Blindness

Part 1 of 2 I’m sitting here sipping an iced oat milk latte in weather that’s way too cold for that business, wondering how to make you care. So, as I dial up my insulin pump to cover for the carbs in the drink, I’m distracted by the mammoth task trying to make you care really is.

Maybe if I tell you about when I stood in front of a doctor, my nightgown hanging off my pointy bones, unable to register his words with all the nausea, headache, and dizziness whipping my brain into mushy potatoes, then you’ll care.

“Go straight to the Children’s Hospital. Don’t wait for an ambulance. It will take too long.”

I don’t remember most of the car ride, as consciousness came and went, but I could tell my dad was racing against…something. It must’ve been important. I hadn’t known the car could go so fast.

White coats and blinding lights and I.V. pokes followed. Somehow, I qualified to lie in the dimly lit room of the ICU next to a little boy who’s bandaged head oozed through tire tracks after being driven over by a car. My nine-year-old brain couldn’t compute that my life hung in the balance just as much as that three-year-old’s.

Will you care if I tell you about the time I stood in front of a nurse with a clipboard as she pumped me full of liquid using a reverse catheter and then asked me to cough? She then made notes as I peed onto what looked like a dog-training pad because my bladder couldn’t hold it in. As I wet myself and the floor, mortified, my eyes couldn’t hold in their liquid any more than my bladder could. I also laughed a little. That’s what one does when embarrassment is so powerful and you’re already crying.

It was then that I learned this disease can cause nerve damage in the most intimate of places. It turns out this hadn’t yet become my problem – that I failed the test for other reasons – but for those who’s bladder is a diabetes dud, self-catheterization multiple times a day is the current answer. Yes, even while you shop for new jeans at the mall, someone might be behind the disabled stall door inserting a tube into their urethra just to relieve themselves. Their life depends on it. Not all disabilities are visible, after all.

What if I told you that my uncle Ivan, who after being diagnosed as an adult and lived with this disease for many years, needed his leg amputated? It was that or die. After the surgery, he recovered and then hobbled on his prosthetic leg up into the combine to continue harvesting his wheat crops. I stood beside him at the hospital two years later as he died from another complication: heart disease. That’s how long diabetic amputees usually live after having a gangrenous limb removed: two short years.

I’d flown in to Winnipeg from England just in time.

“You made it,” he said in a feeble, scratchy voice.

“Yes, I’m here,” I said softly, near his face.

Ten or fifteen minutes later, he took his last breath.

How about the time I lay on an operating table, with Dr. Leight and his headlamp hovering above me in the dim room? I couldn’t have general anesthetic because eyeballs move in REM sleep. He needed me awake as he first froze my eye and then stuck a vacuum into it to suck up the blood that was causing my blindness. I could see the vacuum from the inside, back and forth, back and forth. Had I died? Maybe purgatory was real after all, with a creepy clown house level of strange? Or maybe this was Hell, a final, tortuous, un-resting place. A couple of months later, when my other eye bled, we repeated it all. This time, though, I felt the tools as they cleaned-house.

What about when my stomach and intestines stopped doing their job moving and breaking food down, separating nutrients and waste? Autonomic nerve damage had struck, causing gastroparesis, a rare complication of diabetes. That’s when I had a machine implanted into my belly wall, with wires wormed up through my abdomen and sewn into my stomach. Sounds like a solution, right? But instead, it felt like a butcher’s knife floating around my side slicing me up every time I ate a bite or two. I slowly starved, weight falling off my frame. Why? Why hadn’t this futuristic device done its job?

The doctor ordered a test that should have happened before the implantation. There I sat, barium oozing out of every orifice after being pumped full of it, as a doctor and his cohorts cheered me on.

“Push! Push! You’re doing great, Susanne!”

There I sat, on a portable commode in the center of the room, x-ray pictures being snapped as I defecated in front of an applauding audience. Hysteria grabbed and shook as I laugh-cried at where this disease had brought me: medical-test rock bottom. Somehow, it made it worse that he’d said my name as he hurrahed.

