Tag Archive | balance

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.

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Reality is Sugar Free

waffle-heart-2697904_1920.jpg

Some of my doctors are better than others at providing a clear view of reality, while others offer the sugar coated version. Some are extremely confident while others provide wiggle and waffle room. I would, sociologically speaking, find it fascinating if it wasn’t my future we were discussing.

I visited one of the top spine rehab neurologists in the country yesterday. I’m glad I didn’t get my hopes up before the visit, but I am also glad I went so this can be settled once and for all.

His phrasing refreshingly sugar free, so I am going to provide a  summary of our discussion here.

Dr: What is it that you think I can help you with today? What brings you here?
Me: Well, I haven’t seen a neurologist for my spine since I was a child, after the initial injury occurred, and based on a recommendation from my physical therapist I wanted an evaluation of current status and what I might expect for healing, and if you could do anything for the other bothersome symptoms I have like stomach issues, bowel/bladder, leg twitches while sleeping, balance trouble, leg weakness, things like that. And I wanted to see if you had any information on how this might effect vestibular function or migraines. (I think I rambled on a bit actually but that was basically what I tried to say)

He gave me a good long stare.

Dr: I have reviewed your charts. I see your xray here (points to screen) and this is not a healthy spine, I would be amazed if you didn’t have balance issues and leg twitches. I saw your vestibular testing, some of that was rediculous to give to you, you have impartial messages going through half your body, of course your brain is confused by that, that doesn’t indicate malfunction, that indicates adaptation to so many years of your central nervous system doing its best.

He then did a standard neuro exam – watched me walk up and down a very long hallway, hit reflex points in knees, feet, ankles, arms with his rubber hammer, had me try to push against his hands in various positions to check strength. He noted the weakness, abnormal reflexes, difference in size and temperature of my legs.

He made that face they always do when they confirm spinal nerve damage. Even when they know, they don’t like to see it. I don’t like it either.

He seems like he wants to dismiss me, and I almost panic, this can’t be it, I waited 4 months to see him, drove 2 hours, and walked 20 min, waited an hour past my time. I was getting my questions answered.

Me: Would it be worthwhile at this point to do any testing to evaluate the nerve health, like EMG or anything else to see how the nerves are functioning now? Either to help with physical therapy or provide information as to the extent of the damage? Give me realistic expectations?

Dr: No. It would not be useful. We use those tests as pass/fail, the numbers are irrelevant for treatment. You have already failed without further testing, you have signs of severe nerve damage. If we tested you, your numbers may come out high or low, but they will come out as abnormal, which we already know, so its a waste of time and money.

Me: Oh. I see. So I was once told that I might expect some healing every 10 years or so, the rate of nerve growth. Is that still true based on recent medicine?

Dr: Only the Good God knows if you may expect some healing, but some doctors do say some stupid things, don’t they? This type of damage is not known to be reversible and at some point it may be time to stop seeing doctors and get on and live your life as you can.

I had to blink that back, totally was not expecting that response.

Me: Okay… but what about some of the other secondary symptoms. I’d really like to sleep better. Anything to help my legs stop moving and twitching? Or to keep my stomach moving along to prevent the heartburn and constipation? Or to give me better sensation to know when it is time to use the bathroom instead of watching the clock?

Dr: We don’t have any magic pills for you. Again, with the damage and curve still left in in your spine I would expect some considerable irritation and twitching. You should ask a GI about those other issues. What I will do for you is contact your vestibular therapist and add some exercises to your plan that will help with balance, make you more confident, and reduce falls. I’m also referring you to a vestibular neurologist. There’s nothing more we can do for your spine. You should know it is very strong now, between the fusion and the hardware, your spine itself is quite safe and protected within its armor. You could still pull a muscle, but there is nothing you could do to hurt your spine, even drive a truck over it. hehehe

He recommended Otago and Tinetti exercises. I looked them up and found that they are mostly for older adults fall prevention. Hmm. Seems like my CNS has aged prematurely. Here is info on Otago and here is some on Tinetti exercises, each has a pdf to download and youtube of course has many videos too.

So I guess I appreciated his attempt to give me confidence and lighten the mood. I believed him, every word. My spine is solid. The damage has not changed much since I was 12, I don’t really expect it to change much, better or worse, so I guess I can accept that. It isn’t something that needs monitored. OK. I am fine with one less doctor, really I am.

And I agree that I don’t need any more painful, expensive tests to prove what we already know. Fine. Move on.

Somewhere I was maybe hoping for some radical new treatment, something cool with stem cells, or a brand new medicine that speeds up nerve transmission, or something that filters out these random twitches, an implant, an electrode…but no such luck. Its ok. I’m ok. I’m glad I asked.

 

Riding the Waves of Mood Shifts and Intensities

 

The good news is that I have a center. Woohoo! I wasn’t sure I did, I seemed to wiffle waffle from mood to mood so easily and unpredictably. But that was years ago, and now, after practicing living in moment, I actually have a center. A peaceful place where I receive sensory data without judging. A place to experience life without fear, worry, or pain.

 

I have noticed that instead of mood swings, where it can seem a switch is flipped to change instantly, I now have mood shifts, where I gradually move into a feeling, and then stay stuck there for a bit. The bit varies from hours to days.

English: Angry cat

Yes I am still angry – why do you ask? (Photo credit: Wikipedia)

Although I don’t feel as crazed or volatile this way, and especially love getting stuck in my happy, creative, productive place, it seems I can get stuck in anger, frustration, grief, confusion, and anxiety too.

 

I asked Hubby about this, and he confirmed that he is most always centered, just a flat contentedness, and life events cause quick outbursts of feelings. Like if someone makes him angry, he is angry for a few minutes – Boom, and he is already returning back to center. When I get angry, it slowly grows and hits a plateau, then it sticks with me, like I stepped in dog doo and can’t shake it off. Sucks for anger, but I also seem to get stuck in intensely positive emotions as well, like excitement, sexual arousal, and joy. Those ones feel like I am surfing a wave, and I love it.

English: 2010 Mavericks surfing competition. T...

Kowabunga dude!  (Photo credit: Wikipedia)

I wonder again if this is how teenagers feel if allowed to develop naturally without abuse. I have seen students in stormy or joyous moods, so I think this may be true. That the intensity of the emotions make them get stuck for a bit.  Teenagers are often called impulsive and over-reactive for this trait, but I think it is a natural expression of the intensity. I think perhaps healthy young adults learn to control the intensity and get back to center sooner. Part of me hopes that I will learn this with practice too. But another part of me enjoys the intensity, of both the goods and bads, and wonders if I actually have a gift now, a freedom to fully feel what life has to offer. I’m just not sure. I’m also not sure if I’m just in touch with these feelings, and everyone actually has this capacity for intensity.

 

I tried describing this to psychiatrists in the past and got prescribed all kinds of nasty mood stabilizers (for bipolar or borderline or manic depression) that literally made me lose my mind with hallucinations and other terrible side effects. The thing is, although the feelings and mood changes are intense, nothing is extreme or manic. I still function, never lose control, and may have impulsive thoughts and fantasies of pushing people off cliffs or running away – but I have never acted on those. One of my favorite internal stress release images is straight from “The Princess Bride” where she pushes Wesley down that hill and he bounces and tumbles forever saying “Aaaas Yooooou Wiiiiiiish”. I love that so much, and have often seen my boss tumbling down a hill. See, even my evil fantasies are silly. My inner me is truly a goofball.