Nystagmus

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    Community Voices

    Hello from Starbucks!

    Hi everyone, I am at a Starbucks near my house. I just joined The Mighty because I have a friend with EDS and she linked a story from here. Anyway, I was surprised severe myopia or even Low Vision was not one of the categories to choose from when setting up your profile. Anyway, I'm glad there's a group for us. I am corrected to about 20/80 and have nystagmus. I have some retina issue and eye randomness that I was born with. I can't see well enough to drive.

    Quick question, does anyone else have issues going to places like Target or any big box store to get glasses? My prescription is -15 and -17 and the person wasn't able to put my prescription into the computer. She'll get her manager to see if there's a certain "YES THIS IS A REAL PRESCRIPTION" button to push on the computer to enter my prescription and finish my order, and they will call me Monday to confirm. But man, I definitely felt like the oddball who is not 'normal' enough to do normal things like drive and get eyeglasses at a regular place, but my eyes are not so severe that I require a cane or anything like that.

    #Blindness #LowVision #myopia

    Community Voices

    It helps to have a bit of color to brighten your mood. Advice Please! Depressed & chronically https://ill.Need someone to come into my home.

    <p>It helps to have a bit of color to brighten your mood. Advice Please! Depressed & chronically https://ill.Need someone to come into my home.</p>
    53 people are talking about this
    Community Voices

    Cuddles my best friend

    <p>Cuddles my best friend</p>
    16 people are talking about this
    Community Voices

    Being alone with Nystagmus #

    So I was born in 1970 with Nystagmus. My parents were told oh it's only cosmetic and will not affect her vision ...really??? So I did not have any accommodations in school until I went to college in the late 90s. That is a long time to struggle. Where I live noone knows anything about Nystagmus even the eye drs know almost nothing. I do not know another human being with Nystagmus. I hate to meet new people or drs. I always can tell when a new person first notices my condition because it's like they latch onto my eyes when we are talking and they are really distracted. That has led me to constantly look at the ground around other people. I have social anxiety really bad. I am exhausted because I have spent almost 50 years trying to keep up with people without low vision not knowing I had low vision without anything to compensate for the challenges of everyday visual challenges so I am really excited to find other people with this condition and to hear what helps you manage in such a visual world.
    #Nystagmus

    Community Voices

    Hi does anyone here have congenital Nystagmus?

    1 person is talking about this
    Mehak Siddiqui

    Living With Albinism and Nystagmus

    Spell check doesn’t recognize the word nystagmus. Neither do most people when I explain that it’s the reason why my eyeballs constantly shift from side to side, sometimes slightly wobbling, sometimes darting rapidly. As a person with albinism, I was born with congenital nystagmus and the resulting weak eyesight. Whenever I get into candid conversations about my vision, the question I’m asked most often is, “Does your whole world keep shifting about too, because of the way your eyes move?” Thankfully, it doesn’t. But focusing on anything specific is pretty difficult. That’s why I can’t recognize faces easily, especially from a distance or within a crowd. Reading signs — whether in the streets, shopping malls, or at airports, train and bus stations — is impossible, as is deciphering menus printed on walls behind the counter at cafes and restaurants. Technology helps. I click photos of signage or text on my phone and zoom in to make better sense of the world around me. I’m extremely fortunate to have vision that’s considerably better on the ocular spectrum of people with some form of albinism. And I acknowledge that I’ve had things a lot easier because of a privileged background with access to resources and the support and help of family and friends. Nonetheless, nystagmus slows me down. Just like I zoom in on the phone screen, I need to zoom in on — get awkwardly close to — everything in my physical reality too, whether it’s a book I’m reading, food I’m enjoying, an ATM I’m withdrawing cash from, or the laptop I work on as a digital nomad reaching for my dreams of traveling the world. Text-to-speech is among my favorite inventions and I saved up to recently splurge on a MacBook Pro for the way it’s so simple to have any text read out loud to me at the tap of a button, and for the unrivaled trackpad that makes zooming in and out a breeze. I often get quizzical looks from people who don’t immediately understand why I hold my phone screen so close or hunch over my laptop when working, but I’m all too used to being stared at and it doesn’t make me as uncomfortable as it once did when I was still an anxious and timid teenager. People often overlook that living with any kind of different abilities often leads to other issues like low self-esteem, anxiety or depression. Growing up, I have had to work through my fair share of inner turmoil to accept myself and not let my eyesight or my albinism define me. As a “brown” person who is whiter than most Caucasians and with hair that a boy I liked once told me is described as “strawberry blond,” I’ve dealt with unwanted attention and probing personal questions all my life. I’ve grown to be more amused than offended by the confusion that my Indian identity causes, particularly when I hand over my passport for scrutiny at airports or hotels. “You don’t look Indian,” is something I’ve heard all my life, most of the time with a hint of a positive connotation like it’s a good thing. And it’s always strange to experience white privilege when I’m not really white — I’m often treated like a foreigner in my own country. My appearance has ceased to bother me as much as it did when I was younger, but that’s not to say I don’t get self-conscious. I often find it uncomfortable to hold eye contact and still feel wracked with shame when accused of not smiling or waving back at someone or failing to understand their gestures. I never pre-book rides from airports in foreign cities because I know I’d never be able to find my name on a placard in a crowd of strangers. Sometimes, I can sense people pitying me, particularly when I share that I can’t drive, and they even go on to recommend ophthalmologists who helped someone they know. “Why don’t you just get surgery?” I’m asked. As if I’d never have thought to look into this option myself. Even with all the advances in medical science, there is still no reliable fix for nystagmus and even if there was, I’m not entirely sure I’d jump at the chance of getting my eyes operated on. I’ve made my peace with living with nystagmus, using public transport and — thanks to technology once again — Uber. I take heart in the fact that this way of getting around is also better for the environment. I grew up feeling it wasn’t fair how I couldn’t see as well as everyone around me, how I had to sit right up front in class throughout school and still not be able to read the board, and how I couldn’t play ball sports to save my life. But all these years later, cultivating a sense of gratitude has changed my perspective. I am deeply appreciative for the wonderful support network I have and the ways in which I’ve been able to reach for my dreams. I’m grateful for my job and the ways technology helps me out, and I am hopeful that companies and governments will invest more and more in improving accessibility for a truly inclusive world. There are still moments of frustration when I think if it wasn’t for my eyesight, perhaps I would have achieved a lot more than I have so far, but I refuse to wallow in such negativity. I refuse to make my nystagmus an excuse for not going after my dreams. Just like with everything else in my life, I’ll take my own time to get where I want to be.

    Community Voices

    Disappointed again

    So I have this vacationed planned with my one best friend starting this Saturday. We’ve planned it 4 months now . We are driving my daughter from the Bay Area to Oregon for horse camp and then making a road trip just us two. I have an eye condition called Nystagmus in only one eye and driving, especially long distance is very hard because my eye moved involuntarily. I don’t have control of it. It’s a small movement but enough to cause depth perception problems and double vision and dizziness. Well, my friend just bailed on me! I understand she has a lot of problems right now , to long to go into, but I was going to pay for this trip and now I have to figure out how to get my daughter there. I can try to drive but my anxiety will be through the roof! This camp cost $1,200 and she’s so excited and it’s been planned for months. I’m so fed up with people and being disappointed all the time. No one cares about me. No one understands my eye condition because they can’t see it, just like they can’t see and don’t understand depression . This world sucks!!! And now I’m even more alone !! Feeling so depressed and having hard time functioning because I need to figure this out . I may just drive but it will be so so so hard 😢😢

    2 people are talking about this
    Community Voices

    Thread of Depression

    livingwithss logo

    Have you ever wondered which Superficial Siderosis symptom is the most commonly shared and often the most incapacitating? Sensorineural #HearingLoss, #Ataxia, and Myelopathy are all horrible. Statistically, 50% of SS patients will have to cope with at least one of the big three if not more. It may surprise you to the most common clinical symptom Superficial Siderosis patients suffer from is #Depression. Not everyone falls head first into a pit of despair, but the battle for your health wears down even the most optimistic person.

    As your #Disability progresses stressors take over; slowly your quality of life begins to change. Conversations become impossible to follow and going to work a nightmare. Diplopia or #Nystagmus robs you of your ability to drive. The bonus, if you live in a rural area without access to public transportation, say goodbye to your job and your independence. If you’re one of the lucky few to develop anosmia enjoying your favorite foods is now a memory.

    Stress And Depression

    Chronic stress can naturally evolve into Depression, but there is also evidence of a biological connection. Screening Superficial Siderosis patients for Depression needs to be a regular part of their plan of care. Loss of concentration, sleep disturbance, cognitive and behavior changes can be the cause of and caused by Depression. Increased physical pain and fatigue can be real consequences in a depressive state. Friends or family often believe feeling sad is run-of-the-mill, so it’s easy to miss the distress.

    When Robin Willams took his life, he was not aware he had Diffuse #LewyBodyDementia. His widow wrote an essay in 2016 for a neurological journal titled “The terrorist inside my husband’s brain.” She describes his struggle in vivid detail; he was “growing weary.” That is a perfect description for all of us who are touched by superficial siderosis.

    The last few years have been very hard on Gary. He had to give up his job. They made him stop driving. A sister lost her battle with #Cancer. Stress and #Anxiety. His physical deterioration continued body pain, constant headaches, and hearing. But the most significant noticeable change was his short-term memory. I could feel the Depression taking hold. It continued to worry me for months. We were sitting in the kitchen just before Christmas when the conversation turned to Robin Williams. Gary said, in a moment of honesty, he understood what drove Robin to commit #Suicide.

    Taking Control

    Gary entered the VA healthcare system this past January. I brought up our conversation from December in his new patient interview. Depression and suicide are two big trigger words with the VA. Gary explained he merely meant he understood what would drive someone to take their life. I was given instructions for emergency intervention if it ever became necessary.

    This October we traveled to Little Rock for an updated neuropsychological exam. His first test was in 2014. The results were consistent with his previous testing. No signs of #Dementia but there was still mild cognitive decline with short-term memory loss. Clinical was a significant contributing factor regarding memory problems. Dr. Fazio suggested starting a treatment plan, but Gary has chosen to decline therapy at this time. We returned home with the understanding of the importance of annual screenings and caregiver intervention.

    Community Voices

    Still Here and Mighty Resilient

    STILL HERE AND MIGHTY RESILIENT

    By Mystery Lady

    In 2005, my life changed in one day.

    A mystery illness entered my life and had me bedridden overnight where I remained for the first two years of my journey. Immobilized by unrelenting pain, my fatigue was debilitating to the point that I could no longer will my body to move. I felt closer to death than to life. On most mornings, as I woke up from a night of broken sleep, my first thought was often astonishment at the realization that I was still alive. On some days, I could eventually muster enough energy to get out of bed and have breakfast after which I would “kiss the couch” for the next 12 hours, getting up only to feed the cats or visit the bathroom. Anything else was out of reach. I did not have the energy to read or watch television or talk. All I could do was lie there, and survive.

    Unbeknownst to me at the time, there would not be any significant improvement over the next decade and a half. Doctors were baffled by my medical dilemma and many called me “mystery lady”. No one could explain how a 47-year old woman had gone from leading a full life of working, traveling, socializing and volunteering to a complete inability to produce energy for such mundane activities as brushing my teeth, going up a flight of stairs in my home or taking a shower. During the first few years of my illness, I collected diagnoses of exclusion including #InterstitialCystitis, irritable bowel syndrome, post-viral chronic fatigue, mitochondrial dysfunction, food intolerances and #SinusTachycardia. Yet, no cause or treatment was offered and specialists adopted a “wait and see” approach year after year. My life was passing me by…

    Twelve years after that fateful day when my body broke down, I was assigned a new family physician who turned out to be both a blessing and a turning point. She meticulously studied my case and listened to me with intent as I told her about my journey into #ChronicPain and illness. She did not doubt the severity of my pain being expressed through dozens of symptoms plaguing me from head to toe. Dr. O. was clear from the start that she and I were to form a therapeutic alliance built on trust and truth. Under her medical leadership, specialists ordered tests and offered medical hypotheses to help figure out the puzzling mystery. Tests were done for #Hyperthyroidism, pheochromocytoma, carcinoid tumour, mast cell activation disease, porphyria, #Vasculitis, acromegaly and #AdrenalInsufficiency. All turned out to be negative. And yet, my pain persisted as did a myriad of symptoms ranging from episodes of sudden elevation in blood pressure and tachycardia to complete intolerance to heat, an inability to concentrate, unusual sweating, flushing and edema of my face, hands and feet, burning skin, migraines and shock-like pain in my legs, anosmia, and most of all, incapacitating left-sided abdominal pain. For the last 14 years, I’ve been trying my best to manage 30-odd symptoms. Pain does not take a vacation…

    As of 2019, some of my symptoms have been given a “home” (diagnosis). After two years of ongoing testing and follow-ups from March 2017 to May 2019, most arrows are pointing in a clearer direction: neurology, auto-immunology, rheumatology and oncology. Recent diagnoses now include #Nystagmus (a vision condition in which the eyes make repetitive, uncontrolled movements), #Erythromelalgia (intermittent episodes of severe, burning pain), #Rosacea (chronic inflammatory skin condition) and #Osteoarthritis (wearing down of cartilage). Other investigations still in process include myalgic encephalomyelitis (ME), small intestinal bacterial overgrowth (SIBO), #Fibromyalgia, central sensitization pain syndrome, #Dysautonomia and a neuro-endocrine secreting tumor. It’s quite the load.

    As I enter my 61st year of life, my journey to wellness is far from over, yet I take comfort in the fact that I am still here, still resilient and still committed to finding solutions, treatment and stability in my symptoms. I wish to share some encouragement and personal insights on resilience with all of you who are experiencing chronic pain and #ChronicIllness.

    • How do we maintain a sense of hope when the medical community doesn’t have answers, and thus, cannot formulate a treatment plan for us?

    • Where do we find solutions when our illnesses are rare and research on orphan diseases is scarce?

    • How do we get back up after collapsing emotionally, physically and spiritually on a daily, if not hourly basis?

    • How do we maintain a love of life while our health is in turmoil and we have lost all sense of normality?

    LIVING FIVE MINUTES AT A TIME

    On my worst days, I would commit to making it through the next five next minutes without allowing my brain to worry about how long my suffering would last “this time” or even if it would ever stop. Although I was in a constant level of daily pain and fatigue, flares would drive it up to the point of being unmanageable and I often wound up at the emergency department. I’ve had 24/7 flares lasting up to three months at a time, sometimes longer. By focusing only on the few minutes ahead of me, I could survive and maintain my resilience minute by minute. Living five minutes at a time has been a saving grace.

    ASKING FOR A PEP TALK

    When I had a particularly difficult day and felt the darkness of despair shadowing me, I would ask my husband for a pep talk to get me through. He would sit by me, hold my hand (without stroking it as even the slightest touch created even more fatigue or pain), and would pronounce four key words that got me through many, many difficult moments. He would use his most compassionate voice and say to me, looking straight into my eyes: “This too shall pass”. Every single time he did that, he empowered my resilience and helped me find calmness in the midst of adversity.

    GRIEVING IN SMALL STEPS

    You know how a bookmark allows you to find your place in a beloved novel and if you misplace your bookmark, you lose your place in the story and you find it a little frustrating? Illness is like the lost bookmark in the sense that it takes away your “place” in life, and that is more than a little frustrating! The life I used to have and enjoy is no longer a possibility (at least, not in this moment) and I understandably grieve such an immense loss. Yet, if I only see the “big picture” of that life-altering loss, I tend to panic and struggle because the grieving process is requiring more energy than I can produce. To maintain my resilience and uphold hope, I break down my losses in little pieces and grieve the lost bits and parts of my life in manageable increments. I allow myself as much breathing room as I need in between my grieving moments.

    RESISTING COMPARISON

    When I compare my life today to the life I had before chronic illness, I feel my resilience go dark and I lose my way on the journey. It takes a fair amount of courage to accept a new normal and I resisted it for a long time thinking that if I accepted it, I was allowing illness to settle in. Acceptance is not surrender; it is simply accepting what is in this moment. No more, no less. The trick for me is to keep remembering that there may come a time when science and medicine will have a better understanding or a treatment for what ails me. I could get better. My health could improve. There could be a doctor out there who will figure out how these symptoms fit together and how to help me recover, rebuild, restore. Resisting comparison and maintaining hope in a small corner of my mind shines a light on my resilience.