They confirmed gastroparesis and intes

Hi,

I'm here becaause my daughter has been suffering FND symptoms for 2 years. Initially numbness and tingling, but symtoms soon moved on to blurred vision, double vision and then blindness, hearing loss, mutism and paralysis of limbs.

FnnD bouts have lasted seconds, minutes, hours, days and even upto 7 months before recovery

One thing that is most common is that smy daughter will recover and go to bed symptom free, but if a new symptom or bout of symptoms occurs it does so when she wakes in the morning.

We are told FND occurs when her stress bucket overfills, because of too much stimulus, but this seems to mostly happen when she's asleep, so is able to cope consciously, but it all seems to fall apart in her subconscious.

Has anyone experienced this?

Looking to widen our awareness of FND, as we currently feel very isolated and even with the help of a pretty good Paediatric Neurology Psychologist, we still feel overwhelming underinformed about the world of FND.

#MightyTogether

Cornered. Hopeless. BPD has ruled and ruined any chance at life for me. My dad was an undiagnosed Borderline. I was his rage’s favorite target. My earliest memory is age 3 hiding in a closet as he rampaged so he wouldn’t find me. He did. My inheritance was an even worse case of BPD along with major depression and extreme anxiety.

I’ve been on every iteration of every psych drug since 1964. I’ve tried brain wave therapy, bio-feedback, DBT, CBT, two rounds of infusion Ketamine and TMS and I’ve been hospitalized. Nothing even dents this. The pain. The cycles of self harm. The suicidal ideation. The vibrating anxiety- racing heart - unable to catch my breath. The trembling. The psychic pain which leaves me curled under a blanket because light, sound, touch, it’s all too much.

My wife of almost 24 years has had enough. I don’t blame her. I’ve been unable to work for 23 years because of this disease and a buffet of physical illnesses. The entire burden of our finances sits with her. It’s so unfair. When we first married I was able to hold a job. That didn’t last. I’m terrified of her leaving - yet I can’t say I’d do different if our places were reversed.

My anger terrifies her, though the only person I’ve ever injured is me. My desperate crying when I dissolve into the world of my past abuse has exhausted her. She’s at her end and I don’t blame her having lived the other side because of my father.

Now I’ve been told I’m going both blind and deaf at the same time. Macular Degeneration and hearing nerve damage which hearing aids won’t help. I’m almost 70. I’m tired of fighting so many battles I’ve never had any chance to win.
#BorderlinePersonalityDisorder #Depression #Anxiety #ChronicIllness #hopeless #MentalHealth #SuicidalIdeation #ChronicPain #UlcerativeColitis #ChronicObstructivePulmonaryDisease #Blindness #Deafness #Abuse #PTSD

I have severe depression and C-PTSD, and I have been going through extreme levels of stress, and I am only recognizing it now. Being a full-time caregiver for my mom’s cancer treatment was rough, and I made it through without the stress I feel today. Being a caregiver to someone post-chemo and in remission should be less stressful, but it isn’t. Post chemo, my mom is realizing that she is missing her memories of the ordeal.

The first month after chemo, she slept and didn’t want to eat anything or get out of bed. I brought her meals, but she kept forgetting to eat or didn’t want food. I had to monitor her blood sugar to keep it from dropping too low. There were many times I had to stand there and tell her to eat repeatedly. Chemo pain is strange because it lasts beyond treatment. Her pain was managed with Lyrica and a narcotic for breakthrough pain. During chemo, I kept track of her narcotic consumption but only limited her to the maximum dosage per day. Post-chemo, the doctor wanted to reduce the narcotics slowly, so I had to begin the process of restricting those pills. Towards the end of the first month, she began to ask me to bring her specific meals again. Her memory was foggy, and she stumbled, grasping for words. Her cognitive abilities were impaired due to chemotherapy, but I could see improvement from the last treatment. A big scare came one night when she fell out of bed while dreaming despite a bedrail to prevent falls. She must have hit her knee on something that left a bruise on the way down. An X-ray found nothing broken or dislocated, but it made walking painful, so I had to increase her narcotics until the pain passed. My focus on getting her out of bed each day had to wait a bit longer.

