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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

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What am I Worth..to an Employer?

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Finding a job is pretty darn high up there on the life stressors chart for anyone. So many decisions, so much time, effort. Penetrating questions. Potential adjustments. Fears. Hopes. Disappointments. The waiting. The unknown. What am I worth?

My heart rate is up just typing that.

So think about my situation for a moment. I had a certain skill set, loads of high tech and higher math knowledge, computer software, great vocabulary, fast typing, persuasive speaking and writing, super confident.

And now…I look at my resume and it feels like someone else. I have so many holes in my memory, no one would believe I used to code webpages or teach calculus or write poetry. My typing has gone from about 80 wpm to 35 wpm with so many errors, the screen is all red underlines. Words that used to flow freely get stuck and I sit and stare, waiting for a thought to form. I am relearning math, but I doubt I will have time to get back to a calculus level in my lifetime as I’m relearning basic facts. Here and there I remember things, like how a tangent works, or what an exponent does, but then I start to work it out and it goes blank again. My daughter is in  high school algebra right now, I had been looking forward to coaching her, and it all looks so familiar, but I have no idea how to solve any of it. I tell her, you have to do something with regrouping….and I get excited thinking I might recall, but no, I can’t get any further.

So. How do you get back to work, when you can’t do what you used to do? How do you explain that you can’t do what you used to do and not sound incompetent or insane?

This process has not been going well. I’ve been applying for low level part time jobs that have nothing to do with my work history. I either don’t get called at all, or when they talk to me, they say I am overqualified, they are afraid I will get bored, or just give me that certain doubtful look, or have that tone in their voice and I know it is over.

My doctor recommended I contact my state workers with disabilities board. I guess I knew there was one, because they helped my brother, but I never considered myself disabled…just never thought of it. So after the shock wore off, I looked online, and saw they had exactly the services I need. I applied online, they called me the next day, set up an intake appointment that same week. Wow!

So I met with them last week. I was so incredibly nervous. I had to gather up my medical records to prove my eligibility, that is phase one. I worked through shame, fear, felt like I was whining, complaining, oh poor me-ing. Until I got there. It was literally a life changing day.

I’m sitting in the waiting room and my assigned case worker calls my name – she is completely blind. She has a service dog leading her, and me, to a small conference room. We sit down, and I’m instantly much more fascinated by her than I care about me anymore. She is confident and professional. She has a stack of folders labeled with braille, and braille typewriter thingy I’ve never seen before to take notes as I talk. She hands me papers that she can’t see but describes them to me in detail. It blows my mind as she helps me to fill them out.

She asks about the forms and records I brought, and asked if I would give her a summary, since she could not scan through them. As I start describing my lengthy and complicated neurological issues, I could sense compassion in her, as I have for her. Mutual respect was huge in this room – like we were both thinking “Damn, I don’t want to be her…” I could tell she wanted to see me when I talked about my scoliosis, because you might think I am visibly deformed, but luckily my curves are balanced and my surgeons are talented so no one would ever know by simply looking at me. You can see my limp when I walk though. So I’m thinking she was not always blind, the way she looked directly towards things and me.

We had a few of these surreal shared moments. I liked her very much. She explained the program and seemed excited to have me there, that she can actually help me. She said so many come through and disappear, don’t show up again, aren’t willing to work hard, don’t answer phone calls. She said she can tell that I work hard from my past jobs, and that I keep my doctor appointments in the city. I never thought of that as a major accomplishment…but I see her point. That takes planning and commitment, shows responsibility to drive 2 hours away for my neurologists and surgeons.

So, the next step is I wait for them to confirm my medical eligibility, then they will set up vocational skill assessment. I’m guessing typing, reading, math, but I’m not sure what all is involved there. Then they use that to see if I nee training, find some job leads, help me re-write a resume, practice mock interviews so I don’t stumble with those tough questions. They can advocate for me, or work entirely behind the scenes, meaning my employer can know I’m using disabled services or not, we will decide which way is best in the career plan we develop. They will stay with me once I’m hired, make sure the transition is smooth. Then I get to use them again, say if I want progress in my career or my health improves, I’m not stuck. They want me to be challenged and working meaningfully. Wow.

So my nerves are gone and I’m only excited now. Someone on my side to help me navigate these tricky steps to getting back on my feet. I am so grateful.

Internal Conflicts

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I am not at peace. Nothing in me is at peace. I sense the battle, I feel like I am fighting, and its because I am. Even within myself, my own systems, my own body parts are at odds, creating pain and conflict.

I could give so many examples, literal and more abstract. The point I’m trying to make is a concrete one today though, as I discover yet another physical issue, a malfunction, a deformity of my bones. I can poke fun a bit today, because yesterday I cried. I’m done crying so I am dealing with this the only way I know how.

