This time last year, I published my first and only post detailing life with POTS and my recovery process, My Toothbrush, My Trophy. One hour after hitting the publish button: BOOM, I was back in the hospital for more POTS shenanigans. It felt like some kind of blog jinx! October is POTS Awareness month, and last year my body threw a parade in honor of it.
For me, the thing about POTS is that I didn’t know there was an illness I couldn’t fight my way through. With chronic pain, I had forced my body into submission for so many years- all of my adult life in fact. Whether I needed to utilize walking aids, medications, treatments, or therapies, my crippling pain hadn’t kept me from working, going to school, or being there for my husband and family. So, when my autonomic nervous system kicked it (and it really crapped out on me), I was (and still am) shocked that my willpower has not been enough to overcome.
Last October, the ER doctors thought I was having a heart attack because my chest pains were so intense, like electric jolts piercing my heart. I had experienced chest pains, palpitations, and a racing heart (tachycardia) regularly for years with the onset of POTS, however nothing as intense as the pain that began that morning. The ER had never heard of Postural Orthostatic Tachycardia Syndrome or Dysautonomia before (go figure). They didn’t know what my other conditions were either (of course) but I wasn’t as concerned about those at the time. We explained how once upright, my blood pressure drops and heart races, and my autonomic nervous system shuts down. “Oh, almost everyone has that,” the ER doctor said under his breath, chuckling. “Well doctor, everyone doesn’t almost pass out every time they try to sit or stand up,” I whispered through my head pain, angry that he would assume I am confined to lie flat in a bed for years shrouded with earplugs, a headset, and an eye mask- all over a little dizziness upon standing. (Sure, everyone has that). Keep in mind, this is tucked into a tiny dimmed closet-size room in the ER, as my hypersensitivity to light and sound exacerbates my ongoing migraine disorder too much to be around noise. I lucked out with a sweet nurse who knew what RSD was, and she was the only reason I was given special accommodations. They did multiple tests at the hospital, then through the week, I had several rounds of tests at my Cardiologist’s office. You know, the usual fun…
Verdict? They couldn’t find any reason for my heart to experience the additional pain. That was excellent news. POTS is a nervous system condition which effects the way the heart behaves; it isn’t a cardiac condition effecting the way the body behaves. No heart condition- score!
Conclusion: Since they couldn’t find any cause for the pain and onset of increased symptoms, the next 5 months thereafter were out of the doctor’s hands. (Thanks doc!) My fatigue and brain fog were unwavering. Just trying to move my fingers across the keyboard, holding my phone to text, or forming complete thoughts enough to compile a short blog post became so trying…so overwhelming…so frustrating… my short-lived recovery progress had taken a step in the wrong direction. For the first 2 years after the POTS began, I was in stasis mode. Pancake body, syrup brain. I was so ill and no one knew how to help me. After the spinal procedures in 2011 which threw my body into this tangle of illness, I was basically a lump of pain and un-moving frustrated flesh. Having finally made my first bit of progress last year, working so hard to use the restroom on my own and do some of my own personal hygiene from bed, falling backward again was not in my recovery plan! By last Christmas, I became depressed that my body was no longer moving forward and I was still stuck in the same bed going on 4 years after all of the doctors, hospitals, medications and hard work. (If you follow my blog, my posts reflected my disposition.)
Many with autonomic nervous system dysfunction (dysautonomia) carry on normally, dealing with bouts of dizziness or feeling lightheaded periodically. About a quarter of those with POTS are too disabled to work a job. And a small percentage have symptoms which are so severe, they are confined to a bed and may be hospitalized regularly. I fall into the last category, though I haven’t been hospitalized for a whole year- take that chronic illness! (Let’s not count the times I’ve ignored my doctor’s recommendations to go to the ER). A very large number of those with POTS are teen girls. Awareness and treatment options are lacking for the estimated 70 million individuals living with Dysautonomia worldwide. [Dysautonomia International] Conditions like EDS, Fibromyalgia, CRPS/RSD, heart attack, Chronic Fatigue Syndrome/ME/SEID, Chiari Malformation, stroke, Intracranial Hypertension, Traumatic Brain Injury, Spinal Cord Injury and Parkinson’s can cause Dysautonomia and POTS. To find out if you or a loved one have POTS, see a cardiologist for a “tilt table test” and cardiac monitoring.
Symptomatically, POTS is compared to Congestive Heart Failure, COPD, and massive blood loss. I’ve learned that everyone with Dysautonomia experiences it a little differently, but the most prominent symptoms for me have been low blood pressure, fatigue, confusion, trouble concentrating (brain fog), extreme hypersensitivity to sound and light, brain fog, head pain, trouble breathing, syncope/pre-syncope (fainting or almost fainting), vertigo, brain fog, muscle shaking, weakness, trouble digesting and absorbing food (gastroparesis), bladder dysfunction, chest pain, heart palpitations, brain fog, weak pulse laying down, heart racing when upright, orthostatic intolerance, brain fog, and temperature change intolerance…did I remember brain fog?
