Sleep Deprivation

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Sleep Deprivationhome

So, I have been blogging about sleep deprivation.  It was an experience that is nothing like living a full life 20 hours a day.  It is like living an eternity in 7 days.  Losing hours of sleep means losing track of some of my reality and I am becoming more OK with that.

Being away from home was difficult because on one hand it felt like we had just left the house.  On the other hand it felt like we were gone for months and the journey would never end.  My mom was the tether between the world I was comfortable with and this new place that was often uncomfortable.  I miss the overly sure part of myself, but I am glad that I have people on my side when I need them.

By the time the trip was over, I could have cared less about anything.  I just wanted to go home and sleep. I was tired in a way I had never experienced and everything annoyed me.  It took a good amount of time to get home.  Finally I could see my daughter.  I could put on comfortable clothes.  I could drink that good coffee.  The lack of sleep did not diminish my joy upon arriving home.

It did however allow me to sleep for a few days and things are returning to normal.  My head is killing me, school is happening, and I am just trying to keep up with life as it flies by!  I am thankful for my naps and my full night of sleep and for being with my family.  I hope that I don’t have to do anything like this again anytime soon.  I prefer the more boring life of therapies that help me get my mind and body useful again.  Now that I have the diagnosis, treatment can be coordinated and I can begin to get my life back on track.

Honestly, I have been home for seven days and I am still extremely tired.  I am resting, but the appointments have started and I have to try to make the most of my time.  I am still waiting to hear from SSDI, but how wonderful would it have been to have this diagnosis before having the hearing?!  Still, I hope that they see that I have spent this entire time trying to get back to work and right now it is not possible with my symptoms.  I am trying to not think about that as I head into the Fall season.  I am glad that I have direction for treatment.  It won’t cure me, but it will make my life a bit more tolerable and that is enough for right now.

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Tough Pills

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Chiari A tough pill to swallow.

So, one of the most interesting things I have learned is that while Chiari is not the cause of all of my issues, it makes all of them a little worse.  However, the interesting thing is that until the Chiari became symptomatic, I have very few serious health issues.  I had an injured knee that is still functioning on grace and prayer, I also had the issues with my deviated septum and the fallout of needing my tonsils removed.  Otherwise, I was active, healthy, and living my life.

After the initial diagnosis, I had a few restrictions.  Seventeen days later at the neurosurgeon when the diagnosis was confirmed and surgery was scheduled, we went through a long list of things I would probably never enjoy again.  Here are a few of those things:

  • horseback riding
  • weight lifting
  • climbing
  • kickboxing
  • sing opera

Abysmal!

However, once I began to heal, I began to hope.  I was getting stronger everyday, I got a gym membership.  My memory was failing but I had enough family and technology to keep things together.  Then I started getting weak on my left side and from there, much has gone wrong.

The seizures have the largest impact on my life right now as they are quite uncomfortable and they are the source of the memory outage.  at first the seizures were small enough to where I was beginning to doubt my doctor.  Then my stepdad saw me have one in my sleep, and I had one in the pool a few days later.  Now I was not allowed to swim, drive, shower in the house alone, and a few other things.

Ended up in the ER with pulled muscles from my ribs to my hip on the left side.  The night seizures are violent.  They always end in pain, confusion, and long periods of dead sleep.

How do we come back to Chiari?  The headaches.  When the headaches are worse the seizures are worse.  The motion of the seizures can make the headache worse.  It is a cycle I really don’t wish to see play out.  We cannot say what is causing the seizures until I get my study done and maybe at that time they will be able to figure out what started them.  However, if they can’t, I still have to move forward. So much of what has happened and what is happening aggravates symptoms that I live with almost every day.  My herniating tonsils lead the charge against my body and whatever is left up there is still angry about losing to the while-coats.  I did not realize that people lived in pain until I lived in pain.  It is quite different than any other pain.  I know other pains will go away, even if they are acute or last a few days or weeks.

The headache sits.  At times heavy and at times light.  It is difficult to accept that this might always be how it is.  I may be in that percentage of people who get worse after decompression surgery and it isn’t anyone’s fault, it is just how it turned out.  I have spent the past two years in therapy trying to figure how to accept is and it is truly a ginormous pill to swallow when I have to say that we really have a few words and no idea how they are connected.  I just know that in the end, whatever happen will probably disturb my headache and I won’t like it but I will likely survive (based on my survival of every previous incident).

I hope that if you are going through a process that seems impossible, try to make sure you have really accepted the range of possible outcomes.  It is almost impossible to move on in life when we fight the truth, even when it is painful and it hurts.  In the end, the truth is what it is whether it is accepted or not.  It is harder to deal with a lie and heal and come to a new normal.

Sometimes you will have to open wide, take the life medicine, and drink a LOT of water afterward!

Lies I tell Myself: VIII

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Lies I tell myself “I can climb three flights of stairs…”

I have spent a lifetime being active and while I have never done a proper pushup, I have always loved climbing.  Stairs, furniture, mountains, vehicles were all game.  There is a part of me inside that I call “Michelle Unlimited” or MU and she is unaware that I have lost the physical ability to do a lot of things.  She also forgets that things are hot or weigh too much.

MU still likes to do all of the things and I suffer for it.  In the MU mindset, I began shoveling out front and pulling up sprinkler lines.  I think spent two days recovering because I am not supposed to be shoveling dirt in the sun OR doing any type of landscape work.  As soon as I felt better, I tried to dig up a bush for transplant but was caught before I could really get anything done.  Of course I know better, but somehow in the heat of the moment I am able to convince myself that I will be fine if I just use proper form or drink water or whatever lie I am willing to believe so I can feel like my old self again.

One area that I seem to struggle with is stairs.  I grew up in a house with stairs and lived in one for a good portion of my life.  My apartments were upstairs, office is upstairs, everything I like is upstairs.  However, stairs are not the friends they used to be.

MU does not care.

Using a cane has made stairs even more of an issue because my natural inclination is to take the stairs and it’s just getting more difficult because I am tired.  It is a ‘tired’ that is becoming all consuming and I feel like I am drowning in reality.  The stairs seem to make things real, but I am more often floating up a building in the elevator now because I lack the strength to get up the stairs safely and I then have to take a few minutes and bring my heart rate down.

I keep telling myself that I can do it, but I just can’t right now.  Since I now travel with someone else, I am usually corralled to the elevator so that I won’t make the attempt at the stairs.  We know that my seizures seem to be aggravated by activity and the more strenuous the worse the seizures.   It is a little upsetting when something as simple as stairs is taken away and what used to just be useful architecture is now a barrier.  A thing that once held no meaning now represents a failure of my body.

Of course this is something that I am dealing with in therapy and I am trying to stop letting ability of my body and mind define who I am and dictate what I can accomplish.  Reading back over this I am telling myself that it is ok to be upset about losing some ability, but the focus should really be put back into how do I overcome or compensate for this?  I obviously can take elevators.  I realize that I am blessed to be in a city with the strictest building codes, so access for disability is almost everywhere.  I have the tools at home to maybe work a little harder to build up my strength to get up and down stairs, but until I go see the cardiologist, I will just take it easy.  If there is an issue, we have to figure it out first, and honestly, not having to walk up stairs is something that in time, I will get used to if it comes to that.

So much of this journey is having hope but being reasonable if everything goes wrong.  Having a belief system that I consistently study and read and having a support system that is large and loving is what keeps me going.  My family has known for months that I am getting slower and slower on the stairs, now I literally have to sneak up stairs if I want to walk up some.  The only stairs we have at home now lead into the pool or spa and I am not allowed to use either of those without someone there…and I need help getting up the stairs as there is no railing.  (Our pool was built for fun, not children or the disabilities that would later come.)

Maybe for a while I will just tell myself that I can take the stairs but I choose to take the elevator.  Then it feels like my choice, and sometimes the feeling is what gets me through the hard times.  MU just has to find a less energetic way of being awesome.

A Whole Life

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Chiari is not my whole life

However if you knew read my blogs or followed my social media it is easy to assume that all I do is sit around having Chiari all day and writing of my sufferings.  I hope that is not the way I come across, but a lot of my life has been medically related in the past few years, so it is a big part of my life.

I am sure that I have spent time talking about some of what I do at church, but I also have other things that I enjoy that I suppose I don’t always speak about.  Even I have to remember that pulling back the veil also means exposing how I spend time enjoying myself during difficult times and what I do between flareups.