So my big toe has been hurting. Not a major concern to me, it has hurt most of my life, but much more so recently. It aches after I walk. I assumed it was due to a few factors: a horse stepped on it when I was about 7 and I received no medical care, it is on my weaker leg with drop foot, I stomp and stub and don’t walk properly on that foot for most of my life. I figured it was hurting more now perhaps because I am walking better? Using my toe more? hmm. Or do I have more feeling in that foot now since the recent back surgery? Was it always hurting this much? Not sure.

What I do know is that it never used to look like a zombie toe. Yep. Now after I walk, especially on uneven ground like gravel or hills, my toes fills with blood, like internal bruises. Black plague? Despite appearances I don’t think so…so I went for an xray and my doctor says nothing is broken, maybe I sprained it, and I should get new shoes. Umm okay.

6 weeks and a new pair of shoes later, I still have zombie toe. I saw a podiatrist yesterday. After more xrays, he is confused, and comes in the room with my favorite phrase. Wait for it, you know what’s coming, right?

“I’ve never seen this before”

Sigh

Okay what special lottery did I win this time? Apparently my toe joint did not grow correctly.  It has been this way for most of my life. Oh! The joint is too small, missing the cup, bulbous portion to support and lock, to provide balance. It is up too high and needs to travel too far to reach the ground, my foot needs to twist and flex to support me. My toe is hyperflexing at that joint, busting blood vessels. Not a birth defect but a growth defect, possibly related to scoliosis, or possibly that horse injured the growth plate, but it doesn’t look like it was ever injured or broken, just never grew properly. Apparently, limping on it for 28 years has concealed this issue, actually done me a favor but now that I’m putting all of my weight and attempting to correct my gait to use a proper heel toe roll step instead of the drag slap I was using, it is stressing my malformed toe.

Seriously

So I still can’t walk correctly or get up to jogging without breaking my toe off. Okay. Sure.

What the FUCK?? OKay, I am trying to keep my cool, but why does the universe not want me to walk or run?? Why is this so damn hard? I want to kick this stupid life in the face but it would hurt my stupid deformed toes so I won’t.

So now what? Well they sent me home with a make shift support brace made out of tape, spray glued onto my foot, that’s supposed to last several days if I keep it dry. I can retape it then myself maybe. Then they made molds of my feet and are making me custom orthotics to support my freaky feet. I’ll get those in a few weeks.

They said it will be very painful, because we need to move the bones, like braces on teeth, it will be a slow process. Part support and part correction from years of walking incorrectly. Tight ligaments, weak muscles, loose joints, a real mess. He added a new rx to my PT regimen for my foot for stretching and strengthening to help with gait. I may never walk without a limp. Yeah okay, just what I wanted to hear.

This tape already affects how I walk, since I can’t flex my foot, it is hurting my knee and hip to compensate. I feel all off balance, and its just some tape. Not looking forward to stiff orthotics in my shoes. That’s just me complaining, sorry. I’ll do it, and I’ll be okay. But I guess I was using my foot to make up for the lack of flexibility, now that my spine is fused to my pelvis, I am walking totally different than prior to this surgery. I feel like an android with new programming, just working out the kinks to walking 4.2, please wait.

I may have always been destined to have a limp, even without the neurological issues that arose from the back surgery. The shape of my foot is so strange. My mind is blown.

I struggled to find shoes that fit me comfortably as a kid, even before the surgery, and I was delayed in many motor skills, like I was 10 before I could ride a bike without training wheels. I was ridiculed for this, never taken to a doctor to see why.

I want to hate my body each time I get more news of my freakiness. I hold back tears until I reach my car in the parking lot each time a doctor says, woah that’s odd, and gets all confused about how to proceed. I want to start over with healthy bones and nerves. I imagine for moments what life must be like for people that just get up and walk with no effort, but that isn’t helpful. I can’t fight this. I can’t hate it, that would be hating me, and I know that gets me nowhere and I’m tired of being nowhere.

No, I need to accept this too, work on compassionately comforting my pain, coming up with a treatment plan to correct or at least slow the progress from getting worse. I need to protect myself. Those quick thoughts that yes, my parents should have done this for me 30 years ago pass over me, overwhelm me with anger and sadness, but then I let it out and let it go. That’s over. Its up to me now. I’m here and ready to do what needs to be done.