    CHOOSING WORDS WISELY

    Chronic pain and chronic symptoms tend to play the same tune over and over again in our mind and body. A never-ending cascade of sour notes and disharmony! We know all too well the words to the song and each note scratches our heart like fingernails on a blackboard. My most fragile self tends to show up at bedtime when my home is filled with stillness. It is then that my mind starts to work in overdrive and weakens my resilience. In those moments, I choose wise words to quiet down my worries. I borrow from the Emotional Freedom Technique whereby a certain phrase is used while tapping on specific acupressure points. Although I don’t do the actual tapping exercise while I’m in bed, I adapt the EFT phrase to my reality of the day and repeat it in my mind to block out negative thoughts that interfere with falling asleep. For example, on a day when I feel overwhelmed by fear, I might repeat a phrase similar to this one: Although I have insecurities about my future, I deeply and completely know that I am in the safest place I can be right this moment.

    I hope that what I have shared with you will resonate on some level and be helpful on your journey. How do you remain resilient? What tools do you use to help you stay in the light? What inner resources do you tap into to make it through each day? I would love to hear from you if you wish to share tips and advice on staying resilient. I look forward to learning from you.

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    Community Voices

    A Therapy Story

    VRT ( Vestibular Rehabilitation Therapy) is a form of therapy that uses exercise to improve gaze (eye movement) and gait (walking/movement).

    My vestibular disorders, which are a result of cerebellar atrophy, vertigo (dizziness) and #Nystagmus ( involuntary rapid eye movement) are permanent conditions. VRT and medication is the only way to hope to improve such conditions.Since the initial diagnosis, over 5 years ago, my relationship with my body has been well—strange. Sometimes my fingers feel like they belong to someone else.

    Sometimes my joints and muscles ache for seemingly no reason. Sometimes my legs seem disconnected from my body and I have to think about them, make peace with them, before they work.

    Sometimes I’m scared to move.

    Sometimes I feel like I’m moving even when I still.

    Sometimes my eyes see black dots and floaters and finite things often lose their edges.

    But sometimes, my joints and limbs and muscles and eyes act like they should, the important circuits inside are connected, and nothing hurts and I’m reminded of the person I use to be.

    And sometimes those are the hardest moments.

    A Therapy Story

    My therapist, a young guy, shows me how it’s done.

    “You sit upright on a Swiss ball, knees bent, with your feet firmly planted on the floor. Lift one foot 6 inches off the ground, hold 1,2,3 then slowly lower your foot to the floor. Alternate between each foot. 30 reps each foot.”

    He’s wearing blue khakis and shiny brown loafers and does one rep with seamless ease.We trade places. I sit on the blue Swiss ball. Feet firmly planted on the floor. Upright, knees bent.

    He stands behind me and says he’ll catch me if I fall.

    I start with the right foot. The right foot abides. I lift and hold. 1,2,3. Then bring it down to the floor.

    “Good.” he says.

    I stare at the left foot and the left foot stares back at me like we knew each other from a past life.

    My mind commands, “Move.” “Now.”

    The left foot remains still, defiant, and planted as if it had suddenly grown roots.

    “Move.”

    Nothing happens until I pull the left foot up. But it’s slow and forced and unnaturally hard.

    The left foot throws shadow to the floor but before I can begin to count, my left foot chases the shadow and slams the ground.

    29 more reps.

    “Try again,” my therapist encourages.

    Across the room there’s a woman with a black brace hugging her left knee. She’s walking on a treadmill. She’s staring at me. Her eyes are heavy. Her gaze is real.

    Since my diagnosis, 5 years ago, I’ve developed a skill. I can read her mind. “No cast. No brace. No crutches. A secret wound,” she thinks.

    Yes ma’am, it’s a secret wound that brings me to this blue Swiss ball.

    A secret wound I’m obsessed with.A secret wound that I keep writing about, hoping that maybe all these stories can somehow fill the holes in my brain and correct my eyes and soothe my pain.

    A secret wound that you can’t see but I absolutely, positively feel.

    And I guess, in some selfish way, I want you to feel it too.