The day I nearly lost my mind.

Not that it's a difficult stretch by any means, but....
Again with the doctor's office. I dread doctors offices because there's usually a gathering of most of my triggers in one big room.

It's Cancer and Hematology office so there's all kind of noises. Wheel chairs squeaking, chart carts hustling by, the coughers and sneezers, The usual cacophony of people interacting with each other. Some talking louder so they can be heard above the din, Then there's the mobile IV drip poles.... clunk clunk clunking across the floor.  The automatic door whooshing open and closed. People heading to the cafeteria across the hall and bringing back plates of food (omg the smells)

Just the normal every day triggers that put one on edge just ready to topple over.

And then it happens....... THE PACER. The one person who has to pace back and forth for half an hour around the foyer. Back and forth back and forth back and forth....... *KILL*  And it wasn't a slow pacing step either, it was really rapid.

I tried to avoid looking at him. Not happening.
I tried thinking maybe he has some disorder that makes him restless and he can't settle down, GRRR
Back and forth back and forth back and forth.

Maybe he's just nervous. Some people pace when they're nervous. This is the Cancer center after all.
Back and forth back and forth

OMG STOP PLEASE FOR THE LOVE OF ALL THAT'S HOLY, STOP.

And then my name is called and all's well in my quiet little room by myself. Actual doctor visit went smoothly, I need more iron *eye roll*  I finally get my cab ride home after a little wait time; which is nice for a change. But knowing that I have to deal with another doctor visit the next day has me still on that razor's edge.

Only I don't..... I no sooner sat down and the next days doctor office calls to confirm my appt for which I'll need to be sedated. I'm nervous about that but dealing okay....sorta. They tell me I have to have someone drive me there and wait for me through the procedure.

I get rides by cab, I tell her this "Well do you have someone who'll be with you that can make any critical choices in case something happens?"

NO!    All I have is my 28 year old mentally disabled son who would never be able to make any decisions like that.

"You don't have a neighbor or friend that could do it?"

No!

"Then we might not be able to do the procedure I'll have to ask the doctor"

"Is this the same sedative that was used the last time I was there, because my son was waiting for me that time?

"Yes it's the same, but it's policy to have someone responsible on hand, would he be able to make those kind of decisions?"

No.

"Well I'll talk to the doctor, but I doubt we'll be able to do it."  Click and hang up.

WTF MAN???????????????

An hour later she calls back and says the doctor said "NO! we can reschedule for sometime when you have someone responsible."

You can reschedule all you want to it's going to be the same outcome. I HAVE NO ONE.

"I'm sorry there's nothing we can do then, maybe social services can help find someone for you." Click and hang up


DAMMIT YOU WANT ME TO LEAVE MY LIFE IN THE HANDS OF A STRANGER???? NO FUCKING WAY.

I'm not trusting my life to some random stranger. Not happening.

So I ended up with very mixed feelings. Joy that I don't have to endure that procedure, but royally pissed off about the 'restrictions'  

They've gotta take into account that there are a lot of people like me who just don't have any kind of support network backing them up and we need vital testing too.

What about us?

Today was not the day

I just...... ugh .....today.

I'm finding right now I need to stay away from certain sites today. My triggers are tripping all over, yet at the moment I'm calm enough, other than the shaking.
I've been having some major depressive thoughts again, and even worse... found out that sometimes my son thinks about suicide. Not that he'd actually do it but that it's entered his mind. That's distressing.

I've thought about it often enough. I've been in denial for so long, but looking back I'd have to say the thought of death was pretty much always there. Even as far back as age six I realized that I wanted to die. It's funny I always told all my doctors that the thought of suicide had never entered my mind, and that's mostly true. But the idea of just dying or not being has always been there. If I couldn't have a better life than the one I had, I'd rather just die. No one wanted me, no one needed me, Even my parents just up and abandoned me. My grandparents raised me but I never felt like I was wanted there.

But not today.

Maybe it's just the melancholia of the upcoming holiday's. I don't celebrate. Any of them. I don't feel like I'm missing out on anything. Yet I can't help but feel a bit of nostalgia for the old days. Yeah they never really wanted me there, but I was. I had some good food, occasionally got let into conversations, or I'd just catch a hint at one and chuckle quietly only to be glared at for daring to listen to them.  I wasn't invited to play the games, and hated watching the sports. I'd sit somewhere quiet and read to myself. No one bothered me, no one asked what I was reading, they didn't care because it wasn't bible centered. I wanted more out of reading.

