Tag Archive | acceptance

Reality is Sugar Free

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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.

 

Owning It – A step past acceptance

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I always say when you are open, the universe speaks to you. I am hearing one message loud and clear being repeated from multiple sources. It’s starting to sink in and take hold and I hope I can explain this clearly.

I’ve always had something to struggle against. An illness, a disease, a deformity, a disorder.  I’ve always accepted each one as it is diagnosed as a new part of me to struggle with, fight with – and HIDE!! I was taught to be normal, above all costs. Never let anyone know you are suffering. Never let anyone know you are different. Never let anyone know you need help. It is shameful, horrible, disgusting. It is whining, weak, pitiful. No one will want to listen or be in the room with you. No one will accept you with all of your flaws. You must only present a perfect version of yourself, like an edited photograph representing you instead of your real you.

No one can see you in a wheelchair, a brace, a bandage, a pimple, a scar, if you’ve gained a pound, if your nose is red from a cold. No one can see your pain or fear or confusion.

I followed those rules most of life, somehow I actually did. I hid my disabilities like a good girl. I know I shared my difficulty with having to use a can a year ago, in public. It took everything in me to show people I needed that, something so visibly wrong with me, and of course the comments came, “you’re too young to need a cane…” remember that?

OK, so my doctors are now recommending that I get special tinted lenses in my glasses, and special earplugs. The idea here is that my migraines are caused by overactivity, overexcitability, too much stimulation of neurons and these aids can help reduce sensory input, reducing triggers and sensory overload, meltdown and confusion. Makes sense, I struggle when shopping in bright lights or surrounded in a noisy crowd.

But my first thought was, hell no, I don’t want to look like a freak. What if people notice? What if they ask me about my weirdo glasses? Can I handle that?

I’m working with this one major stuck point still as it runs deeply and is multifaceted, this feeling of being a freak and needing to hide flaws. It is a core belief, reinforced by my entire family, and sadly, by most of my adult relationships as well. People do not often respond positively to people with special needs. But that doesn’t mean I should be afraid to have special needs. I started to accept that I do – but can I own it?

Here’s the difference. And wait for it, it was explained to me by my MIL!!! I was telling her about these lenses, and tentatively expressed my fear of wearing glasses that would make me stand out. The ones I need are likely a deep rusty rose color (and yes I’ve already explored all of the implications that my doctor is literally prescribing rose colored glasses, so, umm, anyway) and would be quite obvious. I asked MIL, what if people ask me, why are your glasses pink? She said “Tell them you like pink. Get some other pink things, a pink hat, flower, bow, necklace, color your hair pink. Own it. If they want to look let them look. If they want to ask, let them ask, Who cares what they think. If these glasses help you feel better…that’s all that matters, you are all that matters, not them. Just own it. Be someone who wears pink. why not”

I actually cried. My mind was blown. I have never heard such a message of acceptance in my entire life. And to come from someone that is closest to my mother figure, well, it has broken something in me. I needed someone’s permission I think, and she gave it to me. I can be weird. I can like pink. I look different. why not. who cares what they think?

Can I do that? Can I stop hiding? Can I own it? Oh my god I don’t know but I know I want to. Can I be the girl that doesn’t care what I look like when I dance in the rain, all alone? Just be her, own that feeling I get when I’m hiking and carry it with me everywhere? How do I start? I just start. I stop hiding.

I say hello world. This is me. I am not apologizing any more.

OH!

I forgot to add the other message I received from the universe. I was listening to music this morning, and put on Colbie Caillat to see what I got in the youtube mix. She always makes me happy. First song that came on was “Try” and I wasn’t writing yet, so I watched the video, with all these beautiful, unique women, and woah did this message hit me hard. Tears were unstoppable. This is exactly what I needed to hear coming from one of my favorite singers too. So simple – yet beyond powerful. I think I’ve heard the song before, but never absorbed it like today.

You don’t have to try so hard. to belong. Do they like you? you don’t have to bend until you break. you just have to get up. look in the mirror, at yourself. Do you like you? I like You.

Here’s the entire song:

Put your make-up on
Get your nails done
Curl your hair
Run the extra mile
Keep it slim so they like you, do they like you?

Get your sexy on
Don’t be shy, girl
Take it off
This is what you want, to belong, so they like you
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

Get your shopping on, at the mall, max your credit cards
You don’t have to choose, buy it all, so they like you
Do they like you?

Wait a second,
Why, should you care, what they think of you
When you’re all alone, by yourself, do you like you?
Do you like you?

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try so hard
You don’t have to bend until you break
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Mm, mm

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

You don’t have to try, try, try, try
You don’t have to try, try, try, try
You don’t have to try
You don’t have to try

Take your make-up off
Let your hair down
Take a breath
Look into the mirror, at yourself
Don’t you like you?
‘Cause I like you

Accept or Fight

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When another doctor tells you that what you want is not possible and you need to accept that and set more realistic goals for yourself, do you do it or do you keep fighting for what you want?

