quality of life as much as my self-care expenses do.
Most importantly, try to treat yourself with kindness and give yourself the grace you’d give your friends. We cannot be superman or superwoman, because they are fictional characters. No one can do it all, and that is okay!
Jenna Green is the creator Full of Grit & Grace, a blog and community for people who cannot work a traditional 9-5 job. She’s an outspoken spoonie with Multiple Sclerosis, Dystonia, Degenerative Disc disease, chronic pain, and a whole lot of grit. She strives to help others (and herself) to learn to give themselves grace while going through tough times. She’s a dog mom, auntie extradonaire, fashion lover, and (mostly) optimist.
For those with “invisible” illness, it’s difficult to find someone who believes you’re sick – not just depressed, not just anxious, not just tired – but sick.
These nonbelievers can be siblings, best friends, spouses,
children, or acquaintances, but the ones who leave us most helpless are the
doctors. Physicians who dismiss our illnesses make us vulnerable to
exacerbation of symptoms and sometimes irreparable harm.
Maybe you know what I mean…
The doctor who believed me
You were never sick; always strong, productive,
hopeful. Now here you sit in one more exam room. How many has it been?
How many white-coats have pressed a stethoscope to your chest, shone a light
into your ears, nodded and wrinkled a brow in response to your long, long list
of complaints? How many times have you sensed an internal eye roll? How many
times have you witnessed one?
But then it happens. You find the doctor who really looks at
you. Who nods, not merely to seem attentive, but to acknowledge that she gets
it; understands what you’re saying; how you feel.
That happened for me nearly five years ago.
Lyme disease can take its time before finally making a stand. Mine was like that. Symptoms came and went for years. I didn’t have the experience of seeing a long line of physicians, but I should have. I was just too hard-headed to go. As a nurse, I worked with doctors and didn’t wish to be at their mercy any more than I already was. So, I dealt with it.
Okay, I ignored it. I did my level best, anyway. I ignored
the joint pain, the panic attacks, the sleeplessness, the flu-like feeling. The
soles of my feet were like raw ground meat, so I bought shoes with more cushion
and sat down more often. My brain, eyes, and ears didn’t like light or noise,
so I wore earplugs and stopped going to movies and malls. I ignored it all
until I couldn’t. In my defense, it’s tough to ignore two weeks of vomiting,
chills, fever, and diarrhea.
Blaming parasites for my symptoms
At the time, an intestinal parasite-harboring bagged lettuce
was in the news. I told my doctor that was likely my problem. Accepting my
diagnosis, he prescribed the antibiotic I requested and seemed happy to spend
no more than five minutes with me, order a single lab test, assure me he was
impressed I’d managed to stay slim, and remind me to get up-to-date on all my
“woman stuff.” Which I did.
Following that intestinal inconvenience, I began to decline
until pretending became too much. My mind was going. I couldn’t remember the
way home from work, how to get there, or why I was even in my car. I started
trying to open doors with my cell phone, turn my dryer on with the light
switch. My ears were ringing, my head hurt, the right side of my face was
sliding downward. My rib cage burned; my muscles twitched, ached, and jerked. I
could barely walk. Everything either hurt, malfunctioned, or both.
But it may have been the fatigue that finally pushed me over the edge. Maybe it was the day I fell asleep in a patient’s home while interviewing her. Or, maybe it was the second time that happened. I’m stubborn and that’s not a symptom of my disease.
Luckily for me, the iron pill prescribed for my
nine-point-something hemoglobin made me sick. That tiny, forest-green tablet
bullied me into action and through the right door.
Finally being listened to
My new doctor’s practice had a name – not just doctor
so-and-so. I won’t give the name here. I’ll just call it True
Health. It was in an old brick building, in a tiny town I’d been to,
maybe once in my life, but I had a patient visit there, and afterward saw the
sign. I thought it was a health food store and decided to look them up, hoping
they’d have an iron supplement I could endure. Turns out they did – and a whole
I’d never heard of functional medicine. Entrenched in the
industry we misguidedly call “healthcare,” “ill-care” was
what I actually did for a living – managed peoples’ illnesses; tried with pills
and pills to keep symptoms at bay. It’s all I knew. But since functioning had
become a problem, I thought I’d give this new approach a try.
Getting the diagnosis Lyme disease
Seeing a functional medicine practitioner is something else.
