Mal de Debarquement Syndrome

Hi, my name is Heather. I'm here because my life has been flipped totally upside down from my chronic illnesses. Every day is a struggle and unpredictable. I’ve had to give up college and my job, and under the circumstances I can’t even watch television.

My friends and family are my life and I would not be able to survive this mentally without them.

#MightyTogether #MalDeDebarquementSyndrome #sjogren 'sSyndrome

Part 1 of 2 Today I feel raw. Today all feels heavy. Today I cannot see light. These are the days between the good ones found in living with rare chronic disorders and the #MentalHealth associated with such diagnoses.

When I was 35, my life was literally flipped on its side as I was thrown out to sea with no sign of rescue. I was diagnosed with the rare, chronic #MalDeDebarquementSyndrome . When I was 39, I was diagnosed with the rare, chronic #ThoracicOutletSyndrome .

When talking about my disorders, I often talk about my symptoms: feeling as if I’m constantly in motion, nausea, brain fog, migraines, chronic pain, change of gait, and numbness and tingling down my arms into my hands. But I rarely talk about the #MentalHealth aspect of living with two chronic incurable diseases.

I was diagnosed with #Anxiety and #Depression when I was 19 years old. It’s no surprise that my #Anxiety and #Depression have increased as my diagnoses rolled in. It’s no surprise that I mourn the person I once was before my diagnoses. It’s no surprise that some days my chronic pain and chronic #MentalHealth are too much to carry.

This all came to a head three weeks ago when the world became too dark. When the weight of my disorders became too much to bear. I could no longer see my worth on this earth. I imagined the life my children would lead without me as a burden dragging them away from their lives. I imagined the relief my husband would feel not having to deal with me. I saw myself as a burden, I felt the pain of my illnesses and the truth of what it must be like to live with someone who always “doesn’t feel well.” I imagined my family would be better off without me. And I held a kitchen knife in my hands contemplating ending my life.

After several minutes standing there, holding the knife in my hand, touching the blade to the blue vein in my wrist, I dropped it in the sink and ran upstairs. I fell to my knees before my husband and said “I need help.”

I was admitted to an emergency room and stripped of my belongings and my self worth. I was required to wear a prison-like uniform that was green rather than orange but still maintained the identifier that this person was a risk to themselves or others.

I was in the emergency room, so I witnessed #COVID19 patients being transferred to ICU. I witnessed a gun shot victim being escorted by police to the room next to ours. I witnessed a male so drunk, his hospital gown was on backwards exposing himself to the world. Food was brought to me at the end of my bed. Occasionally, a nurse would stop in to give me medication. I forgot things. I forgot who I was at times. I forgot where I was. I was medicated and confused. But I was not treated; I was monitored for three days.

I hadn’t slept in three days. I hadn’t showered without someone watching me for three days. I had been alone with my thoughts. I had a young man babysitting me all hours and yet there were no hospital beds available to move me from the emergency room to the psychiatric ward.

On that third day, I called my husband. I begged him to come get me and help me find a #MentalHealth retreat. Where I could work on myself, have counseling sessions, talk to others, and not feel like a prisoner.

My husband saved my life that day. He picked me up, brought me home long enough to shower in my own shower, then dropped me at a new behavioral unit with open beds across town. I checked myself in. I told my story, and the social worker said I would be ok. The heaviness would not always feel this heavy and the darkness would not always feel these dark.

I spent five days in the behavioral unit. We played cards, did yoga, played chess, shot hoops, ate a lot, slept a little, played backgammon, colored pictures saying “you are awesome,” rode stationary bikes and spent about 12 total minutes with a psychiatrist and social worker in those five days.

This is #MentalHealth . This is the state of #MentalHealth in our country. You either remain a prisoner at the local emergency room or you retreat to a behavioral unit where the techs are more worried about the number of plastic spoons that were handed out during meals than they are that a patient cannot see her way out. I would beg to see the light of day and one kind tech would open a door to the courtyard and let the sun shine down on me in -5 degree weath

Hey everyone,

I need to go though another round of medical care. We moved and I have specialists in my known diseases I need to get established with, and I have new and alarming symptoms which may have serious causes that need to be evaluated.