I have seen a team of neurologists and neuropsychologists now.  They are all singing a similar tune. That I am different. That I have to accept that I cannot return to the previous version of me that I recall before the brain injuries. (I’m not sure if I have discussed the extent of my brain injuries here, I haven’t wanted to talk much about it and writing was so difficult before. But I have some serious cognitive dysfunction, memory gaps, processing delays, visual lags and disturbances, sensory overload….it goes on.) That skills like creativity, and certain personality changes, once altered, do not heal and come back, at least not identical to what they once were. I may be able to enhance what I have, but I will never be who I used to be.

I may never be able to do what I used to do.

Every time I think of this as a fleeting thought, the tears return.

Another esteemed doctor told me this again yesterday. They are well educated, at a great hospital, known for their expertise, and my gut trusts them. However, there is also something in me that is screaming they are wrong. Doctors once told me I may never walk again, that my weakened leg would never regain muscle tone. Well look who is out there attempting to jog. So I don’t accept “never” as a final diagnosis. I feel like I’m still in here, just slowed down.

He recommended I either apply for disability or try to work with a vocational counselor, but he doesn’t think I can keep up with the pace and demands of a job. That was harsh, but possibly true. I may be overestimating my stamina at this point because I want to be better.

He said that I am still traumatized, understandably, and that for me, the trauma never stopped. 40 years of trauma. He said that would be enough to break anyone. But add all my medical issues and it was like adding gasoline to a fire. And then on top of that, a stressful marital relationship, he says it was a cascade of events and none of them were good for brain health.

We talked about my social support network, and I said I’m all alone, completely. I have a few online friends and my counselor. We talked about how I isolate myself and why. I told him about how I have low tolerance for people, no matter how much I try, I can’t enjoy being with them, or think they aren’t good people when they make fun of others, are greedy, I catch them lying or cheating, etc. I said I try to turn down my moral standards but I can’t. He said something I never heard before. He said of course you can’t. You have never felt safe in your life. As soon as someone says or does something that makes them have any possibility of being a bad person, you go into self protection mode and either stop talking, leave the room, or hide or whichever other skills you have learned to avoid conflict and being noticed. This is to keep yourself safe. It makes perfect sense and is your core belief stronger than all others. Safety comes first.

My jaw dropped, and I felt angry a bit, kind of embarrassed, and I wanted to say he was wrong, to fight that, but as it sunk in, and so many social interactions spanning 40 years flashed across my mind. Holy crap. He is right.

Here I was thinking I was over my trauma and it didn’t matter any more. That I was an introvert and yeah maybe I was wired differently, or maybe on the aspberger spectrum, or maybe just get annoyed with small talk and petty people. But no. Every social decision ever has come down to safety.

He said the right trauma based psychologist may be able to assist me with that component and he would help me to locate one near me to work with. He said I can’t live the rest of my life alone, or I will continue to deterioriate.

I don’t know. I feel like I’ve tried. I feel like the people that accepted me never accepted the real me and when I do reveal the real me people run for the hills, unable to handle me. So maybe someone can help me find this tightrope skill of balance of how to build a relationship that I feel safe in, connected to the other person in a real way, without overwhelming the other person with my intensity.

I think figuring that out will help me in any job I may come to have in the future, whether I go through the disabled workers board or get one on my own.

I do know that I want to be a part of the world and connected to people, to good genuine people, and I just don’t know how.

I do know I’m not ready to give up and get on disability and never work again. I think I still have something to offer. I’m still smart in some ways, just really slow, and get tired out quickly. I’m hopeful the new migraine meds will start helping with some of that too. I’m hopeful that my family is done adding trauma to my life and I can finally move ahead on my own. My parents are gone, my brothers aren’t speaking to me. The hole hurts, but an empty hole is a dull ache, not like the tortuous pain of constant flaming daggers tossed at you.

Sometimes I don’t hate myself

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Here and there I experience moments of peace, freedom from self loathing. I am trying to make more of these moments appear in my life, if I can.

These moments come either when I am alone, or with my kids. Never with anyone else. Okay. Good starting point. It doesn’t always happen though. So what else is going on?

These moments come when I am not trying to change myself. When I am living. Doing something, like playing a video game and laughing with the kids, taking a hike and snapping photos, watching clouds transform into shapes and colors, feeling the hot water of a shower on my back, blowing bubbles and watch them float or splat, petting the soft fur of my dog, lifting weights feeling my muscles strain. I have brief mindful moments when I take in the world and I do not think about it. No analysis. No paranoia. No decisions, judging, evaluating, scanning for danger, making sure I am saying the right things. Just live and breathe, watch and experience.

These moments come when I am not trying to be perfect. I often am being childish. I make a rude or inappropriate joke or comment. I eat too much candy. I do the dishes later. I forget about something on my to do list. I make a mistake. AND my brain does not attack me and say I am a horrible person and need to die.

This is new.

These moments come with acceptance. I have accepted my current state of being – my weaknesses, my tendency to forget, my difficulty learning and processing, my auditory troubles, my daily flashbacks and slips into dissociative states, my irrational fears and panic attacks, my obsessive unbalanced thoughts. I have accepted that this is me right now. My kids accept ME too. They call me demented – but with a hug and a smile. They love my quirks. Maybe I can too??

I have made some BIG decisions to change my life. I am no longer going to desperately try to change ME. Instead I am going to accept me and accommodate me. I am no longer putting on a fake smile. The people closest to me don’t like ME. They like submissive, complacent me. And ya know what? I hate her. But I don’t hate ME.

This is really important I think. I have built a life, surrounded myself with people that never accepted ME. I have decided I am no longer obligated to be a part of their lives.

The in-house separation with Hubby is going really well. The space and distance is exactly what I needed to start healing and feeling stronger. I am no longer triggered and traumatized daily. I am getting some rest and peace here. With our separation, I have told him that I will not be going to any get-togethers at the in-laws’ houses for the holidays. He can take the kids without me as if we were truly separated.

I cannot tell you the overwhelming relief this decision has given me. Freedom from the chaos. Instead of my stress getting worse each day, I am getting more relaxed as the holidays approach.

I have accepted that I hate parties. I am going to stop forcing myself to attend them. I don’t need a label as to why. If you want to call it social anxiety, PTSD issues, attachment disorder, paranoia, whatever it doesn’t matter. I suffer when around people. Especially Hubby and the inlaws. I suffer for days before and after social events. I hate talking to people. I hate listening to people. I hate trying to fit in – because I don’t. I hate pretending to like things, pretending to agree with them. I also hate conflict and disagreeing so that doesn’t work well either. I hate analyzing motives, interpreting body language, making sure I am not being rude, making sure I am safe. It is exhausting. Not one second is ever fun.

I used to drink to get through social events. A few shots of whiskey before we leave. A few more while we are there and wine with dinner. Maybe add a benadryl or a sleeping pill to take the edge off.

I don’t do that anymore.

I won’t hurt myself any more. I won’t keep going to therapy to try to change the fact that I am not a social person. I have one more session to wrap up my program and then I am done with therapy. This is ME. I prefer being alone. I do not get lonely when I am alone. I am only lonely when I go to parties and see how different I am. I start feeling bad, like a freak, watching everyone else enjoy themselves, laughing and chatting. Why can’t I do that?

I don’t know why. But I don’t care anymore. It is no longer a goal of mine. I have accepted that I have different social requirements and I am going to stop trying to change and force myself to fit into a convenient mold that everyone else wants for me but I have never actually wanted.

This decision may hurt some people. They may think I am being selfish. I say good. About damn time I figured out how to do that. If the people actually NEEDED me, I would be there in a second to help. No one will die or even suffer because I am not eating turkey at their dinner table. Perspective is needed.

What about my kids? Won’t they be confused? No. They accept me too. I have explained to them this past year a bit about my troubles. That parties make me nervous and sick, cause headaches, too much stress, no fun for me. I am here for them all the other times. They can go to a party and come home and tell me about it. Instead of us going together, and me hiding, recovering, sick for the next several days. I am a better mom this way. By being kind to myself, accepting what works for me, and stop chasing normal.

I hate normal. But sometimes I don’t hate ME. And that is the key to everything. That is how I am going to get through this. I just know it now. I keep picturing a future where I might not hate ME. Is it possible?

Love and Obligation and Duty

Why did the Hero flush the toilet? …. Because it was his duty.

Sorry.

Blame my kids and Wreck it Ralph for that one. I can’t even think the word duty without an inappropriate smile any more. I was already immature. You would think having kids would help that. Nope. Made it worse.

I have been thinking seriously though about why I do what I do. Examining some tough thoughts, like what is love, is love real? Or is it only obligation? Do I need love?

So I think we lump many things under the love umbrella that are human needs.

I think love is actually acceptance, validation and respect. I don’t think it means feeling happy, feelings come and go. Except maybe peace. Does peace go with love? (probably more to it than this – but that’s what I am talking about today)

I think we do need acceptance – in some form. We need validation. We need acknowledgement of our existence and our journey. I struggle to give and receive that in real life, but the internet has provided many platforms that makes it possible. Love is not exactly involved with this. I care about the people I interact with but I am not sure love is the right word.

How do you know you love someone? And is it a different type of love defined by the different types of obligations?

This is probably confusing and not making much sense. I will try to give some examples. I loved my parents. I thought this was a love without end, a love that should exist, that had great meaning and defined me and them, bound us in loving obligation to each other. But –  they always had the right to withdraw love and I did not. I had to earn it. I constantly tried to prove myself worthy. I did not have acceptance or validation. And I know now, that love I was seeking, never existed at all, a fabricated universe concocted to control me. Love should not include control. Parents guide, not control.

Okay…

So what about Hubby? Is this love? This dance of power, control, seduction, confusion, manipulation, irritation, fear, dissocation, isolation, secrecy, and lies? There has not been acceptance and validation here either – on either side.

Love also means respect.

And that has been missing here too.

I am not saying we don’t care about each other, help each other, try to do things right. We have a deep sense of obligation, honor, and duty. We are good people and care about and help many people. But it isn’t enough for a marriage. It isn’t right.

When I think about my kids, it is entirely different. I think that is love. I feel acceptance, validation, respect – in both directions. I hope that is what they feel. We listen and support each other. We encourage each other. We accept our faults and oddities and work our days around them – we are accommodating. I don’t feel like a frustrating freak with them. I feel like me.

I guess that is why this blog is so important to me. Yes I want to get my story  out there, talk things through, reach those who are silent. But I think this is me. This is my voice and I want it out there. I want it to exist.

Because generally I don’t ummm exist. I plod along in a vacuum, or alternate reality. Even when I am present, not dissociated, I often don’t feel fully here. A spacey surreal feeling that keeps me cut off from everyone, unable to feel love even if offered. And so I examine thoughts like this. Am I loved? Do I love? Is it a real thing anyway? Do I need it? Will I always feel like this? Do my kids feel loved? Is this my attachment disorder talking? Do others feel like this? Should I give up trying to fix this and accept this is how I am?

I am reaching acceptance of myself, that I am different. That I may slowly change, but that I don’t want to count on this change to happen. I would rather accept myself the way I am, and surround myself with people that accept me the way I am – or be alone.

The acceptance I receive online and from my children feels like enough. I don’t feel lonely, even though by most people’s standards, I suppose I am alone. I feel better alone, with emotional distance from the people in my life that do not accept me.

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I took a three hour walk (yes 3 hours!! I can walk for 3 hours now! My back and leg are getting so strong!) in the forest last week, taking photos of the fall colors. I was alone on this walk, but I felt fuller and more alive than I have in weeks. Everything in the forest was so alive, I could feel the energy, hear the wind in the tree branches, hear the birds, the squirrels scurrying. I saw fungus and vines thriving on decay. I saw dead trees full of woodpecker holes. I saw and felt the life, the survival, of the creatures there.

Why do I feel more loved, safer, content – at peace – alone in a forest? Should I keep fighting this feeling or just go with it? Accept this, do what feels right, enjoy my peace without guilt, stop trying to make friends that I don’t want, stop trying to feel love I don’t feel. Just stop. And just be.

 

 

I am Grief

It is starting to feel like I am grief, not like I am grieving, not like it is a process, or an emotion that moves through me, but a state of being that is me and completely has consumed me from so many directions.

When I allow myself to feel the sadness, I can’t see to type through the tears, so I need to hold it back to that familiar dull choking feeling that is now my life. That no one wants to see or acknowledge. Yes I am still sad today. Yes it sucks. Yes I need more time. I don’t want to apologize for how I am any more. I don’t want to explain it any more. I want it to be understood. But this is my life – I don’t get what I want.

I do feel moments of happiness with my kids, I do, but it is heavy, weighed down by this sadness, like I have an upper limit, or this shadow turning everything good a bit blurry.

I miss my mom. So much. So many things I want to show her, share with her, apologize for, explain to her. I see her everywhere, the songs she liked, the candy she liked, flowers she liked. I have paintings I started for her

I am also hurting as I realize I have not been treated very well here. I realized I did not receive one sympathy card, no flowers, no casseroles. Not even from my in-laws. Nada nothing. I did get one phone call from an aunt, the wife of my mom’s brother checked on me. That’s it. No one else reached out to me at all. Same for when AF died the year before. I know that was complicated, but everyone pretended it didn’t happen. I have lost both of my parents in the space of a year and a half, both were not even 70.

Then AF declared for the world to see that he never loved me, in his Will.

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That broke me. I crumbled. Whatever was holding me together for so many years was shattered then. I lost myself. I became suicidal. I lost my job. I was hospitalized. Then as I was recovering my mom got cancer and didn’t tell me. I had pushed her away while I was healing. I didn’t speak to her during her last year on earth because AF broke me. He stole her from me again. Just like as a child, he kept her from me, creating fear by telling me she hated me and never wanted me.

Hubby is still not understanding. He is not gentle or comforting for me. His volatile moods and rough responses are too much for me to handle right now so I generally avoid him. When I do specifically ask him to do something for me and I think he understands, he does not follow through, leaving me hurt and confused, feeling betrayed all over again. I say please don’t tell ___ to your mom, it will get around to your sisters and come back to torment me and I don’t want to deal with all of that. He agrees. Then an hour later I hear him, he is telling his mom ___ on the phone. (Next day his sisters text me about it…I hate drama, wanted to avoid it, none of their business, didn’t matter, leave me alone, I give vague responses until it settles down) I ask him later why he did that? He yells at me. It is my fault again. How was he supposed to know. Sigh. Do I give up or do I try again?

I don’t understand. I have such little trust as it is, these events don’t help. I am spiraled into emotional flashbacks because he can’t do what he tells me he will do. Did he not agree with me in the first place? Am I not important enough to grant or remember this request? Was he lying to shut me up, make me happy, with no intention of not telling? The doubts flood my brain as I try to make sense of what happened. And he says, Sorry (but he says it so rough like a bark, not sincere), whatever, What’s the big deal.

Then we are trying to plan a party for his parents. It keeps getting more and more complicated, with his one sister coming in from out of state, the one married to the guy I accused of being a creep a few years ago. That plus they are adding more events to the day, a family photo, lunch, dinner, coffee and dessert, all in different locations. I told hubby that I was concerned I may not be able to do all of that. Then he said to his sister on the phone that I may be too tired, not have enough energy to do all of that. My heart sunk. Is he ashamed of me? He can avoid this topic but not the one I asked him to? So I texted his sister after he hung up “Hey I’m not sure he explained it very well, I want to do everything you have planned and it sounds like a great day for everyone and your parents, but I am still struggling with social anxiety and other symptoms of ptsd that may make it difficult for me to do so many events all in one day. I don’t want to let you all down, I will do my best to manage but wanted you to be aware.” She texted back “ok”

So I am trying to be real with the only people in my life. I keep hoping they will one day be more accepting, accommodating, instead of only me being forced to hide my symptoms and smile pretty for them so they aren’t uncomfortable. I have no idea how I married into such an unsupportive group, I suppose some part of me knew this, guaranteeing my isolation and continuation of what was familiar. They aren’t pedophiles and psychopaths, but dysfunction runs rampant.

Maybe a supportive functional family is a myth.

I am trying to manage this grief that keeps trying to swallow me whole. But I noticed I have forgotten how to smile. It is no longer natural. I started practicing in a mirror and those muscles feel so heavy and I can only produce an odd crooked grin.

I am turning 40 very soon. I have no plans. No party. No friends. No extended family, just my kids.They are the only humans I feel safe with, can feel happy with. I hate how much I need them. My daughter is my best friend, we talk about everything. I already fear the day when they grow a bit older and I lose them. Then I will truly be alone on this planet. Until then I will try to cherish the moments and try to make this creepy grin into a real smile and try not to think about how unimportant I am to everyone else.

Hemiplegic Migraine Triggers – Figuring me out

Starting to figure out some of the sources of my migraine misery with direct cause and effect.

Tannins!

Wow this took a while to figure out. I’ve been on a strict trigger free diet eating only whole foods, nothing processed, no alcohol, nothing aged or fermented like cheese or yogurt, nothing smoked or processed like deli meat, no bread at all for no yeast or malt or sourdough or other processed items.

I’ve had some better days and some not, and I wasn’t sure why not.

First, I’m fairly certain the anticonvulsants are doing nothing to prevent the migraine attacks, I think all the improvements are due to my diet changes, hmmm.

I’ve noticed some specific symptoms for years like I can’t drink red beer like Killians without an instant killer headache. I never called that a migraine, because just head pain and no weird neurological stuff. I stopped drinking that beer and no problem. I have a similar but much milder headache from green tea. These headaches are instant and felt after just a few sips right in my forehead.

The biggie seems to be bread and I thought it was yeast, but now I’m thinking its the malted barley. I’m getting a predictable reaction to this now as well, and its not a headache. Its a hemiplegic migraine. I’ve had no bread, no pizza, no crackers, nothing. Now that I stopped eating all of that, I can clearly see my reaction to it, and it isn’t pretty.

I tried again yesterday. I made waffles for the kids, and added chocolate chips and blueberries. (guess what chocolate and berries also have tannins, I know this now..) Oh they looked and smelled so good and I haven’t had anything like that in sooo long so I joined them for breakfast. I knew it might make me sick or blur my vision or something but I had nothing planned, didn’t need to drive, and wanted to experiment on myself. Sigh. Not fun being a human guinea pig like this but I need some answers before I see my neurologist again in a few weeks.

