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Community Voices

Medical Care Team Frustration

They tell me that knowledge should bring peace.

That your spirit will settle, your journey will map it’s way through the volcanic paths, show the pattern in unique rocky landscape of your disease. They give you a lovely speech about arming you for the responsibility of your own life and the potential they see for your recovery.

They tell you that control is a fantasy, the fogged future nothing but brushstrokes of color against a canvas of compassion. That learning to loosen your grip on the unspeakable desire to be who you were, who you dreamed of being, will make the roller coaster of life’s twists and turns much more bearable.

They say that you can be an alchemist, that you will take the junk they hand you and transform it into a feast fit for something more than the monster that stands before them.

They tell me this, that I will do these things. I do not know how. The map they hand me bleeds ink in languages I cannot understand; the paint they offer me is dried on the palette. The operator of my park ride confused the controls and we race at breakneck speeds to a picnic made of too-hot coals burned to soot and ashes.

I scream, I beg, I pray, and from me, there is nothing but silence.

They tell me knowledge should bring peace.

#ChronicIllness #MentalHealth #Anxiety #Depression #Migraine #FND #PNES #Schizophrenia #BipolarDisorder

3 people are talking about this
Community Voices

Journal Entry

I hate going to the store.

I love shopping. I owned a small business with my partner, and our very best days were work trips where the only thing we did was travel to large cities and shop for new supplies and inspiration for our business. Three-day weekends of store after store, dinners out, hotel rooms.

Even locally, I love shopping. I can wander through Walmart, walk into a craft store or book store and spend 2 happy hours, shop for clothes with the passion and eye of a personal shopper. (Actually, I did that as a side hustle a few years ago when I lived in a bigger city.)

Even now, if someone asks me if I’d like to go with them somewhere, my answer is always an excited “Yes!”

But I really hate it, too.

Now, going to the store means making sure I’m wearing my most presentable pair of pajamas. *eye roll* It means making sure my meds are full, my emergency meds are full, and that I put on my medical alert bracelet. Sunglasses, medical explanation cards, ear plugs, sensible shoes. My cane, my walker, sometimes even my wheelchair.

It means the side-eye from the people in the store about my mobility aids. The whispers about the “fat girl in the electric wheelchair.” Anxiety about open spaces, about Covid, about falling. Sometimes, it means seizures in public. If it’s someone who isn’t one of my immediate caregivers and I have a seizure, it’s stress and panic for them, or annoyance at the delays, or frustration with calling the day short because I’ve run out of spoons.

It might mean a day of bedrest, or extra pain, or worse symptoms.

I still LOVE going shopping, looking at the things, the thrill of finding a really great sale, people-watching with my best friend.

I just HATE going to the store.

#ChronicIllness #FND #PNES #Migraine #Depression #Bipolar

Community Voices

A Letter to Myself

Dear me,

I know you are tired, and scared, exhausted and overwhelmed. I see you fighting every day for small wins; for coaxing 5 more minutes of chores out of your body, for smiling when you want to collapse from the pain of it all, for one more deep cleansing breath when your mind is screaming and your chest is so tight you don’t think it can still expand.

And I know that this is all new, and strange, and scary. That none of what you are dealing with is what you were promised life was going to be. That you are doing your very best in the only way you know how.

I see you trying shove down all of those feelings, all of those worries, that daily pain. I see you pushing your body for things that it can’t do any more, and being angry with yourself for losing control of your body, your brain, your emotions. Those are such hard, cruel habits. They are what’s gotten you through 35 years, gotten you praised and stroked and admired.

But we know those tools don’t really serve us anymore. Those are for a time and a place that we no longer live in. We don’t have to do that anymore. Now, we can remember that kindness and boundaries and needs are not weakness, or selfishness. It is ok to be sad. It is ok to ask for help. It is ok to tell people when we are not doing well. It is ok not to hide our feelings from our loved ones, our diagnosis from our family, our disability from the public. We are allowed to prioritize one chore over another, to have to write a note on the refrigerator because we will forget otherwise. It is ok to turn down invitations, rather than force ourselves to attend things we don’t actually want to do, to the detriment of our physical and mental health. It is even ok turn down things we DO want to do.

We have new tools that we are allowed to use. I know how hard it is to break those old habits, how scary it is to allow ourselves things that have always been forbidden. How hard it is to unlearn all of those things.

We will not beat ourselves up when we realize we’re back in old habits.

We’ll take a deep breath, and keep trying new things, until they are as comfortable as the old ones. As many times at it takes.

I love you.