At my laziest, I am watching Gumball on Hulu.  Just over and over.  At my best I take walks around my neighborhood and take pictures of people’s flowers.  I make videos, I play ukulele, I bake cookies.  I have a range of interests that is ever expanding as I crave information and knowledge.  One I am able to master something (which is almost impossible now, but it happens) I am ready to move forward and learn something new.

I just picked up a unicorn cross stitch project.  I have avoided cross stitch and needle point my whole life, and here I am, ready to learn.  I have been considering crocheting or knitting again.  I know that my fingers aren’t as nimble as they once were, but I will use them until they don’t move.  I am thankful for every bit of strength I have left.

Sketching, drawing, and painting have always been activities that I enjoy but I am not that great at.  The funny thing is that at this point I understand it is more for my enjoyment because I am not in the business of selling paintings.  I can enjoy my ugly paintings.

I have taken to watching Marvel Comic Universe movies and reading DC comic books.  Neither have ever been interesting to me, and they still aren’t really, but it gives me something to talk to other people about, so in that sense it is worth every minute I put into it.

Writing has become a necessary part of my life, so I have begun writing a book.  Still debating on publishing the one I wrote.  I just chaired our Chiari walk and I am plotting and planning, praying to get the right people in my path.  I am ready to start taking advocacy to another level and while I know I have a few obstacles to overcome, I know this is where I am supposed to be.

I suppose thinking about it, it is hard to see how all of these things are woven into my life along with the family, church, and so many doctors.  However, I encourage you to MAKE the time to do something that you enjoy for at least 30 minutes a day.  An hour if you have access to the time.  I usually can’t focus for more than an hour or so.  If I have a headache, maybe 15 minutes.  Always keep something with you that you can do to keep you mind functional during slumps in the day.  Some days I just play with my fidget dodecahedron (yes, I am THAT girl) because it requires zero thinking.  Other days I get on my 3Ds and play video games.  I can do it for about ten minutes before I tire of that!

There are so many options, even listening to audio books and just resting.  All of these things are great for helping to get through days that aren’t the best or the worst.  I look at what I go through just trying figure out what my brain is doing and I know that other people out there are going through the same or worse with less support or resources than I have.  My mission is to figure out how to change that so that people can get through these times with hope and purpose in their lives.

 

Pain Unthinkable

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Chiari is pain unthinkable

When the headaches began they were small blips on the radar and as time went on they became longer, stronger, and more debilitating.  Three and a half years after decompression I still suffer from headaches that keep me laid out for days.  I still have nausea that may be one of Earth’s most powerful sensations.  Added onto the melody of Chiari head woes is the harmony of other dysfunctional systems of my body that cause discomfort or limit my life.

Everything in my body did it’s own thing after my surgery.  It has resulted in three years of painful tests/procedures that often are repeated or are peripheral but need to be looked at.  I have been poked, prodded, electrically stimulated muscles, the endometrial biopsy that almost made me rethink life, and most recently this colonoscopy and upper endoscopy.

I won’t ruin all the fun because this is going in the other blog 

Needless to say, they use the word “discomfort” in a VERY deceptive way!

There are times that my body is stewing in pain and at some point it doesn’t matter because everywhere hurts.  I prefer to stay home and experience this feeling where I can complain and fall asleep.  There are times when I am able to distract myself but I am often left alone with the pain.  Not that there aren’t people around me who care for me, but no one can really come inside my body and help me bear the burden of pain.

These are the times I talk to God and wonder how I am supposed to be of any use to the world if I am laid out in pain.  I am at the point of giving guardianship of my daughter to my sister because I need to be able to get through this time in my life without scarring my daughter.  She has had to deal with a lot, so we all agree that it is in her best interests to be away from the medical whirlwind that is my life.  Luckily, she will be staying in the state and so we can still hang out and have a close relationship.

Chiari and all of it’s baggage has hurt my body, my emotions, and my mental state.  It has taken two years of therapy (psychologist and psychiatrist) to realize that the past is gone.  I will never be the old me.  My body may always hurt, but that doesn’t mean that I can’t learn to cope and make the most of my better days of health.  I just chaired a walk and I am still recovering because I had this procedure three days later.  These days I have to remind myself that even in my pain, I can draw a picture of how I feel and write about it and that will help me to be distracted and to hopefully form some sort of memory.  At the very least, an accurate record of what I did and how I felt about it.