Before your first visit, you complete a two-hour questionnaire – much of it
consisting of inquiries into your bowel habits. The idea that my first visit
was to last an hour and a half was jaw-dropping, but it was the first fifteen
minutes that left me stunned. Turned out he was an expert in the disease, I
didn’t know I had. When he said, “I think you have Lyme disease.” All
I could do was repeat, “Lyme disease?”
Then he handed me another questionnaire – this one,
I passed with a very high score. Like most healthcare
providers, I knew nothing of Lyme. I’d hobbled across the street and into his
office that day, burdened by thoughts of Lupus, Multiple Sclerosis, Alzheimer’s
– these were among the possible diagnosis I expected to hear. When I didn’t, I
thought I’d gotten off easy. But, as I said, I didn’t know anything about Lyme.
I recall bits and pieces of that day, but his words, as he
left the examination room, imprinted on my mind. I have held on to them for all
these years, through unspeakably difficult days. His hand on the knob, he
turned back and said, “You know, a lot of people want to make you feel
crazy for what you’re going through, but we don’t want that for you. We just
want you to get better.”
That hope, expressed by someone who had the ability to help me realize it, pulled me out from under the fear. Until that day, I hadn’t told anyone how I was feeling head-to-toe. I’d tossed out phrases like, “I’m so tired,” or, “I feel achy,” always shaking my head, baffled by my body’s failings. But how could I begin to list the thousand and one complaints in casual conversation? Even I thought I was losing it. Even I wondered if I just wanted attention or to get out of work. Maybe I didn’t want to hear the assurances that these things happened to women of a certain age or to women because they are, well, women.
There were many reasons I kept it to myself, but when he
said that, I felt something break open; sorrow and relief rushed in together. I
found confusion and clarity, peace and uncertainty. I was a jumble of emotions,
but it was the comfort and compassion, the understanding and assurance – all
the things a sick person needs, things I hadn’t yet admitted to needing – I
found those things in abundance at that place, enough to deal with what lie
The doors are gonna close…
That place will soon be gone. My doctor’s practice closes
the end of the year.
The word I’ve heard most from his other patients has been
“devastating,” I concur. It is a blow, a punch in the gut. The day I
found out, I sensed a snap, the cord from life raft to ship had been cut.
Adrift, unsure, alone, we all panicked; found ourselves floating in a fog with
multiple, but untested, paths on all sides.
What’s the big deal? Find another doctor people said;
recommendations filled my message boxes and social media feeds. But those of us
with Lyme know some things most don’t. Someone with an accepted,
well-researched condition might think finding a great doctor isn’t too
complicated, but Lyme is, in a way, illegal. Our doctors are few and far
between because the risk of giving us as many antibiotics as someone with —
say acne — is high. Lyme doctors can be shut down by a complaint from an
insurance company or the health department for “over-treating.” They
have lost their licenses because of us.
So, we all scrambled. We googled; talked back and forth.
“Have you heard of so-and-so in such-and-such town? His he any good?
Does she take insurance? Does he treat with antibiotics, herbals, or both? How
much is the first visit? My friend saw that doctor. He was horrible – she
almost died! Ugh, that’s three hours from me. Bleh, that’s a six-hour drive.
First visit is how much?! Yikes!” On and on it went, all of us
forced to begin again or give up.
My safety net, gone.
My doctor was a safety net. I had settled in and expected to
stay until I was well. When his doors close, I must start over. He won’t be the
only one out of practice. It’s been a long time since I’ve had to tell this
tale from the beginning; since I’ve had to complete a new patient form or use
my GPS to find my healthcare provider.
It’s been four and a half years since I’ve had to feel
nervous; uncertain about whether the person sitting across from me had my best
in mind. I don’t want to wring my hands and avoid eye contact while I call out
my myriad of physical aches and pains, my neurological disturbances. I dread
sitting alone in a foreign and sterile room, unable to concentrate on the book
in my lap, instead staring at soap dispensers, tissue boxes, sinks, and
paper-covered exam tables — anything to look casual and relaxed, to not be
caught wide-eyeing the door when my new practitioner walks in. Like a weathered
sea captain taking sailing lessons or Jack Niklaus signing up for golf camp at
the local YMCA, I don’t want to be a new patient because I am an old,
New patient visits cost a lot of money. You have to pay the
hefty first-visit price, adopted now, by most Lyme-literate MD’s. Some of them,
at rates between five hundred to a thousand dollars, or more. Since there is no
established treatment protocol for Lyme, your new doctor will try things —
supplements, herbals, compounded capsules, untested intravenous therapies. All
of these things will be costly, none will be covered; your doctor will not
accept insurance. You’ll pray no one else in your family needs medical care.