Even though I'm being treated well currently by my medical providers, and have real diagnoses for the symptoms that were originally called psychosomatic, I'm having a lot of trouble trusting and not having panic attacks. I'm worried any little thing I say is going to make them change their minds and not help me because it's "psychosomatic", and I desperately want and need help right now. I don't want to keep being this sick, and if the knots can be untied slowly and in the right order, Lord willing perhaps I don't have to be this sick.

So how do I do it? How do I get through medical care without losing my mind?

Anyone have a good pep talk? :-) ❤️

#RareDisease #Disability #LivingWithPOTS #PsoriaticArthritis #PeriodicParalysis #Anxiety #PanicDisorder #CPTSD #AntiphospholipidSyndrome #Dysautonomia #MalDeDebarquementSyndrome #OvarianCyst #VonWillebrandDisease #CheckInWithMe

I have returned from a five day clinic at the Mayo Clinic in Rochester, Minn. participating in their Thoracic Outlet Syndrome clinic. As someone who has lived with the chronic rare condition Mal de Debarquement Syndrome, which leaves me feeling in constant motion, being treated at the best care facility in the world, was a high point of my past five years. I learned several things throughout the five days, but the following five were the most profound:

I am a “pleasant and intelligent 39 year old female.” Following each appointment, doctors would type up a summary of our appointment and any testing. Each note began with something similar to the above. Some would include information about my work, family or handedness. But they all included a one to two page summary of our appointment. Such thorough documentation allows patients to refer to their appointment and (especially for someone with brain fog, recall issues), it is a helpful tool in relaying to loved ones or brainstorming questions for the next appointment. Regardless of the reason, these notes served as a positive tool for me in recalling all points of our appointment and put the responsibility on the doctor to share the outcome of our appointment.
Compassionate care is lived throughout all aspects of the Mayo Clinic. From the team of volunteers who checked COVID-19 symptoms upon entering the clinic, to the team members who checked me in, to the specialists, to the docents, to the nurses, to the residents every person I encountered presented genuine care, concern and compassion. From the sweet nurse who rubbed my ankles while I received a nerve block through my neck to the docent who talked me through my tears before I entered the MRI machine, each looked at me as a human being first. As a chronic patient I’ve been treated as a puzzle to be solved, a freak show on display, or a walking talking mystery, but I have rarely been seen or treated as a person by EVERY person I encountered in one clinic.
When you present as a “complicated patient” at the Mayo Clinic, you know you’re a complicated patient. My official diagnosis is Bi-lateral Neurogenic Thoracic Outlet Syndrome with complications. What this means is the specialists cannot explain why I developed these symptoms. Typically they would appear after an injury or on only one side of the body. The specialists at Mayo saw the symptoms clearly through the thorough testing, but they cannot explain why I have them. Also, due to these complications, it’s unknown if the traditional treatments will benefit me. Considering the end treatment is bi-lateral rib surgery or removing the top rib on both sides of my body to ease the compression, these complications prove difficult whether such surgery will be successful.
The ability to be seen by more than 14 health care providers in five days provides a thorough and diverse approach to care. During my first consultation, I was told from a humble vascular medicine physician that the reason I was at Mayo was to see many specialists, some who may disagree with one another. This is a unique, collaborative approach to care. While all specialists agreed on my diagnosis, not all agreed on the treatment options. This provided a unique approach to explore a variety of different treatment options and ultimately leaving the final decision to rest in my hands.
I can do brave things. 10 hours of testing on Monday was one of the longest days I’ve put in in a very long time. Most tests were intended to exacerbate my symptoms which caused great pain and fatigue. The inability to relax and rest between appointments made for a very long day. My final test was an MRI of my brachial plexus (a network of nerves in the shoulder that carry movement and sensory signals from the spinal cord to the arms and hands). MRIs cause me great anxiety as I don’t love feeling out of control or being confined to small places. After being placed in the MRI machine, we found it was broken and I had to be moved to endure the process all over again. Although my body was exhausted, I did it.

While being diagnosed with complications by the best medical center on this planet is not the outcome I had hoped for, it did present me with a variety of treatment options. But beyond a diagnosis or treatments, I was able to be seen and heard by some of our world’s top specialists. In the end, I had the opportunity to be seen by a care team that treated me a human first, then a puzzle to solve next.