It took 2 years for me to get properly diagnosed with POTS and Dysautonomia because pain management doctors and primary care doctors don’t know what it is, what the symptoms are, or how to treat it. Just yesterday, my pain management doctor tried to argue that I developed it from “laying around too much” when the immediate onset was actually damage to my spinal cord. For individuals with POTS, the opposite is true. Pushing yourself to do more than your body allows can send your blood pressure plummeting for weeks or months putting you into an almost comatose state, can cause fevers, flu-like symptoms, severe fatigue, wide-spread physical pain, swelling or “blood pooling”, and a long list of intensified symptoms (see all Dysautonomia symptoms here). Last October, for instance, I believe my trip to the ER and subsequent 5 month puddle-of-me was the result of pushing myself to climb a flight of stairs.
Thankfully, this past spring, my body let up enough to allow me back on my journey toward recovery. (Que happy music.) I’m currently doing home physical therapy from bed with a knowledgeable cardiac rehab therapist, I have new goals for my life, and when I am faced with my body’s set-backs, I’ll try not to allow my frustrations to defeat me.
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.
But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.
Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.
But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.
Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.
Find her books here available on BarnesandNoble
Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.
In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.
I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.
I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.
In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.
During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.
If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.
Article dated February, 2015
Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome, also known as ME, now renamed SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.
For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though you need a nap. Your thoughts become so blurry and confused- you begin to fear Alzheimer’s or dementia. Migraines, loss of appetite, body pain, hypersensitivity to smells, sounds, lights- these symptoms are the tip of the CFS/ME/SEID iceberg. Imagine feeling like you are moving through quick sand- and there is no end to the breakdown. You are sure it will pass in time, but as time passes, you only become more weak, frail, and may even struggle to stand and walk. Doctors help you by telling you to “get more rest” and send you home. This is what many with Chronic Fatigue Syndrome experience.
The name, Chronic Fatigue Syndrome has been a problem since its origin. Can you imagine suddenly finding yourself confined to a bed, unable to raise your arms from sheer fatigue only to be told by other medical professionals and family members: “Sure, aren’t we all ‘chronically fatigued?” That has been the overwhelming problem with the original name. Doctors without enough education of the disorder have been brushing their patients off, leaving them incapacitated and searching for answers on their own limited energy supply. It’s estimated that as many as 91% of those with CFS/ME have yet to be diagnosed because physicians are still unsure whether or not it is psychological or “all in their [patient’s] heads”.
Over one year ago, the Institute of Medicine began running studies and tests to narrow down specific symptoms and markers in individuals who develop Chronic Fatigue Syndrome/ME. An independent panel of 15 physicians then met to narrow down a few diagnostic criteria and to decide on a new name for CFS/ME. They believe that each word in “Systemic Exertion Intolerance Disease” is more specific and clear as to how the condition affects the body.
Systemic Exertion- indicating the extreme fatigue or malaise all over the entire body.
Intolerance- implies impairment from any sort of activity. ‘Orthostatic Intolerance’ is an example of a common type of intolerance found in those with CFS (cited in the IOM study).
Like other conditions, those with CFS/SEID experience a long list of symptoms which are not all included in the short diagnostic list; keeping the diagnostic criteria short is meant to help doctors understand and treat patients with this disorder better. Here is the list of symptoms the Institute of Medicine’s special panel narrowed down after one year of testing those with Chronic Fatigue Syndrome:
-Profound fatigue lasting at least six months
-Complete exhaustion even after minor physical or cognitive exertion
-Cognitive impairment or “brain fog”
-Worsening of symptoms upon standing or Orthostatic Intolerance
There is a feeling in the CFS/ME community that the re-naming is confusing and sets struggling patients back further. Many in the CFS/ME community are disappointed that the new name is not “Myalgic Encephalomyelitis” to make the name cohesive, finally. Even though Chronic Fatigue Syndrome was the official name in the United States, the international name, “ME” has been largely adopted by CFS sufferers here in the US. However, the IOM argue that there is not significant research showing that patients with SEID have brain inflammation or muscle pain as the core symptoms (the meaning of ME). Some CFS specialists and patients with CFS/ME feel the updated name and new marker symptoms overlook critical issues of the disease like chronic pain, headaches, sensitivities, cardiac disturbances, and gastro-intestinal disruption. This isn’t the first time this disorder has had a make-over, however. Epidemic Neuromyasthenia, Myalgia Nervosa, Epstein Barre, and Royal Free Disease are a few of the names that have been given to those with CFS, now called Systemic Exertion Intolerance Disease. Researchers say in the next 5 years, it may be re-named again, as new research will likely continue to emerge.
Even though there is still uncertainty regarding the new name, many believe there is reason to be positive. The 235-page report released by the IOM is expected to lead to more research for the disease, better funding, and more appropriate treatments for Systemic Exertion Intolerance Disease. Those who at one point may have called up to 2.5 million Americans “complainers” or “lazy” will have more information and education to help the ignorant understand this debilitating condition. Doctors who may have once brushed off their patients’ symptoms because there were unclear guidelines, now have clarity on which criteria specify SEID. And lastly, it is now called a “disease” which shows there is progress in understanding how it affects the brain and body. For such a complex condition that is so debilitating, more understanding and more awareness is paramount!
Read the IOM report for yourself here: http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf