Tag Archive | sensory overload

Behind Sad Eyes, Green Eyes, Blue Eyes

I’ve had the echo of a song in my head for days and was struggling to place it. My memory gaps have hit especially hard in the musical and lyrics area. I can no longer sing along to songs I’ve known my entire life. I kept getting the phrase about sad eyes and this haunting melody, and thanks to the miracle of google I figured out it was The Who “Behind Blue Eyes”. Makes sense I made it sad in my memory since this song expresses such pain. My eyes are not blue, they are green, but they are sad, always sad, even when I smile and laugh, the sadness never disappears. I see it in the mirror, I see it in every picture, others see it too – if they actually look.

I wanted to share the song here, and I found a lovely cover instead, by Janet Devlin, who may be a magical Irish elf, her voice gives me chills. Be sure to check out her other songs when you get a chance. Her singing this song gave more meaning to me. I look a bit like her. Or I used to, a few years ago. When I visited Ireland everyone thought I belonged there, finally no one thought I was too pale. My hair was redder before the whites took over and I had to color it browner than my natural shade, because I’m allergic to red dye, of course.

Anyways, here’s the song, have a listen, then I’ll talk about why its on my mind.

I am not well. I am not doing well. I am not feeling well.

I need to find a way out of this hole. I’m not sure that this is depression exactly, as I’m eating well, exercising, have good hygiene, going through all the motions that usually stop when depression hits. Some of the grief has lifted for losing my parents so that has actually improved.

But my attitude is terrible. I’m angry, irritable, annoyed at the world. I really don’t want bothered. I’m finding every human to be a huge nuisance and I keep them as far from me as possible.

My life is difficult. I spend my days doing physical therapy, brain rehab, and vestibular balance exercises – all to keep from getting worse – nothing seems to be improving. I’m tired from this constant effort and getting nowhere. But if I stop I do decline rapidly, so I know its important. My knee complaining in its brace and my new sciatic pain is proof of that. I have to keep up my strength and flexibility or I hurt myself when I try to do something so outrageous, ya know, like walk on a slightly uneven path to take a photo of a wildflower. That was over a week ago and I’m still in so much pain I can barely walk across a room. I am waiting to see an ortho for the nice popping sound my knee is making.

Yes I’m complaining. I’m in a sorry state of mind, a dark, foul pit. I don’t like it here. But I can’t pretend I’m not here and conjure up some rainbows.

I stopped at the liquor store the other day, held the bottle in my hand, put it back on the shelf, and went back out to my car to cry. I have not used alcohol to escape or hurt myself in years. I was very close to it. I wanted some freedom to not feel like this. But I know it will hurt me, cost me loads in recovery, and cost my family too. So I put it back.

It seems my only tool is distraction in the form of video games, netflix, and sleep. I can’t keep up on the video games any more, so I play them and try not to care that I don’t do well, my reactions are so slow now, my visual processing delayed. I exist in this zombie state of tv and light sleep mainly that passes the time when I can’t do anything else.

I actually hate my life. I do not look forward to anything. I hate that I wake up each day. I try to be grateful and feel horrible that I genuinely am not. I don’t want this. Yes I know it could be worse. I could be blind or deaf or in a wheel chair. I don’t feel grateful to sort of be able to kind of walk a little.

My daughter was being silly this morning, and for a normal human this would have been silly. They were ringing a bell and placing it on each other. She got it ringing and came up behind me and touched it to my ear. I screamed in pain and lost my balance, barely catching myself on the counter. It is hours later and I can still feel the fullness in my ear, the tingling in my face, the pain in my head, and the after effects of that much adrenaline. I nearly blacked out. From a random sound near my ear. Yes the doctors have documented all sorts of abnormal acoustic reflexes for me that activate my central nervous system. No the doctors can’t do a damn thing about it. My daughter was scared to death by my reaction and I had to minimize the pain I actually felt, try to gather myself together, recover, and get them off to school with partial tunnel/slanted vision. Sometimes I’m not sure I should be driving like this, but I seem to be able to see through it as long as I’m careful. I never take chances, I wait until no cars are there before I pull out. Sometimes I can’t see well enough, and then I don’t drive. My ears are still ringing, screaming from this morning. My nerves have otherwise mostly calmed back down.

I hate living like this. How am I suppose to heal from PTSD when my world is actually hazardous to me, when ordinary objects: sights, smells, sounds – can overload my brain and ruin my day in a second? So yeah. I am paranoid. Looking for things that will hurt me, make it so I might not be able to walk or drive home. I have gotten stranded too many times. I have people relying on me, with schedules, or it might not be so bad to be patient and wait it out.

New doc adds chronic pain syndrome. Basically means I’m a nervous wreck. Yeah seems to fit.

I’ve just been stuck here too long. 3 years now since I stopped working. I’m in the middle of applying for disability which is not a fun process listing everything wrong with you. I know that’s part of this dark mood, that horrible paperwork.

Another part I still the constant stress from Hubby and this broken relationship. Most days right now my dislike and resentment for him border on hate. I have repeatedly told him I have no feelings for him and he continues to try to get affection from me. I have no where to go, no money, no family. I can’t leave him and he won’t go, so I am stuck in this house with him. We try to be good to each other, make a pleasant home for the kids while giving each other space. But then he gets lonely and “forgets” some of my biggest triggers, like touching me while I’m sleeping. He did it again this morning. Maybe another wife would like to be woken up with a foot rub, but for me it is terrifying, and I hate having to tell him to stop, and I hate the mental workout it takes me to be able to say stop, and I hate the anger I feel, and I hate the fear, and I hate the fatigue that comes afterward. Just leave me alone.

I feel like other people get a break from stupid life, get to enjoy things like games, concerts, movies, festivals, amusement parks, sports, camping, boating, painting, writing, reading.

I have nothing. I can’t tolerate anything for long. I lost my ability to create, and I can barely experience what others have created without causing myself pain. I’m trying to find balance….trying….but these scales seem tipped, not in my favor at the moment and I don’t know if my rotten attitude is blocking the solution or this is how it has to be.

Advertisements

Need a Lift?

hook-1943675_1920.jpg

Ever had your car broken down on the highway, had to pull over, watch all the other cars zoom past you, life goes on full speed while you wait for help?

That’s how I’ve been feeling every day. Watching healthy people pass me by.  Live their lives without me, at a pace I cannot keep up with. It’s not anyone’s fault now. I can’t expect them to wait for me. They can’t expect me to keep up. And so I’m on a different track, like an alternate reality, life in the slow lane.

I suppose I’ve always had a taste of this, a bit of exclusion for this reason or that. But now the reasons have multiplied, yes like rabbits, why did my mind go there, and I’m finding that I’m not really included anywhere now. Exclusion has become the rule. I am a ghost in my own life.

And just like when stranded on the side of the road, I have no escape route. My body seems to have more than a simple flat tire, not that I would know how to change that myself anyway, but someone would, eventually. Nope. I have one of those issues, that when you lift the hood, multiple people stare and scratch their heads, going “hmm, not even sure how she made it this far, what a mess in here”.

And then I think, ok, what if I do find someone that figures it all out and can actually fix me? How am I supposed to get back into traffic? After all this time just drive back in without getting run over? I think not. but that seems lightyears away if not impossible, so whatever…

OK, enough with this bad highway metaphor. you get it. Just a thought I had.

What I’m trying to say is that I’m completely worn out by all the medical tests these doctors are ordering, and all of the abnormal results that prompt more tests and referrals to more doctors. At first, doctors were saying, I need to accept my new reality, lower my expectations, this is as good as it gets. They were not listening to my symptoms but painting their own conclusions about me. I kept complaining and using different words until I got sent for some tests. I think they were thinking nothing would come of it, but let’s satisfy the crazy lady.

But then wait. She actually has abnormal reflexes in her visual and auditory system? Could this explain the sensory overwhelm she has been describing for years now that has been dismissed as anxiety? YES

Do I have anxiety? yes, not denying that, but this is different, and please give me credit to know if I am anxious or if my nervous system is giving me a similar feeling due to an autonomic response. Well they do now.

Turns out I have ocularmotor issues, visual processing delays, saccadic dysmetria, hyperreactive auditory and visual stimuli with little suppression. I have loads of other cool words I could insert from my test results that I don’t feel like looking up right now. My world is literally overwhelming my nerves. So all of the wacko, wonky CNS stuff, like feeling lightheaded, sweaty, tightness in chest, nauseous – all very similar to anxiety – can be brought on by ordinary sounds, smells and sights. More intensity means I have more intense reactions, similar to motion sickness. Its like I have sensory input sickness. My vestibular system is overloaded and confused.

Okay. So I’ve had balance issues for nearly 30 years, maybe all of it wasn’t from the spinal cord injury, but made worse from it? And the migraines are a product of a worn out nervous system trying to make sense of the world. See isn’t this fun? I don’t blame those doctors for pushing me aside, what a freaking mess.

And I know this is not written clearly. Apparently thats something I have also lost, the ability to think, recall, and use thoughts in a proper sequence. I’ve been avoiding writing much due to all my issues and frustrations and irritating red underlines on the page to correct. But maybe I shouldn’t. Maybe I should trust that whoever reads this can put it back in the proper order and you all just may enjoy a daily puzzle, who knows. See I’m still snarky so I know I’m still here hidden in this mess of confused neurons.

Anyhow I met a new vestibular rehab therapist today that has dared to give me some hope. You all know how dangerous that can be, to be given hope once you have gotten to a stage of acceptance, only to have it yanked away again. I’m so afraid to walk that line, and yet I must if I am going to keep trying to battle this and get well, or as well as possible. I could really use some support so I’m not sitting on the side of the highway all alone.