In month two, her struggle with words and names became less frequent, and her cognitive ability improved significantly. As her cognitive ability improved, she noticed her memory had gaps, which is normal and can be scary. Her knee recovered, but sleep came with a new symptom of restless legs due to the chemo-induced neuropathy, so she was often unable to sleep without narcotics, which I dispensed sparingly, reminding her the doctor wasn’t going to continue the prescription indefinitely. Broken sleep limited her energy levels and willingness to get up and move around. In talking with her doctors, the key to getting stronger is getting her moving and out of bed. Towards the end of the second month, I stopped checking in with her early in the morning for breakfast and waited until mid-morning to encourage her to get out of bed for breakfast. Towards the end of the month, she was getting up at least two days a week.

The third month was scary and stressful; my mom developed a severe cough, which became pneumonia. After two weeks of antibiotics, her chest had cleared. Surprisingly, the pneumonia and cough had her sleep into the afternoon before getting up, but she wasn’t stuck in bed. I developed flu-like symptoms after a series of vaccines that lasted for a week, and it was a struggle to keep up with mom’s needs, but I forced myself to take care of both of us. In the last week of month three, I encountered an allergic reaction that made my vision blurry to the point I was only able to make out vague shapes. My doctor prescribed eye drops that worked almost instantly but only lasted about four hours. The doctor didn’t want me dosing more than two times a day, so I had to plan my days and nights accordingly. Two weeks later, my eyes were normal again. And my annual visit to the eye doctor confirmed it.

Four months post-chemo, and my mom is doing much better. She continues to avoid walking and standing unless necessary. So, I have been encouraging her to do more, using my blindness as an excuse. My mom’s doctors are noticing her cognitive improvements and have encouraged her to exercise and gain strength again so she can take her driver's license exam to resume driving. I have waited months for an audiologist appointment, and it confirmed my hearing loss and need for hearing aids.

Through all of this, my best friend went into the hospital due to appendicitis, and he has waited months to schedule the surgery due to his foot infection. His foot infection didn’t respond to treatment, so he had his toes amputated, and he is living in a nursing home undergoing rehabilitation to learn how to walk with a prosthetic. So, both of us are going through crazy times with minimal support, and we are both struggling.

I have been waiting for a therapist who accepts my insurance and will take new patients for more than two years. I believe a therapist might have been able to help me manage my stress levels. I have been visiting open group therapy sessions, but with C-PTSD and extreme trust issues, my ability to participate is limited.

#PTSD #MajorDepressiveDisorder #Caregiving #Stress

What comorbidities do you have/Things you have? I am curious about the results and overlap with so many co morbidities#EhlersDanlosSyndrome #FunctionalNeurologicalDisorder #TouretteSyndrome #Neurodiversity #ADHD #AutismSpectrumDisorder #Selfharm #SuicidalIdeation #MentalHealth #PTSDSupportAndRecovery #BorderlinePersonalityDisorder #everyone #AnorexiaNervosa #Anxiety #Depression #MajorDepressiveDisorder #Blindness #POTS #BipolarDisorder #IrritableBowelSyndromeIBS #COVID19 #FunctionalNeurologicalSymptomDisorder

Has anybody on here with these conditions been able to work/make income from home? I have been on disability for 3 years and want to eventually come off it if I can someday, but it has been so difficult to find things I am able to do.
Any responses are appreciated!

….from someone who has been there

Life can change in an instant. Just when you think you’ve got it all figured out, a curveball comes out of nowhere and completely changes the trajectory of your life. Whether it’s illness, grief or heartbreak that’s causing your life to be upended, sometimes it helps just to know you are not alone.

While I was in the trenches, I needed to know I had a support system, somebody to walk beside me through the storm. While you’re in the trenches of figuring out how to carry on, I offer you these words:

I won’t call you strong because I know that you don’t feel like you are. I’m not going to say how brave you are because I know fighting this battle wasn’t your choice.

I know this is hard on you. I see your frustrations and I know you want to give up. You are fighting even if it doesn’t feel like you are.

You can do hard things, but you won’t have to do them alone. I will walk through it with you until the end, taking it day by day, sometimes hour by hour, and if we have to, moment by moment.

You will get through this period of time. You will reach the other side, you got this.
#MentalHealth #Anxiety #Blindness #MightyTogether #Grief