A new physician will, and should, run tests. Such a
multitude of complaints warrants a broad array of diagnostic procedures. If
your previous results are not recent, or this doctor prefers a different lab or
method, you’ll be subjected to many needle sticks and scans of things. You may
be referred to specialists until every week of every month you are committed to
a doctor’s appointment. You’ll find ways to make it bearable – treat yourself
— a grown-up version of the proverbial post-doctor lollipop. When I see my
primary care, I’ll swing by a favorite upscale thrift store; when I see my
neurologist, I’ll get a smoothie, my thyroid doctor, a gluten-free, grain-free,
sugar-free, dairy-free lunch that I’ll eat beside a nearby lake.
If you choose a doctor not trained in Lyme disease, you’ll
save cash but have a lot of explaining to do. As you relay your symptoms, your
new doctor may become alarmed. He may wonder why you haven’t already been to a
rheumatologist, neurologist, endocrinologist, allergist, sleep specialist,
physical therapist, and on and on. She may be puzzled by your cavalier
demeanor, the way you shrug when describing the sudden numbness to the right
side of your body, or your occasional loss of vision in one eye. He may
attribute your neck stiffness to poor sleep posture instead of a coinfection
like Babesia or Bartonella. Same for your night sweats, those will be, most
likely, if you’re a woman, due to womanhood. She will not have been taught to
consider infectious disease as the root cause. You may have to bring
documentation – peer reviewed studies that demonstrate the true nature of Lyme,
that explain it as a collection of infections, not just one; the way it persists
in the body, an ongoing, active contagion lying in wait. You’d better bring
this paper work wrapped in humility and pray he is willing to learn from you.
Where do I go now?
Being long-time sick, has worn away some of my stubbornness.
I am giving in, making a list of those after-doctor treats. I know I was
spoiled to have stumbled upon the right doctor that day; to have had one
provider who understood he couldn’t send me to specialists who didn’t believe
in the thing that was making me sick. I was blessed, on my second attempt, to
find the help and wisdom I needed to get better. I know that what’s ahead for
me is what many with my condition have tolerated their whole lives, and so, I
find myself again, breaking open on the inside; once more a jumble of feelings.
Hope will show up, but right now grief wins the day. I am succumbing to a path
in life I did not and would not have chosen.
We all know the comfort of familiarity, of coming home after
a hard day’s work, a funeral, a long trip. We see our favorite chair, our pillow;
tune in to the sounds – the ones we don’t always notice because they’re always
there, a refrigerator’s hum, a clock’s tick, a dog’s soft snores. A doctor’s
office can be a place like that when you’re sick for a long time. After a hard
month of pain, memory loss, shortness of breath, exhaustion, a familiar
caregiver can be a welcome sight, can release a contented sigh borne of trust.
It can be a place where you anticipate, with relief, the opening of an exam
room door; where you know you’ll leave encouraged.
Once you know a doctor is listening; that he hears you and
cares, you let yourself believe he wants what you want, to see you walking tall
and strong, hiking the old trails, pumping the pedals of your bike. And so, you
tell him your story. You start at the beginning and each visit you speak to him
the middle, all that’s happening in your right-now. You’ve no doubt he will be
with you at the end, bringing this affliction to a resolution of wellness.
But his role has ended. He has stepped out of your story,
and you’ve no choice but to bring in a replacement; to put on the brakes, slip
into reverse, and start over.
I’ve put my life in the hands of my doctor
We’ve all heard people say it, that they put their lives in
the hands of a doctor. I did. Not consciously, but in that room for the first
time, I lay down the weight of all I used to be and now was not, could not; all
I wished to be and do again. And he had willingly picked it up; lifted my
burden. In that place, I had a safe room where someone wanted me to tell what
hurt, where I would be validated; find healing, a place I could express my fear
that I would forever be unable.