Yet it's still there. I want to die.

I'm alone. But I have a son and a kitten. It still feels alone, unwanted, unwelcome.  I'm tired. I don't wish to exist. I have to go on though.

Growing up feeling so unloved and unwanted was hard, but I'm still here. Even if sometimes I don't want to be.

Today I'm full of confusion. I kinda miss those family get togethers not for the way that I was treated, but just to share with other people. The comradery, the sharing. The tables laden with food. I've cut that part out of my life.

People fill me with fear, they're judgmental, they're liars, they try to shove their beliefs onto you. I don't want to live that life. I don't want to live any sort of fake life.

Maybe someday, but this is not the day.

Views from a Doctors office.

I casually strolled into my doctor's office the other day. High on the joy of being able to wear heels again after an astonishingly long 10 year span.

They're dated because I haven't worn anything but flats for such a long time, because I have a crumbling spine. DDD, osteo-arthritis, spinal stenosis, collapsing discs between the vertebra, with bone on bone pain.

But I thought "WHAT THE HELL?" It's just to my doctor's office, only a little walking needed. I won't be in the heels more than 2 hours.

It was amazing. I felt more confident and taller. So much taller. I'm tiny (5'2") and round (but I'm losing some of that)

So as I'm waiting I notice my usual SPD, Misophonia and shades of Irlen syndrome ticks kicking in. Out of the corner of my eye I see her: the hair twirler, chatting away on her smart phone in between chomps of gum. 

Then I notice the snifflers starting, a few coughs, throat clearing, nose blowing noises. The lights are dim but numerous which counters the effect of the dimness. I can't read magazines under these circumstances.  And then the worse.... it starts gently, quietly...... the cacophony of noise as a mass group of people begin to chat. They're discussing religion and choirs and such. Not an unusual topic really for a Cancer center. What ever gives you peace of mind, right?  

Well not me. I hate this type of conversation passionately. As I've said numerous times before I was raised in that type of environment and glad to have gotten out alive as one would say. I find these topics distressing as I've run away from organized religion as fast as I was able to go.  Others may find peace, but I just see the meaningless of it all. It's literally running on blind faith in something created by man.

Time to plug in my MP3 player to drown out the noise behind me. But then I can't hear if they call my name. So one ear plugged up and one out, trying not to let the babble behind me work under my skin as it so often does.  

It's also now about 45 minutes past my appt time. Finally I get called back and wait in the tiny room for another  ..................um 45 minutes. 

So here it is an hour and a half past my appt time and I'm getting frustrated beyond belief. I'm not a patient patient. I hate being left to wait.

Finally released from doctor care with a 'free from cancer' clearance. Down stairs a player grand piano is tinkling away softly in the lobby.  MP3 time again.  Almost in the clear until a woman in a wheelchair starts moaning and mumbling. It grows in volume as they usually do. Soon she's nearly screaming and flopping her arms around.  Her transportation soon comes and whisks her away, but I'm left thinking. Her outbursts didn't bother me as much as most other noises. Why?   Perhaps that one little rational part of my mind that's usually overcome by sound and visual stimulation realizes that the poor woman simply can't help what she's doing. There's something faulty in her wiring and I can deal with that because I'm wired wrong myself. Who knows perhaps I'll end up being her. No one knows.Oddly enough I'm able to ignore all but her most vocal outbursts. But I don't give the same leeway to others who make noises and sights that trigger me into a meltdown. Their habits and outbursts are controllable to some extent.  A baby crying doesn't know better but the pitch and volume of their screams assault my hearing and overload my senses. The running uncontrolled child being ignored by it's tuned out parents is still a controllable situation. The hair twirler: unconsciously done gets a half pass, but the gum chomping and cell phone use that's controllable, and unnecessary. The god fanclub behind me, while annoying could have kept it down. Their enthusiasm got the best of them. Understandable to an extent, but non the less annoying. 

Doctor appt survived with a few mini meltdowns. But I guess knowing that my blood is also now cancer free is good. They're still trying to find out why I'm so anemic despite being on an iron supplement.

I really dislike going out because it's always so painful. I'm just glad that my time in public is limited to doctor appts and grocery shopping. 

Something I HATE

I hate when others will tell you "Others have it worse than you."   Ya know what? Fuck you. Someone else may or maybe not having it worse does not negate what I'm feeling.

This is one of the reasons I don't post a lot of my problems on FB. There's always that one who's gotta throw that tired, overused line out there.

