Tag Archive | coping

Resigned

What is this new feeling I have lately? It seems to be a new flavor, a mixture of several. I’m feeling calmer, not exactly at peace, but not so turbulent either. The sadness is still there, a deep underlying sadness that I’m sure will always be there. I have less anger.  I have less ambition and determination, less fight in me. I think this is a good transformation, or if not good as I don’t like weighing in with good and bad, lets say a necessary transformation, though it feels odd.

I think perhaps my spirit is finally broken, tamed, like a wild horse, I have been broken. Even more, I’m the wild horse forced to live out its days on a carousel. carousel-1703273_1920.jpgI am resigned to live my new life, accepting the constraints of the saddle and bridle and staying within the limits set upon me. I’ve been trying to be free for far too long. I don’t need freedom to do good. There is much I can do from here and it will have to be enough. I can be grateful to keep moving, if only in circles.

I searched for words for this feeling and I read the synonyms for resigned, I feel this is exactly where I am right now. Look at this list…tame, agreeable, long-suffering, stoical, patient, tolerant, gentle, quiet, ready…I could describe how each of these words fits me.

resigned

A few days ago this feeling settled in and said hello. I’ll describe that day here, because it has taken me several days to say hello back.

I can’t rely on my memory any more. When smartphones first came out I ridiculed people for spending so much money on a device. Now I can’t live without mine, as it truly thinks for me, reminding me all day long about what I’m supposed to be doing. So I check it as usual and see kiddo has a baseball game. No problem. No other conflicts. I know I may have to drive him, so I plan my time so that I am rested.

When he gets home from school I look again and see it is an away game at a ballpark I am unfamiliar with..and I map it and see it will take nearly an hour to get there. I remain calm as I tell kiddo we have to leave very soon. He asks for his uniform. Crap. I forgot to wash it. All my checking on the game and calendar nothing jogged my memory for this detail. So I add “wash baseball uniform” to my calendar so I don’t forget again and he has to wear it dirty for this game, luckily he didn’t do much sliding it didn’t look terrible.

I throw away my feeling of failure, no time for that. I feel calm again. Kiddo needs a snack. Make him a sandwich to eat in the car, except I forgot to go shopping, used up the bread this morning. Crap. quickly slice some cheese and grab pretzels. That feeling in my stomach again, like I should be doing better, but I have to ignore that. I make coffee while he gets dressed.

Out in the car my phone wont let me get the address for the gps. We are already late. I can’t think clearly. I call hubby from the driveway for the address. I enter it the address and pull out while it it loading. But then I can’t see the screen on my phone. I hand the phone to kiddo and ask him to adjust the brightness, I had it turned way down and couldn’t see it in the sun. He didn’t know how. What? How does he not know this, its just just his kindle, but I have no time to feel irritated. At the next red light I adjust the phone myself and see the gps is still not loaded. I know I have to get on the highway but I have no idea where to go after that. Anxiety is rising. Breathe. Its okay. I pull over and really look at my phone. I notice the cellular data is turned off…oh yeah, I did that at his last game when I was playing a game on my phone and didn’t want to use data. Crap. That has been off for 3 days.

I turn data back on and my phone blows up with all the queued MMS texts that could not come through. Crap. All that missed info – yup, thats why I didn’t know his last practice was a different time, and so much from school, but no time now to feel stupid. GPS is loading finally so I get back on the road. I don’t look at the clock. We are late, I already know we are late, and the clock won’t change that and I don’t want to feel nervous while driving. Kiddo is chatting about his school day. I can barely understand him, my head is racing and I have to focus on driving, but I say “uh-huh” a few times.

We make it off the highway, and into these terrible, but beautiful, twisty turny hilly roads. I’m getting motion sick and driving slower than the speed limit. Crap. We are so late and I can’t even drive full speed. We go through forest lined roads, past green mucky ponds, further into the valley. We make it to the ballpark, and can’t find his team, there are several fields and games. We spot his uniform color and I see the closest parking lot is full, so I continue on. We got there. Sigh of relief. He grabs his gear and heads to the field. I stay in the car.

Why do I stay in the car? So many reasons, where to start.