As his practice ends, mine starts over. I’m not sure if this
will be the commencement of a whole new marathon, or just a long, steep incline
in the middle of the same endless route. But I’m breaking out my equipment: My
long list of medications and symptoms, treatments that worked and the ones that
failed. I don’t feel ready, but I’ll narrate, once more, the longest story of
my life and hope that my new doctor will really, truly just want me to get
Amy Estoye is many things —
wife, mother, sister, daughter. She is a writer, reader, hiker, cycler,
gardener, and photographer. She has had Lyme disease for many years and
now shares her story with others in hopes of creating community among sufferers
as well as educating those who love someone with Lyme. You can connect with her
on social media and find out what it feels like to have Lyme disease on her
Dysautonomia is difficult to pronounce and even more difficult to live with. Before I can share how dysautonomia has affected my life I should explain what it is. Dysautonomia is an umbrella term that covers any condition that is caused by a malfunctioning autonomic nervous system (ANS). There is no cure for dysautonomia. [If the dysautonomia is caused by a disease, curing the disease may return the autonomic nervous system to normal function but this is not always the case.] The ANS controls the bodily functions that are performed unconsciously. To complicate things further, the ANS comprises both the sympathetic nervous system (SNS), which regulates bodily functions related to the “fight or flight” response. and the parasympathetic nervous system (PNS), which regulates the functions when the body is in the “rest and digest” state. Both of these components of the ANS are constantly active at low levels to maintain an equilibrium within the body.
There are more than 15 types of dysautonomia affecting around 70 million people worldwide. The two most common types of dysautonomia are Neurocardiogenic Syncope (NCS) and Postural Orthostatic Tachycardia Syndrome (POTS).
NCS, which affects tens of millions of people worldwide, disrupts functions performed by the ANS that counteract blood pooling (which is caused by gravity pulling blood downward). With NCS these processes do not function correctly, resulting in temporary loss of circulation to the brain which causes fainting, also known a syncope. As with most types of dysautonomia, NCS has a spectrum of severity. Many people are able to manage the symptoms on their own by avoiding known triggers such as dehydration, stress, and excessive heat.
POTS affects between 1 and 3 million people in the United States alone, 80% of whom are female. POTS causes greatly increased heart rate when a person moves from lying down to sitting, or sitting to standing. The symptoms are even more severe when a person goes directly from lying down to standing. Most people with POTS (many of whom refer to themselves as “potsies”) know that they should under no circumstances go quickly from being horizontal to being vertical. Doing so is so problematic that one of the more common tests used to diagnose POTS is the tilt table test.
People with POTS often also experience one or more common symptoms, including but not limited to:
Tachycardia (rapid heart rate)
Shortness of breath
Extreme sensitivity to temperatures
One of the reasons that there are so many symptoms of POTS is because it is very often co-morbid with other disorders. Some researchers believe that POTS is a genetic condition while others think that it is has autoimmune cause. Many people affected with POTS have an autoimmune disease; those who do not may have high levels of auto immune markers.
Not all cases of POTS can be linked with autoimmune problems, however. It is thought that POTS can also be caused by a variety of conditions and incidents including trauma, surgery, pregnancy, a variety of infections, chemotherapy, heavy metal poisoning, toxicity resulting from alcoholism, and diabetes, to name a few. Because of the vast number of potential causes for POTS, the variety of symptoms, and a general lack of awareness (even within the medical community) the average diagnostic delay for a patient with POTS is 5 years and 11 months. More than a quarter of these patients have to see more than 10 doctors about their symptoms before being diagnosed with POTS.
Now seems like a good time to remind you that POTS is the second most common type of dysautonomia and the average amount of time it takes to get a diagnosis is still over half a decade.
Okay, now you know what the autonomic nervous system controls and therefore what functions dysautonomia has the potential to disrupt. I have talked to a lot of people with different types of dysautonomia and no two people have the same experiences. Mine has been a pretty wild ride.
While I have had symptoms of dysautonomia since I was about 15, very nearly half of my life, I did not learn about dysautonomia until June of 2018. Most of my symptoms never presented severely enough for me to seek medical attention; some I didn’t even know were unusual experiences. I wrote off many problems as me being clumsy or lazy or weak or as a consequence of being overweight. I also have a diagnosed anxiety disorder so the more severe symptoms I was experiencing I attributed to that. Many people with dysautonomia are misdiagnosed with an anxiety disorder because many of the symptoms can look like a panic attack. I was not misdiagnosed–I absolutely have an anxiety disorder. I just also happen to have dysautonomia.