First of YOU do not have any idea what all I'm going through. You don't know what silent, invisible illness's diseases and syndromes I personally deal with.

This is actually a very mean thing to say to someone who's a chronic illness sufferer. Each person's own personal struggle with what ails them is their own private hell. You don't compare it to someone else. No matter if it's true that someone else has it worse. When you tell a person that you are making them feel little and unloved, not special. It's saying that what you're dealing with doesn't matter, after all someone has it so much worse.

Don't you think we know that? Maybe that's why a lot of chronic sufferers don't open up about what's all wrong with them. They don't want to be judged, they want a little understanding.

Don't be so dismissive. Understand that we know very well there's others that are worse off. We care but we're more concerned with our own personal misery and just want some simple understanding.

It's not fair to make that comparison.

Weird side problems with SPD

I think..... I don't know I'm still figuring this out.

My son always wants to get me gifts for the holiday, I tell him it's not necessary but he insists. This year I found a solution. Buying coffee cups on ebay. I've gotten a couple of nice ones so far and they're tucked away in the closet to be wrapped later.

But I've hit a snag.  I'm finding some triggering things that made me sit back and go "HMMMM!!!!"

I'm looking for a specific type of mug. Abstract or floral patterns are great. Ones with company logo's are fine. I can not abide the ones with faces on them. The ones in the shape of jolly santa, or shaped like a fish where you'd have to drink out of the mouth...... UMMM NO.... even the ones with cartoon characters make me uncomfortable.

Looking back I can see that I've always had plain or floral pattern ones and strictly stayed away from any 'face' type mug. I never knew why, now I do.   I think this goes along with the SPD pattern.  I hate to see people eating and  the sounds bug the hell out of me. I avoid looking at people eating it's gross. But to drink my coffee out of those type mugs   NO WAY IN HELL.  

I'm getting upset and flustered looking for the right kind of mug for cripes sake.  I don't like being like this.

I'm an SPD Adult.

A long time ago, in a galaxy far, far away. There was a girl who wasn't good at anything. She was shy and awkward and never fit in anywhere. By the time she grew up and had a child of her own she felt she was the most worthless piece of trash in the pile.

Noises bothered her, no one understood. She spoke proper english all the time, and got taunted for the funny way she spoke. She didn't make friends easily. People would pretend to be friends only to turn around and play with her feelings or tease her behind her back.

The force was not strong with this one.

She often wondered why she never fit in. Why some things bothered her so much that she would break down in tears daily. She didn't understand the way things worked sometimes. She felt out of place and wrong. Born in the wrong era or time.

One day when she was old and decrepit she came across an article about a child with sensory processing disorder. Things suddenly clicked. Someone suggested she read the book "Too loud, too bright, too loud, too tight" by Sharon Heller PhD.  So she ran to the Amazon site and bought a used copy.

Once she started to read the world opened up. Suddenly her world made sense. She wasn't weird after all. She was wired wrong. It WASN'T her fault that she didn't fit. It had a name. And so did some other 'quirks' that she had.  They all had names. They all were real. There was some sort of balance in the force after all.

Misophonia,Phonophobia/Ligyrophobia, Irlen syndrome, Dyscalculia,  SPD. depersonalization and derealization disorders. Depression, Bi-polar, PTSD, Panic/anxiety, ASD (aspergers) ADHD. Most of these are recent realizations. I've suffered for years before with the depression, bi-polar, PTSD and panic/anxiety. All the others are not new symptoms but things about me that have actual names that I can give them.  I'm working with my psychologist on these little quirks of mine.

These sound like silly things to a 'normal' person but these are the things I struggle with on a daily basis. I'm not healed or cured by any means. It's a long hard journey. 

I now know why I was so uncomfortable around people, why sounds or brightness bothered me, why smells would make me sick, why some food tasted wrong or felt wrong.

I have a long way to go and I'm trying my damndest to be strong. I know I'm not, I'm weak and prone to times of massive self loathing and self doubt. Negative seems to be my default setting in my mind. I always see the negative in a situation. Like the rest that's going to take time.

I have cut out all the toxic people in my life. I did it for my own mental health. But I'm not brave and I sometimes wish I had them back just to have someone to talk to even knowing that all I would get from them is to be put down and tortured more, I don't need that. I'm better off without them.

I've found a wonderful group of people who have similar problems. That's helped too; knowing that I'm not alone.

I'm an SPD adult.