  1. my limp. Okay so this place is full of steep hills and slippery gravel. I did not want to attempt that steep hill and the only other way that was not so steep was about a quarter mile away and through the grass fields, still difficult. Even with my walking stick and new knee brace, these distances look like miles and miles to me, it is just so difficult to walk across. And I feel stupid, like everyone must see me coming.
  2. neuro issues. It was hot out and no shady places to sit even if I did manage to get myself down there, so I stay in car with AC running, my meds make me dangerously heat intolerant on top of the struggles I have to self regulate due to nerve damage. Sitting in full sun also triggers migraines
  3. my limp and social issues. no places to sit at all, I would have to carry my own chair which would be very difficult on the already difficult terrain. If I had ever spoken to the other parents, yes I’m sure one of them would carry a chair for me, but then I feel like I would be stuck sitting with that person and forced to be social. I can barely manage my own life I don’t want to hear about theirs, it is too much, never knowing what people might share or ask me.
  4. anxiety. If I managed to get myself down there and find a place to sit, I didn’t see any place to be quiet. Some of his games I can put a chair at the end of the line of parents off by myself enough that I feel I have my own space. But here with so many games going on at once, cars and people constantly coming and going, There was no way to position myself safely, I’d be jumpy and startled the entire time, and I can’t do that – I have to drive back home
  5. mental fatigue. I can’t pay attention to the game. Sorry kiddo, I’m proud of you for working hard, but baseball is dreadfully boring and I have no clue what is happening even when I do try to focus it makes no sense and my mind wanders. I usually bring my camera when I sit near the game but in my car I can close my eyes, read a little, play a game on my phone. And they last for hours, too exhausting to pay attention that long to anything. So I try to watch for when its his turn at bat and a few key plays when I hear the crowd get excited, otherwise I reserve my energy for the return drive

Thats about it I think, though I think I jumbled them up a bit even though I tried to organize it in a nice numbered list, hope it makes sense.

I’m just trying to illustrate how this simple task of getting my kid to his game is not simple for me. I can barely do it. I try to be grateful that I can still do it, at least be useful and get him where he needs to be. But it is difficult to watch the other healthy parents, hooting and hollering, running down that gravel covered hill like its nothing, carrying chairs and coolers, sitting and chatting with their friends, they seem to really enjoy the experience. I don’t know this, of course. I’m only giving my observations and they seem to enjoy the game and the social time with the other parents. I’m not a part of that world. I live in a different one. Am I jealous of the other parents? In some ways, yes that is likely what I am feeling. Anger that my life is so difficult. But I can’t stay there long or it festers. Acknowledge and keep moving because life does not slow down for me.

My life is often surreal. Like I’m in slow motion or everyone else is on fast forward. They walk and talk and think faster than I can. I am no longer trying to keep up.

I am resigned.

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I rolled in it. So what

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I wrote about my bad mood and bad attitude yesterday. It felt a little like I was rolling around in the mud, getting good and covered, feeling it ooze out between my toes, clump up in my hair, even crunch down on some grit in my molars once in a while.

I think that bad mood needed validation because I feel so much better today even though absolutely nothing else has changed.

But I’m generally not allowed to gripe, moan, complain, vent, or bitch. I’m supposed to roll with the punches and keep on smiling. Usually I can. But lately it has been getting harder to smile and I wasn’t sure why. The thing is, these punches, they actually knock me out, flat into the mud. Each time I drag myself back up and keep limping along. But for a little while, I’m going to stay down here and roll around in this mud. Stop hiding.

I can’t exactly go on strike, but I can lighten my load a little while I stay here and make mudpies. I’m supposed to go to an awards banquet tonight. I’ve been so worried how to handle it, how to smile for that long, how to pay attention and get out of conversation I don’t want to be in…screw it. No one needs me to eat chicken tonight. My husband can go without me while I make mud angels.

I think if I embrace this dank muddy place I’m in, instead of trying to hide from it, I’ll be much better off. Besides. Mud can be really great. Think hot springs and mud masks. Mud wrestling? Well…not my thing but hey some people like it. Adobe houses. Clay pottery. Yeah. I’m just going to stay here in my deep dark pit and see what happens if I stare at it directly.

Do you hear what I hear?

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Hearing voices. Auditory hallucinations. That means I am crazy, right? That I have finally lost it, gone over to the land of no return, no more reality for me?