I have a feeling all of my bones are formed wrong if they xrayed everything and I don’t just have scoliosis but some other bone/nerve disease. I know my shoulders have similar issues like my toes. I’d bet you anything my hip, knee and finger pain would find anomalies if we investigated. I mean I use a weirdo mouse for my thumb pain and have braces periodically for my ankle, knee, elbow….hmmm. I’m trying to find the connection, asthma, migraines, scoliosis, joint problems, balance issues, muscle cramps, weakness and twitches, leg movement during sleep, sensory issues, feeling cold, fatigue, sleep issues. I found CMT which has some similarities but my feet don’t look like that, not yet anyway. I read some people did not get diagnosed until age 60-70 because it progressed slowly their whole lives. I think I may mention it to my neurologist anyway, get them thinking more holistically if I can. I know this is all connected somehow. I feel so certain my mom did not have fibromyalgia but whatever this mystery condition is, and that I have it, and so do my kids. Maybe genetic testing can be done? I’ll have to ask. I feel so certain that if I didn’t have the trauma component I would already be diagnosed. But I can’t stay on that thought either. Just keep pushing onward.

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.

I forgot to get you up

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That’s what my daughter said to me this morning. “Sorry Mom, I forgot to get you up”

My heart sank into a pool of shame. My daughter should not have to get me up. I try telling her I am already up, try to fake it that I was up and that everything is fine, but she can see how slow I am moving, that I am speaking slowly too.

Some people ask if I am a night owl when they see me online late at night. I say yes. But in reality my sleep issues keep me awake at night. I have trouble falling asleep, trouble staying asleep, trouble getting into deep sleep, trouble with horrific nightmares, trouble with sleep panic attacks, trouble with hypervigilance (I need all the lights on, lock the doors, close the blinds, tv on for grounding noise). PTSD tends to keep me awake until about 4am, so it is difficult to get up at 6am to help kiddo get ready for school and drive her at 7am.

I try to be gentle with myself. I know I am doing my best. I know I don’t sleep well. I know I am not out partying or something that should make feel guilty – And yet I still do – I feel guilty and ashamed and weak and stupid. I don’t want to be like this. I want to be strong and reliable, especially for my kids.

Driving this morning was extremely difficult and I am not even sure I should have been doing it. I felt like I was a bit drunk, like my thoughts were moving through molasses. I have to tell myself how to get dressed and drive, each step spoken out loud.

Seriously middle school starting at 7am is torture. This time of year is terrible and it will get worse with time change in a couple weeks. I will walk around even more zombie like. Doctors have not been able to help me with this. Therapists have not been able to help me with this. I feel better in the summer when I don’t have to get up so early. I have decided it is not SAD, it is not light deprivation or depression, it is sleep deprivation. My mom schedule is what wears me out this time of year. I do have depression, not denying that, but I don’t think it gets suddenly worse when school starts. I think I get physically exhausted.

I do nap during the day, but my hyperarousal only allows me to sleep for about 15 minutes at a time. If I do manage to sleep longer, the nightmares get me and I wake up sweating, screaming and the fear from those last for hours, while the images can haunt me for weeks, months sometimes depending how bad they are.

I am sleeping separate from Hubby right now, which helps a little to reduce the hypervigilance and multiple triggers and anxiety. Unfortunately we do not have a guest room, so we take turns who gets to sleep in the living room to spare our sore backs and necks from the old sofa or recliner.

Melatonin helps me get to sleep sometimes, but can make the nightmares worse. Keeping up on vitamin D helps. Too much of either makes me very hard to wake up in the morning. Exercise helps and except on very bad days I am doing my best to stay active and keep up on my physical therapy routine.

I don’t want any of this, but this is my battle to fight. I am so tired. I don’t feel like I am winning. Hell I don’t even feel like I am breaking even yet. Is this a winnable war? I am not so sure. I think I need to accept this is my life and make it work rather than keep trying for something impossible.

Operation: Feel Better

Last week something changed, another switch flipped and I decided I was tired of feeling like me. Tired. Drained. Empty.

I re-read my DBT binder from intensive outpatient therapy. Hmmm. I am not doing well with self care. In fact I was self hurting.

  • I was staying up until nearly 4am every night and staying in my room until noon.
  • I was not doing basic hygiene regularly, only when I needed to go somewhere outside the house, which is usually only once per week. (Actually two consecutive days, but my worn out brain figured yesterdays shower was good enough)
  • I was only going outside for counseling, dr appointments, running light errands. Not actually spending time outside, just walking from the house to the car.
  • I was not getting daily or even much weekly exercise.
  • I was eating poorly, even binged a few times.

So I did not suddenly see all of this in myself. No. What I saw was my children, turning into depressed couch potatoes. My children, who normally have so much energy we can’t contain it, barely able to move. My children saying, nah, don’t feel like a bike ride or going to the playground. My children lounging in yesterday’s filthy clothes, too tired to change. My children cranky, irritable, snapping at each other instead of playfully making jokes.