Why I stay emotion neutral.

I don’t believe in love, and the negative emotions are difficult for me to deal with. All I feel is anger and fear, mostly aimed at myself.

I have vague memories of my abuse.

Mostly done by my stepmother….She tried to kill me several times. I was under the age of 3.

• I went to visit my grandmother who noticed that I had marks around my neck. I said that Kay strangled me.
• I remember standing at the top of the long steps and suddenly I was at the bottom in a heap.
• She used her dogs to terrify me. They were attack trained German shepherds.
• One day I thought I was helping to beat the rugs and was using a broom. She tore out the door, grabbed the broom out of my hands and chased me around the yard, hitting me on the head, neck and back. 
• Gave me dog tranquilizers to keep my quiet when my grandmother came for a visit.
• Couldn’t tolerate combing through my long curly hair (it was down to my waist) So she used the dog clippers to shave my head bald.
• She beat me for any supposed misdeed.  Even for things that her son had done. I got the blame and beat for it 
• Every time she gave me a pill, I’d spit it out and it would fly across the room, she’d smack my face and force the pill down my throat.

One of my dad’s other girlfriends also tried to kill me one night when I was staying over so he could have his “visit”

She came in to tuck me in while I was already asleep…..placing the pillow over my head and tucking the sheet and blanket in tightly. I woke up and panicked. I cried for my dad and he undid the blankets. We left soon after that.

I remember the things happening but nothing of what happened afterward. I have huge memory gaps.

I eventually went to live with my grandparents. My grandmother would tell me I would be sitting on a rolled up rug that was in the living room, watching tv and I’d just pass out suddenly into my cereal. I don’t recall this.

Things weren’t necessarily better. There was no such thing as mental illness unless it was profound retardation. With my grandparents and family it was all solved with church, the bible and prayer. None of this worked for me.

I hated church. I was different (now finding out about aspergers) I didn’t fit in there because it just never felt right. I was bullied by the other kids, and ignored or blamed by the parents. The other kids would make fun of me because I was different and always trying to fit in but they wouldn’t let me. Some of those same kids went to my school which is a whole different level of torture. But I never felt safe in church. It all felt so fake. I no longer have anything to do with religion. It’s not a safe place to be.

School: What a living nightmare. I couldn’t escape the bullies because they lived down the street, they lived next door. I was a walking target from the moment I left the house. Yes it was mostly name calling and that may seem trivial, but it never let up. Every day all day long the names would flow. Or I’d get shoved, or tripped on the steps. My hair pulled, my cloths pulled and undone.  They made fun of the way I looked, the way I dressed, the way I talked, the way I walked, how my hair looked, my glasses, my weight was the biggest thing. I got made fun of for the lunches I brought from home. The lunchbox I used, the way I decorated my notebooks.

Maybe I was too sensitive. I was awkward I didn’t mix. I didn’t get invited to people’s houses. I was terrified to have people come over to mine because my grandmother would start preaching at them. No one wanted to hear that. I had no friends. No one who had my back.

Lonely. All alone.

And then the family…. the moral, upright christians who would give the shirts off their backs to anyone but me. I was an unwanted accessory when I had to live with my grandparents. My aunts and uncles treated me like a slave. I wasn’t allowed to play with their children’s toys I wasn’t allowed in their room, unless the kids were there of course. I wasn’t trusted. Had I done anything? No I just existed. They didn’t like my mother, so they didn’t like me.

I had to beg to visit on sundays so I’d have someone to play with. or beg them to come visit me. I didn’t have much so not many wanted to come to my house.

At the family gatherings I got put to work setting things up or washing the dishes all by myself. They didn’t involve me in the games and discussions. So I’d sit at the table and pick at the left overs. Only to be accused of stealing food.

But if some missionary or downtrodden person needed help they were first in line. Completely ignoring the ghost in the family. They even had a meeting one time *unknown to me* where they sat down and tried to decide what would happen to me if the grandparents were to die while I was still young.

Not ONE of those so called loving christians wanted anything to do with me. I’d have probably been left to live on the street. Underage. They didn’t care as long as they weren’t stuck with me.  I was told this to my face at one holiday gathering by one of my cousins. I was gutted.  I knew my place in life and it was not with them.

I never received hugs and kisses. No affection at all.

So yeah I don’t believe in love. I do the best I can with my son but I know it’s not enough. But I was determined that he wouldn’t grow up like I did. Every one tells me how loving and caring he is so I guess I managed it.