Link to Foods that Contain Tannins

These phenols are also in aromatics like perfumes, which just ties it all up in a nice big bow for me. Aha! it all makes sense. So if I eat it, wear it, or even smell it, these phenols are hurting me. The weird thing is – they are antioxidants and should be good for me. But we all know how much good it does to say SHOULD. I can’t explain it yet, I can only say this is my story, and the pieces are starting to fit together at least. I hate random. This isn’t great, but at least it doesn’t feel random and I feel like I can control it somewhat, or at least try to manage it.

Anyways, it hit me hard. it was not instant. It was a few hours later. See below to see the sequence of fun events I have from eating this waffle. Its unbelievable. I’m starting to put this together. The biggest culprit seems to be the malted barley. I’ve been thinking of the ‘allergies’ and ‘sensitivities’ I’ve had my entire life and wondering how much is related to tannins and polyphenols, it is making sense chemically now. Problem is, America puts this stuff in everything processed, and its also in many healthy foods too like nuts, beans and berries.

I just need to stop eating. Problem solved. I had the right idea with my anorexia in high school, maybe I was actually trying to feel better and not self harm….wouldn’t that be something.

First I feel my face go numb and droopy on the right side, like my cheek is too heavy. It is hard to talk because it is hard to move my mouth, but also because it is hard to think and find words. It is hard to understand words. I hear my kids talking but it sounds funny. I laugh. I know I’m confused but it isn’t scary, it amuses me in this state. So strange to explain this because it makes no sense as I type it, but I’m describing what happens when half my brain shuts down, so I guess it doesn’t have to make sense. Next is the arm and leg and right side weakness and pain. This type of nerve pain is searing and deep. My muscles twitch and spasm. I’m unable to grasp a pen in my hand and bear weight on my leg. I stumble and lose my balance. Everything spins. I get nausea, diarrhea or vomiting. I either can’t urinate or urinate too frequently with a weird cloudiness. My vision is distorted in some way, always different what it looks like, sometimes like Picasso, sometimes double vision, sometimes like alice in wonderland. I don’t panic any more, I just enjoy the show. No not really, but I know I can’t fight it and sometimes I do have a sense of awe at what I am seeing. I take magnesium and motrin and rest with ice on my head, neck, back, arm to help with pain. And then all I can do is wait for it to go away. If I’m lucky and it hits quickly I will fall asleep, nearly black out when it first hits. The head pain comes later, like a brick, and can last for days, along with the pain in my limbs. I have to massage and keep moving to get the bad stuff out, its worse if I lay in bed or try to hold my twitches still. So I drag my limping, wobbly butt over to my cane and the wall and pace about the house for as long as I can tolerate. I try to do it for 10 minutes at a time all day long.

Air Pressure

My other huge trigger is changes in barometric pressure. This will give me the instant -I must pass out and sleep- type of trigger its so intense sometimes. I have an app on my phone that tracks air pressure on a graph and alerts me to changes and I’m analyzing the history against my symptoms in my journal. I noticed the other day I was triggered at the drs office at the hospital. I thought it was a stress trigger until I checked my pressure app and saw how high the pressure was during my dr visit, and then it went back down so quickly. I thought that was odd and started investigating what happened. Turns out buildings have positive air pressure inside! A LOT of air pressure for large commercial buildings like hospitals that are sealed tight. I never knew. I started checking my app for other buildings, sure enough the pressure is raised a bit – instantly – every time you enter a sealed building. But this hospital was a difference of like hurricane level, no wonder it got to me. The app I use is called “Pressure Tracker” if you want to find it for android and see for yourself. I had to calibrate and tweak it, but I needed something to apply my geekiness to since I’m not working. The air pressure trigger also brings on a similar hemiplegic migraine as described above, but tends to be more intense and cycle more quickly, more painful, but passes in hours instead of days.

That’s my life now. Try not to get triggered, and spend all my time recovering from being triggered. Nothing is really controlled yet but I am starting to learn and uncover what is happening. I’ve made the diet and lifestyle changes. I’ve accepted my new life. I’m going to ask the Dr about my future and possibly going on disability payments at my next visit. I don’t have much hope at this point of recovering.

I have no idea why I am more sensitive now than I was previously in my life, why the migraines I’ve always had and managed turned into debilitating hemiplegic crises. The Drs don’t know either. All they do is offer me other pills to try. If I didn’t try this elimination diet I don’t think I would have been able to walk at all at this point, just getting sicker each day. But its like some switch flicked on and I can no longer tolerate a few triggers at all, sends my brain off instantly.

I’m Fine, You dont have to help me

I have given up. on him, not me.

After over 20 years together, I find it unbelievable and inexcusable that Hubby is still so clueless about me. I have never felt more misunderstood

I need to stop giving him the power to emotionally torture me. I don’t think he does it intentionally. I don’t think he is cruel. I actually think he has been trying to help and understand but he is so far wrong each and every time even though I spend literally hours explaining with examples until I am exhausted.

He has no empathy. He just can’t see something from someone else’s point of view.

He’s never had depression, or panic or phobias. he doesn’t get it, how hard this, how hard I’m trying to recover from the suicide attempts in April. That life is really fragile for me right now, and nothing is easy that may seem easy to him.

I asked for his help, no I begged him. I said I am stuck inside my head. I am stuck inside this house. I haven’t walked my dogs in nearly a year. I haven’t had fun in …. years. Its been so long that I’ve been declining I really don’t know when I lost the ability to feel joy. I asked him to try to encourage and include me in outings instead of assuming I don’t want to go. I tried explaining that although I do avoid everything, I actually long to be included and feel like I belong and like I matter to people.

I have this binder from my group that I keep asking him to go through with me, so he can learn what I learned, for himself, and to help me, to help us. I keep waiting for the ‘right time’ to do this activity. He’s always tired from work, or resting its a weekend, or playing with the kids, or doing all the household chores and tasks that I havent been doing. I get it, he’s a busy guy trying to fill in for me. And I’m asking for more. I’m asking for emotional support as I learn to rewire my brain, do the hard dbt steps, rejoin the living. I’m asking him not to yell at me when I tell him I’m scared or worried or upset.

I’m asking him to be the strong one. And I’ve never asked this before. I’ve never admitted my weakness before. I’ve never said I am scared when you touch me. I’ve never said I cry all alone. I’ve never said I stand there paralyzed with fear. I’ve never said how many times a day I wish for death to find me.

I know this is hard. This really f*cking hard. But I can’t mess around anymore. I need to do this NOW. I can’t wait for you to help me. I can’t wait for you to see and understand me, and figure out how to help. Maybe one day you’ll be that person, but for now you aren’t.

So my emotional safety will not be placed in your hands. When you ask how I am, my answer will be “Fine” back to how you’re used to it being for the past 20 years. I will self soothe and go to others for support. My emotions are not for you.

I waited for the right time to be convenient for you to help me.

You chose to help your friend, who lives an hour away, to fix his lawn mower, instead of working with me.

Your abrupt change in plans devastated me and left me at home crying, feeling like a failure, and as important as a piece of sh*t. And then I got angry. I’m usually afraid to confront you with thoughts like those, but I did. I texted that to you, and didn’t hear acknowledgement until nearly 12 hours later, right before bedtime when its too late to talk about it. Thank you for the “I’m Sorry”. But you need to know what a dreadful day I had waiting for it. This type of distress sends me to the ghost land, where I disassociate and can barely stay present no matter what I do. The fury boils underneath my skin but I can barely move it makes me sick. Especially when you try to sit next to me, I say yes, waiting for you to say something, but can only take for so long before I have to run out of the room. I’m afraid of you, I resent you, and I need you all at once. This is too confusing and familiar for my brain thats trying to get healthy.

You’re not a bad man, but you’re not always a good one. Not for me. I swear my hair could be on fire and you would have no idea what was bothering me. So good news, you’re officially off the hook. Stop trying. Leave me alone. I’m Fine. I’ll ask someone else to help me.

Maybe your bad behavior is a blessing, the final push I need to reach out of my isolation….

Accepting limitations

Having trouble turning thoughts into actions. More of my thoughts are good ones, on the positive side, like something healthy useful or productive, but the thoughts seem to remain thoughts most of the time and I’m not sure why. I  don’t feel like I am consciously choosing or not choosing to do something, and yet I sit here most of the day, day after day.

I quit my job 6 months ago now. It feels like yesterday. How have I watched TV for 6 months. I’ve barely even blogged, just a few posts and comments here and there. Like my brain checked out. I don’t even remember the TV, its just on so I don’t sit and stare at nothing, which I actually don’t mind because my mind is so busy inside.

Its like I’m in a worm hole and traveling in time at a different rate than the rest of the world. Everyone speaks and walks too quickly. I can’t keep up. Thank God my kids are so smart because I don’t understand their assignments. I help supervise and make sure they work on it, but I can’t follow the directions, its too complicated and I can’t remember step 1 by the time we got to step 2. I put due dates on the calendar and remind them, that’s all I can do with my new brain.

I’ve accepted that this may be permanent. I cried. I screamed. I kicked things. I’m calm now. Sometimes I still let a little tear escape when I try to do something simple and the confusion makes me equal to my second grader. Because I remember teaching calculus and geometry. I remember being brilliant. But I’m not right now. I’m slow and dull.

Part of this odd confusion and slowness seems to rob motivation or whatever the mechanism is for making the body actually get up. I live in my head and its frighteningly difficult to get out. I barely notice my surroundings or my body. I don’t feel sad. I don’t feel numb. I feel calm and content, so its hard to call this depression. I think its more a function of the confusion from the migraines at this point, and the isolation habits from the depression.

