EDS is a full-time job

Posted March 26, 2021

Misti smiles into the camera wearing a white tshirt and red lipstick

There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can resemble having a full-time job. Juggling these health conditions not only takes a toll on our energy but also takes up most of our time.

On a regular basis, I see several specialists: cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, otolaryngologist (ENT), endocrinologist, gynecologist, gastroenterologist, and of course my general physician. I also see a chiropractor for traction and the use of some machines to help build strength in my lower back. I don’t have access, but need to see a geneticist, nephrologist, and orthopedic specialist. That is about 12-16 specialists every 3-6 months. If I see fourteen doctors four times per year, just as a guess, that is fifty-six doctors appointments in a year! I also end up in the ER, on average, about six times per year and usually have one or two hospital admissions… on a good year. This year, I had a few surgeries already and last year I had a pacemaker put in. Last year I probably had close to fifty emergency room visits so we won’t count that year.

An average day for me is waking up around 4 am with lower back pain, thirst, and a full bladder. I never truly sleep through the night. I have a dysfunctional nervous system (dysautonomia) and suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome, sleep apnea, and issues with my body temperature, blood pressure, heart rate, and more. My pain level has NEVER been under a five on the 1-10 scale. Not even for a moment. I usually have to be out of bed by 7-8 am because my body is so sore when lying down for a long time. Even if I am sick, I have to get out of bed or the pain is so severe that I can not breathe. This means that I can not sleep for over six hours.

I take most of my medications and supplements in the morning. I usually start my day off with a headache, nausea, low blood pressure, and a general feeling of being hungover but without the fun tequila shots. As I make it to midday, my entire body aches. Every cell in my body hurts. I feel so fatigued and exhausted, even if I didn’t do much. My head hurts l and if I am around strong perfumes, chemicals, or exposed to any chemicals in my food, I will have a runny nose and migraine. I have chemical sensitivities that are hard to avoid. Wearing a mask and watching what I eat helps.

Usually, by 5-6 pm, I am ready to collapse. Sometimes I make it through, with a smile on my face, because I try to live my life to the fullest. Despite how I feel, I push it to the limit to be the best mother, wife, friend, student, and so on. I refuse to give up no matter how hard it gets.

By evening, I have made it through the day and usually, my body temperature is low and I am freezing but somehow feel like I am burning up and running a fever. My temperature usually will read 96-97 degrees. It is incredibly uncomfortable to feel hot and cold at the same time. My chest feels heavy at night and if I lie on my back I start to feel fluid in my lungs. On a tough day, I will breathe so shallow while I fall asleep that I jump up gasping for air, with low oxygen and a racing heart. Other nights, I can’t sleep because memories flashback from the past when I was in the back of an ambulance or in the ER with chaotic arrhythmias. I close my eyes and hope to get to the next morning. It all starts over again in the morning.

Depression can be a struggle for those who suffer from daily pain or frequent traumatic hospital visits. Depression can also be a factor because we feel like we have lost the person we once were and are prisoners to a body that doesn’t feel like it belongs to us. Our friends drop like flies the more we cancel on them, relationships are strained and many physicians don’t take us seriously because oftentimes these symptoms don’t show anything in blood work and we are passed off as a mental case. We feel alone and like no one understands. It is scary, disheartening, and frustrating. Seeing a therapist is important.

Having an invisible illness is a battle. We are warriors. We battle and fight every damn day. Tears are shed on the battlefield often and we watch our tribe through ups and downs on our online support groups. We have lost some and watched others give up. We keep fighting and supporting each other and raising awareness while we struggle to make it out of bed. Always be kind to others, as you have no idea what they are battling under all that makeup and forced smile.

 Misti lays on the couch next to her cat an x-ray shows Misti's pacemaker

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