My therapist, while she is admittedly not qualified to diagnose dysautonomia, was the first person to suggest that I should probably talk to my general practitioner about the possibility that I had it. I had been telling her how frustrating being startled is because adrenaline rushes are so painful, like lightning shooting through the top of my head and branching down my spine and sometimes arms and legs depending on the severity of what scared me. I was 29 years old when I learned that adrenaline is not supposed to hurt. She opened her laptop and started to ask if I experienced certain symptoms. At some point I had experienced almost all of them. It was like winning bingo in purgatory. She told me that I should do some research, and maybe talk to my dad (who happens to be a non-clinical neurologist), and talk to my doctor.
That presented a new problem. I hate going to doctors. I didn’t even have a family doctor. I spent over an hour calling offices before I found a doctor who had an available appointment only 4 weeks out instead of the 4 months I had been told by other offices. My appointment was set for the second to last Friday in July. At that point I was mostly going so that my therapist wouldn’t nag me about it. It was a very hot and very stressful summer and I’ll never know for sure what caused my first big symptom flare up, but I count myself lucky to be able to tell you all about it.
On July 17th I was driving home and Scout, my psychiatric service dog in training started to whine. I assumed it was because we had been out six hours longer than normal, it had been a very stressful day, and it was really really hot out. We had just left the grocery store and were on the interstate on the way home. I assumed she was whining because she was tired. I told her that we were almost home. She started barking in her recently perfected Big Girl Bark directly next to my right ear. (Scout is a Leonberger, and even at only 8 months was pushing 100 pounds, so that Big Girl Bark was big.)
I feared there was about to be a potty emergency and pulled into a rest stop a couple of minutes later. She barked until the car was stopped. Before I could get out of the car my vision became dark and blurry, I was lightheaded and dizzy, and then I fainted. I came to with her licking my face. Based off of what was on the radio I couldn’t have been unconscious for very long, but being unconscious for even a second when driving at nearly 80mph can cause a life threatening situation. I had never experienced syncope before and, while tired and annoyed, I felt otherwise fine right up until the few seconds before I fainted. I have no doubt that Scout saved us both that day. She is now learning a more refined syncope alert along with her other tasks.
That day kicked off a really rough time for me. I saw my new doctor the next week and luckily she not only knew about POTS but had a loved one who with it. Because of that it turned out that the letters I brought from other medical professionals backing up my opinion weren’t needed, but we had a nice laugh about it. We were operating under the suspicion that my dysautonomia was POTS until my heart rate started to “do the thing” even if I had not moved in hours. I had a day when my heart rate bounced back and forth from the mid 50s to the mid 140s ever minute or two for about 16 hours. It was a terrible experience. I do not recommend it.
I still can’t stand for more than 15 or 20 minutes without getting dizzy. I’ve had to learn how to work around needing to lean over because that is an almost guaranteed way to mess up, well, just about everything. I’ve missed multiple weddings and other events I’d planned on enjoying. I now only make tentative plans with the exception of doctor’s appointments because I can never guess how I’m going to feel. I know that I have to stay hydrated and avoid getting overheated, but even when I do everything I’m supposed to do sometimes my ANS just won’t cooperate. It’s extremely frustrating.
Like all people with invisible disabilities, I’ve run into some very unkind people. And just like anyone who isn’t blind but has a service dog I’ve run into a lot of very nosy people. Unfortunately sometimes I run into people who are members of both groups. They want to know why I have a service dog and they’re jerks about it. If you have dysautonomia and don’t have the spoons to explain to an inquisitive and rude stranger what that means take a page from my book: I tell them that “sometimes my brain forgets how to drive my meat.” It usually creeps them out just enough to get them to stop asking questions and the levity makes me feel better.
About the Author
Sabrina lives in the woods with her husband, Matthew, their good pal Atlas, three dogs, three cats, a grumpy tegu lizard, 4 ducks, and occasionally a shower full of foster kittens. She is currently unable to hold a traditional job but is working on the
art for multiple decks of cards and is in the beginning stages of writing and illustrating a series of children’s books. On the days that she can stand for more than 15 minutes she helps with the homestead work.
10 Facts About Postural Orthostatic Tachycardia Syndrome (POTS) for Dysautonomia Awareness Month
October is Dysautonomia Awareness Month in the United States and around the world. Information for this article was found on the Dysautonomia International website. They are the leading advocacy group for this condition. Dysautonomia is an umbrella term that encompasses many different diseases, conditions and syndromes, including POTS.
How Common is POTS?
Imagine if everyone in a city the size of Chicago suddenly got sick. That’s how many people have POTS in the United States. Despite the prevalence of POTS it receives a fraction of the funding for research as other diseases with similar occurrence rates such as multiple sclerosis. Current per patient funding for research is about ten cents per person annually.