That’s what I thought the first time it happened. I was terrified. I was scared to tell anyone. I wasn’t sure what really happened. Maybe it didn’t really happen. Maybe I was just thinking something, I didn’t really hear something.

But then it happened again. And again. And umm okay I thought about telling my husband and psychiatrist. This was about 15 years, before I was diagnosed with PTSD. With my brother’s history of schizophrenia, we were all sure that I was starting some psychosis. I was put on anti-psychotics. The meds did not make the voices stop, they made me sick, anxious, and caused visual hallucinations. The doctor said that was impossible and was simply my psychosis advancing. I was given more meds to try. I played along for a while, until some combination of the meds and my situation made me give in to suicidal urges. My suicidal ideation became a concrete plan and I made the first of several attempts that year. The only times I have ever attempted suicide I have been heavily medicated. Otherwise, I only have this ideation, this distant aching thought that I wish to be nonexistent, which is VERY different from looking up lethal dosages.

Anyway, back on topic, I realized I have not talked here about AH – Auditory Hallucinations and that they can be part of PTSD. I wanted to share my experience and some of the research I found. Here are some links to read more about AH with PTSD.

http://www.counselling-directory.org.uk/hearing-voices.html

“In the past, when someone uttered the phrase ‘I hear voices in my head’ the immediate assumption was that they had a mental illness such as schizophrenia or psychosis. These days however, we are more attuned to the nature of auditory hallucinations and understand that it is a complex subject that has many different causes. There is also far more support and understanding for those who experience voices, hopefully showing that they are not alone.

The experience of hearing voices differs from person to person. Some people hear the sound through their ears, just as if someone is speaking. Others hear the voice from inside their head. There may be one voice or several. The voices can be encouraging and supportive or malevolent and intimidating. You may recognise the voice as someone in your life – or it may be an entirely new voice.

Some people believe they can hear other people’s thoughts, while others may feel threatened by their voices. In some cases, the voices try to tell people what to do which can be incredibly frightening for the listener.

The important thing to remember is that admitting that you hear voices in your head is not an admission of insanity – it is an important starting point to help you regain control.”

http://blogs.plos.org/mindthebrain/2013/04/24/hearing-voices-ptsd-and-auditory-hallucinations/

Among combat veterans with PTSD, 30-40% report auditory hallucinations (AH). AH are more frequent in combat veterans with chronic PTSD and it has been suggested that this may reflect a distinct subtype of PTSD that may be under recognized for two reasons: first, patients are reluctant to report AH and, second, more emphasis has, traditionally, been placed on the intrusive images associated with PTSD and less on intrusive auditory hallucinations.

It is important to recognize that such patients do not have the overt changes in affect or bizarre delusions characteristic of other psychoses e.g. schizophrenia.  AH in PTSD appears to be seen more in veterans with higher combat exposure and more intense PTSD symptoms and who report more severe symptoms of hyperarousal. The AH are typically: ego-dystonic; contribute to an increases sense of isolation and shame; associated with feelings of lack of controllability; consist of combat-related themes and guilt; non bizarre; not associated with thought disorders and, overall, more refractory to treatment interventions.

http://www.medscape.com/viewarticle/842449_2

“Auditory hallucinations are present in several nonpsychotic disorders, as well as a proportion of the ‘normal’ population.[23] Auditory hallucinations in PTSD may be chance occurrences, which are perceived as threatening, secondary to the heightened arousal state of PTSD. Misdiagnosis is likely to persist without a longitudinal approach and understanding of the underlying biological basis for the illness and its later course, as the clinical presentation is difficult to differentiate on a cross-sectional basis. Symptoms such as hallucinations have been shown to be clinically indistinguishable in adolescents with PTSD or a psychotic disorder.[24]”

http://www.med.upenn.edu/ctsa/ptsd_symptoms.html

“Rare cases of PTSD may involve auditory hallucinations and paranoid ideation. Individuals who experience auditory hallucinations may experience tinnitus, a constant ringing in one’s ears, or they may hear a voice or set of voices that are not physically present. Individuals who are experiencing paranoid ideation are highly guarded and constantly suspicious of being harmed and harassed by those around them. When the trauma involves violent death, symptoms of both complicated grief and PTSD may be present.”

As for my own experiences, mainly I have a deep man’s voice that I hear. It is loud and startling. I usually hear it to my left, causing me to turn my head and look for the person who might have said something, but of course no one is there. It is so loud that I am startled, often I jump or gasp in reaction. The voice says horrible things to me. I don’t think the voice is my father’s voice, it sounds much deeper and raspier to me-like a demon radio announcer. It does however say things to me similar to what my father would have said – similar – but not exactly. So this voice is not exactly a flashback. I do have those too, reliving experiences, and this is different. This voice I hear I don’t leave reality, I am still in the current time, there is no visual component either. I will doing ANYTHING and this voice can intrude.

Like yesterday I was walking down the hallway and noticed my dog sleeping sweetly in my son’s room. I felt warm and smiled as I walked by on my way to the bathroom. Then I heard this deep voice, booming, almost like through a PA announcing “She is going to die”. Instantly I am filled with sadness and fear for my dog, dreading her death. She is in good health. No one is going to hurt her. I know this. So is this voice a remnant of my father hurting my past pets? I don’t think he ever actually said those exact words to me. I generated that, not remembered that.

Other times I will be talking to Hubby, about nothing in particular, and I will hear the voice say “You are a fool, stupid slut, no one loves you” or “He hates you, its a trick” or “why do you keep trying?”

Again, these voices I hear are similar to messages I received as a child, but not exact memories. So I think it is related to PTSD. Is it psychosis? Well…I do hear voices from nonexistent people. Is it a form of schizo-blahblah whatever disorder? No one knows. But it seems related.

All I know, is it sucks big time. It is getting more difficult to manage, not easier. Meds do not help, and I have tried them all. This is seriously debilitating, and makes it impossible to have relationships and be around people since I am in constant battle with the voices in my head. It is exhausting to keep saying “shut up, they do love me, I am worth it, I am safe, no one is tricking me here, go away”. I used to shut off the voices instantly – like talk to the hand. But this new therapy program wanted me to listen to them, to sit with the feelings, to explore the thoughts. Okay, great, so I have done that, and now I hear them more than ever and feel everything the voices want me to feel. Is this supposed to be better? I am not sure how long this stage is supposed to last. No one has an answer for me on this. I am supposed to keep using my cpt tools and working through it without losing my mind completely, which I actually do fear will happen one day. The mental exhaustion of sorting through all of this is too much sometimes. That’s when I choose to zone out and mindlessly watch TV for hours on end.

So I have been paying more attention and I think I hear other sounds too, not just the voice – like squeals, cries, wind, footsteps, scrapes, other creepy there might be someone in your house horror movie kind of sounds. That might be the hypervigilance producing something for me, since I am always on guard, once in a while it gives me something to hear. Research thinks these sounds and AH are related to dissociating and flashbacks somehow but the mechanisms are not entirely understood in our amazingly complex brains. I think I used to listen so carefully for signs of danger, and now I generate sounds of danger similar to memories.

I am resisting a slew of snarky comments, about how fun this condition is for me. You get it. But I am curious if anyone else hears stuff too. Don’t worry, you can tell me, I won’t tell anyone, and I won’t think you are crazy, or at least not any crazier than I am. I would like to know how anyone copes, manages, handles it, other than simply waiting for it to go away.

Too many words

When it takes me too long in between posts, it is not for a lack of words, rather I have too many.

My brain is as busy as a big city highway, thoughts rushing about, crashing into each other. Therapy has stirred up nightmares and flashbacks at an alarming rate. That, along with otherwise not sleeping has increased migraine frequency again.

My daughter is okay. I hate that she has scoliosis and that my genes gave it to her. It is worse than I thought it was, her s curve and rotation already raising her one shoulder and hip out of level, twisting her ribs so one side of her back appears rounder than the other. But only if you look closely and know what to look for. Dr recommended she start doing yoga to stretch and strengthen her core to combat the sore muscles she already has. Then we go back in a few months for new xrays, and hope the curve has not progressed much. Thats all we can do.

I managed the day of her checkup though I had several flashbacks. It could have been better, could have been worse. We went in through the garage, not the front door where AF used to drop me off. We stopped at the cafe for slow paced breakfast. Upstairs was heavily remodeled since I had last been there. That was good. I did feel triggered looking down the hallway where I spent countless painful hours of physical therapy with no gain. I did feel triggered in the large waiting room, recalling times waiting there by myself, times when both parents came and were so busy fighting I had wished I was alone. I knew the view out that huge window well, as it took me out of the waiting room to watch people walking down below.

It was actually comforting to meet Dr junior. I had forgotten how much I liked and trusted his dad as a child. Junior has the same amazing warmth and accent. The look on his face was entirely priceless when he asked who performed my surgery as a child, and I said it was dear old dad. I decided not to tell him it didn’t go so well, as I don’t fault the surgeon for that. 

I did feel sick to see my girl’s body distorted by this horrible disease. No one really knows a cause yet. 30 years later and we can’t prevent it from permanently deforming us, slowly twisting and winding us up as we grow.

So that would have been enough for my nerves. But no, that’s never how it works. My FIL was also at that hospital that day, having surgery. So we walked through the maze of buildings to visit with MIL and deliver the cards my kids had made. I was losing touch the longer I walked. I kept seeing my girl, who looks so much like me, and lost my bearings, struggled to stay grounded more and more.

We sat with MIL far too long. I asked hubby a few times if we could leave. We had been there several hours now, approaching lunch time, and girly was stressed and hungry. The surgical waiting room was not a good place for her. 

One woman was describing how her husband was missing his ears and chunks of his cheeks due to skin cancer. I wanted to comfort her but I had nothing in me to offer her. I wanted to run away.

Finally we left and started the long walk back to the garage. But this time the hallways looked different. Swirly. I could barely read the directions on the signs and kept getting lost. I easily lead us all there but was now confused. Hubby reached out and grabbed my shoulders. I screamed “Don’t touch me!” And looked for an escape. A few nurses and doctors asked if I needed help. I wasn’t sure…I kept looking around, waiting for something to make sense, waiting for hubby to take the lead, but he never did. My flashback had overtaken me. I was disoriented and scared. My only thought was avoid evryone and get to the car as quickly as possible. But I didn’t know how. I was trapped in one of my nightmares, hallways kept getting longer, people were no longer speaking english, I was struggling to walk, holding onto walls for balance, struggling to breathe but doing it anyway.

I just kept walking. Hubby and girly followed me. At hallway intersections we looked sad and confused and nurses pointed the way. Finally we could see our garage. I knew I could make it now, the fear lessened and switched to exhaustion. The final steps to the car took all my energy. Made it. Sat down. Breathing can resume.

I don’t recall leaving the garage or entering the highway. At some point I ‘woke up’ and remembered the suggestion to go somewhere fun. We needed lunch so I asked girly if she wanted to go to the mall. Sure!

We ate lunch and headed for her favorite store to search for a black dress for choir. I was still exhausted, struggling to stay grounded, but this seemed important. As we entered the store, hubby disappeared. He often does this, wanders off to look at something. So I waited. He was taking forever, so I checked my phone…dead. crap. Looked around and still did not see him so we kept shopping, but were forced to stay in that one store. She tried on a few things, no luck on a dress. Finally I spotted hubby sitting by the fountain outside the store. What? How long has he been there? I tell him I had no idea where he went. I tell him I don’t know if we should buy anything. He gets all defensive saying he thought we were better off without him and he didn’t know where we went and hows he supposed to know…

I was too tired for that. When I have flashbacks I have trouble making decisions, using math, deciding worth. I wanted his help but obviously was not going to get it. I told girly we would keep those things she liked in mind for another day but we should probably get going. She was fine with that.

When we got home I thought I could rest and recover. Hubby had the same idea. He fell asleep and left me to make dinner, monitor homework, manage bedtime. 

The next day he said he thought everything went perfectly. I snorted a bit, surprised by our different impressions of the day. He asked what I thought could have been better and got angry when I made suggestions, because now I was attacking him and pointing out everything he did wrong. I wasn’t even going to bring it up, he asked. I wasn’t going to bring it up because it doesn’t help. I can’t rely on him, in those moments, I am forever alone.

Preparing for triggers

Tommorrow will be a day full of unavoidable triggers. And other stresses too. I am taking my daughter to the back specialist. Upon my insistence, I asked pediatrician for an xray. She has mild scoliosis.

Breathe. It is mild. It may stay mild. 