Wow. The transformation was incredible. What happened? They had no schedule or structure with school being out. We can’t afford any sports this summer with me not working, so they are all just home, with nothing to do. And with me in bed, partly recovering from surgery, partly my odd sleep schedule, they had transformed and were showing signs of depression.

My brain hurt at this realization.

My stupid binder was right. I was hurting myself. And my kids.

I tried telling hubby my concerns and he was quite unresponsive. He is working so much he was unable to comment on the changes I am seeing.

So I decided on my own to make a change. Because I am mom, I can do this. I can do for them what I can’t for myself.

I told the kids that starting tomorrow we would have one daily activity. It has some rules. They can help me choose the location, give input, but ultimately it is up to me. Here are the rules I created.

  • We will drive to this location, it is far enough from home to require this
  • We will spend at least 30 minutes outside (unless terrible weather)
  • We will be active during the 30 minutes, moving our bodies, walking, playing, etc
  • We will go to a new location every day

So we started this mandatory anti couch potato activity 4 days ago. We have gone to 2 playgrounds and 2 nature preserves. We have invented new games. We learned eggplants have purple flowers. We explored a lean-to someone built in the forest.

When we got home, they asked about setting up the badminton net instead of heading back to the couch. We all played badminton. That was a bonus, not forced or mandatory. The neighbor kids saw us playing and asked to join. Awesome! Yes!

So this is working. I started taking melatonin at night to get back on track. That plus daily sun and exercise is helping me sleep-at night.

I may not be making money, but I am a damn good mom, and I am finally seeing how important I am to them. I am giving them life long lessons, values, hopes, strength. All the things I need. Maybe, just a fleeting thought here, is it possible I do have these things, because if I see them in my children it is a reflection of me? Can I give what I don’t have? Maybe I am not as empty as I feel, it is all somehow hidden from me. Does any of this make sense?

Turtles can’t do yoga

Such an odd feeling to be trapped in your own body. Since my back surgery in April I keep having these odd moments of panic, nearly like claustrophobia, but the small, tight space I am confined within is my own body.

My initial back surgery as a child fused most of my spine but left a few vertebrae at the base in the lumbar L4-S1 and up in my neck free to turn and twist. My recent surgery extended the fusion and internal hardware to give me more stability against my scoliosis and kyphosis. My lumbar discs had deterioriated and disappeared. I had air gaps in my spinal column from so much slipping motion between my vertebrae. This has been corrected. I am no longer in pain. The nerve has been decompressed. I am getting stronger every day. However I had to sacrifice even more of my precious little flexibility.

This may not sound like much to those of you with a bendy, twisty spine. You can’t imagine what it is like to have a solid, rigid backbone. You can’t imagine having perfect posture and never being able to stretch your side muscles, do a sit up, arch or curl your back. I also can’t jump, as your spine is a natural shock absorber, being solid puts all that force onto one spot like a sledge hammer. Not that I was very jumpy, but jostly things like hay rides or roller coasters are quite painful. I have moments when tears come to my eyes now, out of frustration, not pain. I feel like I’m trapped in a shell.

The extra hardware alongside the original hardware have completely eliminated all the twisting. Good for pain. But it feels so odd. Like I am in a full body cast. I simply can’t move.

I can no longer rest my head on Hubby’s shoulder when snuggling in bed. I can barely reach the floor, if I drop or spill something. I have to do a combination of a sumo wrestler squat/ballerina lunge since I can only bend within my hip joint itself, nothing in my back at all. I started driving again this week, and I can barely see for backing up, only having motion in my neck, no longer able to twist at all. I can’t see or get items from the back of the fridge or cupboards. I can’t tuck in my kids, I have to hug them before they get in bed. I can’t reach my dogs’ tummy when they lay on the floor, only with my feet. I can tie my own shoes now, but I have to hold my breath and stretch first. I can’t do even the little bit of yoga I used to do.

I will get used to my new body given more time. I’ll keep working on my leg flexibility too. And I am so happy to walk around without the pain, truly I am. I only wanted to document how odd this experience has been as well, to reach for something that should be within reach, but it may as well be a million miles away because your unbendable body will not let you get there. Kind of like trying to stick your elbow in your ear.

And the toughest part perhaps has been Hubby thinking I am pushing him away, rejecting him. I just can’t get there from here. I can’t get comfortable. I can’t bend and lean into him. All I have is my arms.

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I feel like a turtle with a hard awkward shell. Turtles can’t do yoga either, and they always seem quite peaceful. I know I’ll be alright eventually.