POTS is a predominately female problem
Like many other predominately female conditions, funding for medical research is low. Investment in treatment or cures is largely the result of an awareness army.
POTS impacts every aspect of daily life
Many POTS patients require wheelchairs or other assistance devices in order to travel, work, or attend school. But they don’t always need them. This can create a lot of confusion for able-bodied friends. Chronic fatigue, digestive issues, headaches, dizziness upon standing and chest pain can all impact a Chargie with a dysautonomia’s ability to succeed in life.
Awareness campaigns have helped decrease the average diagnosis time from six years to four years. This time is still too long. During the time that patients wait, there are expensive and invasive tests, doubts, experimental and holistic options, and psychological conditions to handle. At least half of patients surveyed were told at some point that their symptoms were psychosomatic. Incorrect therapies can prove dangerous and many patients get worse during the delay.
POTS may have a genetic component
Heredity seems to be a factor in some, but not all patients with POTS. It’s possible a genetic predisposition combined with another factor such as infection or trauma creates the environment for dysfunction of the autonomic nervous system to occur.
Limited Treatment Options
There are pharmaceuticals for symptom management and some relatively new drugs being used off label now. Mayo Clinic and others recommend an integrative approach. Natural approaches and lifestyle management can be very effective in treating POTS. Exercise and a high salt diet are widely regarded as the baseline for beginning recovery. For one patient, diagnosed at 13 after three years of searching for answers, it has taken four years of physical therapy to rebuild her stamina. Even after two intensive rehab programs she feels she has reached between 25% and 50% of quality of life compared to her peers and her individual goals.
The Mayo Clinic is the only organization that has evidence based research results of follow up prognosis. The results are based only on surveys that were returned to the hospital after patients attended a recovery program. More research is needed to get accurate prognosis statistics so patients and their families can plan ahead.
Learn more about POTS from Dysautonomia International. If you think you or a family member may have POTS their website has resources you can print to take to your health care providers. You can find Dysautonomia Awareness gear in the shop here.
T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday. She is the mother of Katie Madden, a POTSIE.
When the editors at The Unchargeables asked for someone to do an article on pain for Pain Awareness Month, which is recognized during the month of September, I jumped at the chance. Pain is something I am a living expert on and I thought I’d have no trouble at all writing an article all about it. Then, somewhat ironically, a flare up of my Rheumatoid Arthritis (RA) set in and the very thing I was supposed to be writing about caused huge writer’s block and left me too exhausted to put fingers to keys.
“Show People What It’s Really Like”
The past three weeks I’ve been so unwell that I’ve barely left the house, which means nothing very exciting has happened. This stumped me because while I wanted the article I wrote on pain to be informative and raise awareness, I had also hoped to keep it relatively positive. In my writing about life with chronic illness, I aim to instill hope and keep a positive focus; so being stuck in bed, not feeling very positive and with not a lot to say, I wondered what on earth I should write about. I spoke to my brother about this frustration and I had to laugh when he responded with, “Rachel, it’s ‘Pain Awareness Month’, not ‘talk crap’ month. Show people what it’s really like”.
He was right; this month is to raise awareness. Anyone already living with a chronic illness likely knows what living with pain is like. The purpose of this month is to show people who don’t know what it is really like and raise awareness by doing so. The purpose of this month isn’t to say, “Life is hard with pain, but it’s all sunshine and roses really.” That just isn’t true. So, as I write this from bed, with splints on both wrists, dosed up on painkillers, trying not to be infuriated that every position I sit in is so uncomfortable I wish someone would just knock me out, I’m going to share with you what my life can be like behind the doors I normally choose to close.
Trying to Be Positive About Pain
I’m a pretty positive person; I refuse to believe life is bad just because I got ill. I try not to let my illness stop me from being me and doing the things I love with the people I love. You’re more likely to see photos of me on social media out having fun than curled up in bed.
The thing is, I do spend a lot of time unable to do things I love. In fact, I even spend a lot of time unable to do things I don’t love like housework, washing and food shopping. One fun thing, or even one stupid day-to-day task can leave me bed bound. Pain and fatigue go hand in hand and being in pain all the time is absolutely exhausting. When pain takes over I hide from the world, not because I’m ashamed, but because who is interested in seeing or hearing about that? The reality is, people would probably be a lot more understanding if they did see and hear about that side of it. Being super positive all the time is not a bad thing, but when raising awareness, we have to share what living with pain is really like, not some Instagram-filtered version of it.