Because I want the best for her, I am taking her to the same place I went. Recently and as a child. But now we get to go to the pediatric office, the actual same place I went. Even better, better for her, worse for flashback potential, her Dr is the the son of my Dr back then. Same name, same floor. I lost it a few months ago when I had to go to the same building for radiology. 

I have to keep myself grounded and present. My daughter may see a full blown panic attack or flashback for the first time. But I have to be there for her. It would have been better for me to choose a different dr, but not best for her.

So I can do this. Somehow I can do it. I already feel sick, a migraine. Nightmares for days have kept me from resting. I am so tired.

Then other stresses combined as usual to make this week even harder to manage. And yet I must. More later on the other stresses, too much to write now

You can’t force an uneasy mind

When anxiety takes hold, or even anxiety’s precursor of overthinking, the mind is in a dangerous system overload. A talented pilot can recognize the danger signs and possibly pull up out of the death spiral before stalling out and nosediving. But even the most talented cannot be forced through the anxiety, forced to overcome the fear, to get over it, or snap out of it.

Pulling yourself up out of the grips of anxiety takes awareness, self compassion, and plenty of practice. The earlier you catch it, the easier it is to apply the brakes. At some point, it is a lost cause and all you can do is wait it out and breathe. 

The worst thing that can happen to an anxious person, is the addition of more stress by expressing frustration, disappointment, even anger. Yelling and asking the anxious person to rush, to do what they fear, will escalate the anxiety and cause further delay. An anxious person already feels like a freak and would love some gentle, quiet support, some sympathy and understanding, someone next to them so they aren’t so alone.

We feel so alone, so often, and we hate it.

emotional overload, again

I started outpatient physical therapy to help strengthen and balance my back and legs after my surgery. I knew this was likely to trigger flashbacks from teenage PT, me learning to walk again after my first surgery. And it did. It was hard, but I think I managed well. I made sure I had a female therapist when I made the appointment to decrease my anxiety about someone touching me. I kept myself grounded by telling myself the year, that I am a mom, listing things I could make for lunch.
Session went well, whenever I was triggered, I just brought myself back and instead of telling myself I am a stupid freak, I told myself it was understandable this situation was triggering.

Big trigger when she videotaped me walking. Teen PT did that with me in a swimsuit. Teen lawyers did that to prove my freakyness for AF’s malpractice suit against my surgeon. Both were horrible, humiliating times I was not in control and no one could help me. But some breathing and grounding got me through it. I know she noticed something wrong, but I think she thought I was embarrassed, tired from our workout, but not triggered. She assured me my face would not be in the video, only legs for gait analysis, and that it will help her design my care plan.

She was completely awesome. This PT lady was smart, had empathy, had no trouble with my questions or my special requests.

Near the end of the hour, we started discussing how my leg previously never had any muscle retention. That I worked furiously each day to keep it from sliding backwards, yet I woke up each morning weaker again, no growth, no tone, because of improper nerve signals.

She tested my spatial recognition, my proprioreceptors by forcing me to look away and keep my hands off my leg during the motions. It feels wrong, and a bit dizzying, but if I concentrate, I can do this. This is new from the recent surgery decompressing the spinal nerves. 

PT lady said with this, it is possible that new muscle can now be rebuilt, actual progress and forward potential after being stuck for 27 years. I am still too afraid to hope for this, even though I am already seeing small gains since the surgery. Seeing should be believing, but I know too much that seeing can be deceptive also.

Hope for someone like me, does not come easily, and has a huge cost when things don’t work out. So I remain safely curious. Curiosity keeps me moving and trying – without fear of devastation.

Except I felt a little hope with her words. No matter how much I tried not to.

Then I felt foolish and afraid for feeling hope.

Then I wanted to share my hope with my mom.

That’s when I brokedown. Too much. I made it to my car and cried. Oh mom, how much I wanted to share GOOD news with you….no matter how troubled our past, I do know the pain you felt when I was paralyzed. I somehow thought this news might heal some of that pain, bring us closer. Perhaps not, but I will never know. Just know I forgive your mistreatment of me when I could not walk, I think you did your best to cope and only had denial. 

So I started PT, had several flashbacks, remained grounded while being touched, let myself feel some hope by accident, and I missed my mom.

A full day…all in an hour.