#ChronicIllness #ChronicPain #MentalHealth #selfcare #functionalneuropathicdisorder #PNES #Migraine #Anxiety #Depression #BipolarDisorder #SchizoaffectiveDisorder

1 person is talking about this
Community Voices

Too little, Too Much

I am so tired. I am in so much pain. I am so frustrated.

My chronic illnesses come with a variety of symptoms. Brain fog, paralysis, joint pain, nerve pain, migraines, fatigue, mutism, seizures, aphasia, altered consciousness, memory loss, neuralgia, dissociation, muscle spasms, tremors, and too many things that come and go too fast for me to recognize or remember.

Tonight the biggest one is loneliness. Bone-deep, soul-crushing loneliness. My life is at the mercy of the people around me and the willingness of them to work me into their life, with their time and their energy.

And while I have the things I need to survive and function, I am lonely. I woke to a quiet, empty house, and did quiet, empty things, while everyone else’s lives moved on around me.

I tried to talk to my mom about what was going on, and she was sympathetic, but disappeared mid-conversation with no word or warning. Just silence. Life intruded, and what I had to say did not put me in pressing danger, so I was shuffled aside, to read at a convenient time.

I messaged my college best friend to ask how she was, but the kids needed her attention, so I know she’s officially moved into her career as a stay-at-home mom, but not much past that fact.

On our way to dinner because w were both too tired to cook, I was trying to talk to my roommate about something to do with all of this that was... is... important and scary and very impactful for me that’s happening right now, and she turned to me and said, “I know this is important for you, but I am getting very frustrated trying to park this vehicle, and I am very tired, can you just -not- for a little while?” And she is literally sitting 5 feet away with her headphones in, ignoring me crying here as I type this.

I am just tired of asking. I am tired of watching my voice get quieter and quieter. My entire world just keeps getting smaller and smaller, while everyone else’s keeps going with more life and stress and responsibility, plus the burden of me.

I miss being held and hugged and snuggled and treated like I am the most important thing that exists for more than just the few precious moments at a time.

God, I sound like such a pity party, and I hate that SO MUCH, even I don’t want to listen to me anymore.

I just want a couple of hours with someone who genuinely wants me, wants to spend time with me, wants to talk to me, without their# entire world intruding on it like it always does. Without me looking at them and seeing them drift off because they’re tired of me. #FunctionalNeurologicalDisorder #PNES #ChronicPain #Migraine #Depression #BipolarDisorder #Schizophrenia

11 people are talking about this
Community Voices

Fall Risk

Well, this is a terrible introductory post, but hey, what can we do?

After a hard fall today highlighted issues with my ability to call for help, I need options. I fell in my kitchen, with my functional side of my body pinned under my non-functional side. My phone was on the charger, and the Alexa had too poor of an internet connection to call anyone.

Does anyone have ideas or suggestions for a fall detection system or device? I would prefer one that activated itself, and that called a selected contact instead of 911. I have relatively reliable internet, access to very reliable unlimited date, and a Samsung Android system.

If we can't figure out a good way to do this, I'm going to lose my ability to ever be alone, and I have already lost enough of my independence, I'd much rather not lose this, too.#functionalneuropathicdisorder #FND #PNES #BipolarDisorder #ChronicPain #Independence #fallrisk

6 people are talking about this
Community Voices

Living with PNES

#PNES #Anxiety #MentalHealth
About a year ago I was diagnosed with Psychogenic Non-Epileptic Seizures, at the time I had no clue what they were, all I knew is Psuedo meant fake, which really felt invalidating as it was a very real situation for me and really began to take over my life.
Now, I’ve learned enough to know to keep a log book, not to be scared, and not to skip therapy.
I’m proud to say I’m doing better and am no longer afraid of my mental health.

Community Voices

What Next #livinginfear

My Mom has COPD, congestive heart failure, and diabetes. My adult daughter has seizures daily #PNES (we think) since mid-September.  I have anxiety, depression, chronic pain, and high blood pressure.  I’ve been living in constant fear of what’s going to happen next. I can’t get my butt out of my chair long enough to clean anything or accomplish anything. Every little thing causes me to break out in tears, all while trying to appear happy and ‘normal’ to my 9 year old daughter.  My hubby is super supportive and my faith in God is strong, but it’s beginning to waiver.

9 people are talking about this
Community Voices

Had a bad seizure

<p>Had a bad seizure</p>
1 person is talking about this
Community Voices

A walk in the woods.

<p>A walk in the woods.</p>
3 people are talking about this
Community Voices

Why do I get in my own way.
So much easier to let the day waste .
Everything in order but only on the surface.
The house is clean but no one noticed.
Put importance on the wrong things.
Happy for the flitting moment.
A promising future I can not bring.
All this talent but not ambition.
Excuse me while I clean the kitchen.

1 person is talking about this