Imagine Living with Pain Every Single Day
I live with pain every single day. That is hard to comprehend unless you do, too. Before RA I couldn’t ever have imagined what this was like. Take a second and just imagine how your life would be impacted if you were in pain every single day, constantly.
There is no cure. You now have to live with pain all the time and you have to continue to function and live your life. Some days you may have pain levels of two or three out of ten on the pain scale; some days you will have pain that is a ten. Those are the days you will scream, cry and desperately long for something to make it stop.
The other days of moderate pain you must function as usual. Imagine how that would have changed the day you had today? Would you have showered? Would you have applied makeup? Would you have gone to work or called in sick? Would you have cooked tea? Tidied or cleaned the house? Picked the kids up from school? Done the shopping? People living with chronic pain must keep going and have to do all these things. Imagine how exhausting and difficult that would be.
Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep? You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep; welcome to painsomnia.
Now imagine a few months go by of this daily pain. How tidy and clean is your house? How many sick days have you had? How many social events have you missed? How many times have you eaten takeaway instead of a cooked meal? How many days have you managed to shower or get dressed? How many people have grown frustrated with you? How many friends have stopped calling to check on you? How many times has someone questioned if it’s really that bad or asked if you’re “better” yet? You can’t get better, there is no cure. How do you feel about the future now? How do you feel about facing a life of pain knowing how much it’s already changed your life in a few short months?
The Reality of Living with Pain
This is the reality of living with pain, and it isn’t pretty. The last three weeks I have managed to shower an average of every three days. I used to shower daily. I’ve worn makeup twice. I used to wear it daily. I’ve had to choose between preparing lunch or walking the dog, unable to do both. I’ve had to choose between brushing my teeth or brushing my hair, between changing the bed or changing my pyjamas. I’ve had to sit down to shower, I’ve had to lie down on the sofa after simply walking down the stairs, I’ve had to take a nap between getting dressed and getting a coffee.
The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion.
When Pain Causes Judgement
I recently went shopping with a good friend, who pushed me in my wheelchair because getting ready to go out had left me too exhausted and in pain to walk. While waiting for her to arrive at the shops a man walked past my car, parked in a disabled spot and glared at me. He literally glared at me the entire time he walked around my car. It was obvious he wasn’t sure I should be in that spot, even with my badge on display…and a wheelchair in the boot.
Makeup hides a lot, but it didn’t hide the tears that came from his judgement. Every day people living with pain encounter judgement and discrimination and that isn’t okay. You cannot see if someone has a disability or chronic illness by simply looking at them; they aren’t always visible. A comment of judgement, or even frustration, from someone who doesn’t know what it’s like to live with chronic pain can do so much damage. We need to be a little kinder to each other and show compassion.
Adapt and Try to Be Positive
The thing about pain is that you can manage it, but even with the best medicine, treatments and therapies in the world, there isn’t a cure for most chronic illnesses or the pain that accompanies them. You learn to adapt and live with it, and you don’t let it stop you living the best life you possibly can, but it does change your life. I refuse to be beaten by it and I refuse to dwell in the darkness that clouds me on the worst days. I have moments where I’m overtaken by negative thoughts and a sense of hopelessness, but I have learned how to pull myself out of that. I remain positive and focus on the good in each day, even if the good is that I simply survived that day.
However, being positive doesn’t mean reality should be hidden and to raise awareness we have to get real. You can share the reality of pain without letting a negative attitude consume you. I encourage you to speak to people about what it’s like to live with pain, and be real with them, whilst also keeping a positive attitude. Hopefully it will start some really important conversations and make for a future where people are a little kinder to each other.
If you know someone who lives with pain, I encourage you to ask them about it; you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the loneliness that can often come with a chronic illness.
If you are living with pain, then please know you are an absolute warrior, a champion and you are so much stronger than you realise. Don’t be afraid to share your story and don’t be afraid to admit when things are rough. You deserve support, love and compassion. I know some days it can feel hopeless, and I know some days it can feel like you’ve lost everything, but please know you aren’t alone and everything you are is more than enough. If anyone tells you otherwise, it is their issue, not yours. Keep going, keep fighting and keep shining a light during Pain Awareness Month, and beyond.
About the Author:
Rachel is a 29-year-old Chronic Illness blogger at whatapain.co.uk, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.