I’ve been alone so long. I am taking steps to fix that though. I completed the intensive DBT group therapy and now they are recommending a 12 week cognitive processing group therapy for me. That should start in a few weeks. I am still on the waiting list for an individual trauma based therapist so I can do this group while I wait.

I have some concerns though. I am concerned to start something so intense around the holidays that always are so difficult to handle anyways. I’m barely talking to Hubby or anyone, I feel exiled from all family except my SIL. She’s been an angel. Hubby and I have terrible habits of communication that we react badly to one another, and whenever I tell him I am scared, he escalates and raises his voice and makes me feel worse. We keep talking but have found no solutions to this yet, other than he isn’t a safe person for me most of the time when c-ptsd is all stirred up. Which is exactly what this group will do. Its going to dig deep and stir it all up. The counselor said its going to be terrible and midway through everyone nearly breaks down as they explore hidden emotions and try to get in touch with the trauma and process it. Eek.

I’m not sure I can do that on my own, with no one here to comfort me when I get scared. But if I don’t do this now, I have to wait 12 weeks to join the next group, and what, is my life on hold until then? I think now is the time, while I’m not working, to do this once and for all. I just need to trust myself that I can handle this, and that I will listen to me, and not AF’s voice, and not the suicidal thoughts that are bound to flood in when the shit hits the fan.

I joined a NAMI support group, I actually go there in person twice a month. I do have them. I do have my SIL.I also joined a different online forum and I have some new friends there I chat with, so I have them too. And of course I have my wordpress friends. So maybe I can do, and maybe this is the next step to getting AF’s voice OUT of my head.

But I’m afraid. I am so afraid to turn around and face it and hear it full volume, its been muted for so long. I get dizzy, nauseous, and sometimes black out during these exercises it is so powerful and frightening. This counselor says I have a bit of hell trapped in my brain and it blocking me from enjoying my life. That I can’t feel things like love and happiness until I get this block out. I blocked it to stop feeling the pain and fear, she said. I still don’t know if I believe her, but I am willing to try this if it has any chance of removing or even reducing the amount of suicidal thoughts I have daily. Its so hard to build a meaningful life when your brain just keeps saying you should be dead.

I asked them all about going on antidepressants and I talked to doctors, psychiatrists and my neurologists and we all agreed that they arent good for my brain. The only times I ever actually attempted suicide were when I was on antidepressants. No I think the root of the suicidal thinking is not chemical, its AF’s voice constantly feeding me negativity and filth and hatred. When I can practice more compassionate self-talk it really makes a difference.

  • You can make healthy choices for yourself
  • You are strong
  • You can make it through this
  • You are having a normal reaction to an abnormal situation (you are not a freak)

PTSD – I do matter

past present future
all the same

lines blurred or no lines at all

superimposed

or worse

reality replaced

————————————–

(triggering)

I’m not psychotic or delusional but it feels that way at times as I’m a prisoner of my brain’s emotional and memory system and nervous system. I feel attacked in my own body. I feel like everyday places are dangerous to me because I feel like a vulnerable 3 year old child. No one held my hand then when the world was scary, no one encouraged or soothed me, no one taught me how to make friends or talk to people. Instead I was beaten down for trying, humiliated, shamed, emotionally tortured as I was isolated from mom, brothers, friends, only allowed to love AF. My brothers and pets were punished for my wrongdoings, causing me to strive for perfection and to further isolate me. AF’s plans were cruel and calculated each step of the way, much further than a little girl could ever know. I was always confused and trying harder to make him happy. The sexual abuse started the same way. At first it was warm and comforting to be held by him. And then his touch was confusing, but I wanted to make him happy. And it escalated over the period of years. I belonged to him – he didn’t have to rush. By the time it was clearly sexual and no  longer affection, I had no idea any boundary had been crossed. I had no boundaries. I wasn’t allowed to have boundaries. I wasn’t allowed to think or feel things – every thought or feeling was for AF and how to make him happy and protect my pets and get perfect grades and have a perfect body. I was already dieting and exercising per his plans in 4th grade and yet he daily called me fat, and daily bought me candy. And always laughed at me.

Some days I’m doing better to get his harsh words out of my head and replace it with compassionate self talk. But I still hear the laughter, his evil, gut wrenching laughter that makes me want to kill myself all over again.

Then I do some grounding exercises, deep breathing, remind myself he is gone, I’m a grown up, and I can keep going and keep making healthier choices for myself even though it is hard and scary and every time I try I hear him laughing at me.

Maybe one day I won’t. And that is why I keep trying. No matter how many days and how many times I crumple to the floor in fear and tears from the memory of what he did to me, I will eventually get back up, try again, because maybe, just maybe, tomorrow will be the day that I WON’T hear him laugh at me. And I’ll never know that if I give up today.

And he can’t win this. he just can’t.

I do matter.