The pain of my Chiari has managed to infiltrate every part of my life and body, but I am not going to let any of what is happening to me stop me from talking about it, spreading awareness about it, and getting out to make things happen.  I realize that nobody knows who I am, but in the next year I hope to change all of that.    I encourage you to take an action to spread awareness or to educate.  Blogging is a great start and you can find many ways to advocate.  It’s time to change the face of patient care to something a little friendlier and more accepting and understanding.  I am not sure if I am a log, tinder, or a match, but the fire will be lit and I will be there fighting for better care.  It’s time to infiltrate Chiari, learn it’s secrets and destroy it’s secret lair.

Chiari Bladder

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“you need to pee!” “OK. I-” “But you can’t!” “But I-” “Gonna pee on yourself” “If you just-” “NO!” Chiari Bladder

It is hard to imagine that a part of my body that I have had control over for my whole life is now working on its own.  I remember thinking I had an infection when it got noticeable.  I would have to urgently pee, then like, nothing.  Drip, drop.  It would happen many times over the day.  I sent to the urologist several times, there is nothing wrong with my bladder or my urinary tract.  It is getting bad signals from my brain.

The event that made this really fun is when I had a focal seizure and peed on myself in the kitchen.  I didn’t realize at the time it was a seizure, I just remember I was looking out the window, then my leg was wet.

LIFE!!!

I do take a medication now that stops the excess bladder spasms and helps with the incorrect signals, allowing my bladder to actually fill before needing to go to the bathroom but also keeping it closed when I was not going to the rest room.  Of course, the muscle it too weak to control stress incontinence and well, that is how it goes!

At 30 something I am getting used to the idea that my body just kinda functions how it does and honestly, this is nowhere NEAR the the worst of my problems right now.  I mean it it actually is close in proximity, but not in the grand dysfunction of other “body things”.

Writing about this is super weird because I am such a private person, but I felt so alone after my surgery.  After things didn’t go how we expected post-op, I was left to figure out how to handle it.  I found some good friends and the best thing they did was explain the underbelly of chronic illness.  They told me these things would happen, so while I hoped that it would take longer or we could prevent it I didn’t feel blindsided by the dysfunctions I experience.

So I hope that sharing my own stories helps someone feel like this is just a thing that happens.  It doesn’t happen to everyone, but that doesn’t make the rest of us feel better!  I also encourage others to share their stories because the more diversity there is out there, the easier it will be for others to relate and feel a little more “normal”.

Lies I Tell Myself: VII

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Lies I tell myself. “This is all a bad dream…”

There are days in my life where everything is so absurd that I am positive that I am stuck in a bad dream and I desperately want to wake up.  This past week has been full of them.  I was supposed to get a upper endoscopy and a colonoscopy and the day before I get a phone call that I now need a release from my neurologist because of my seizures and tachycardia.  From the patient point of view all I know is that when I eat my stomach reacts painfully, at times regurgitating food I ate hours prior.  Then when it empties it is like having a baby pass from my stomach to my small intestine.  From there it can sit for days…until it eventually moves into my large intestine.  It just grows until my abdomen is tight and painful.  I will spare the details of the end of the journey, but know that I would rather not eat than experience this everyday, all day long.  I have dealt with this for six weeks.  I had a seizure and I haven’t been quite right every since.

I have lost close to 20lbs, but have managed to add some weight on.  I don’t want to be sick-thin.  I am having trouble taking my vitamins and it my energy levels.  I have calmed down my level of activity at PT and Dance because I have been having issues and falling.

All of this seems unreal to me as I look back at what I just wrote.  It feels like last week I was living a normal life and now all of that is gone.  In reality, it has been almost three and a half years and I simply have recollections of feelings and notions of events that have no grounding in time.  Of the physical horrors my body commits all too often, it is the existential horror of not having a firm grasp on the passing of time is beyond my greatest fears.  I always wonder if I will recognize my daughter in ten years.  Will she stay twelve in my head forever?  Seems like I saw her yesterday but she has been gone for almost a week.  I literally have to go through social media and my memory logs and question people who I may have been around to figure out what is happening in my life.  I rely on my phone to tell me everything I have to do, when it needs to be done, where to go to do it, and all the people who are involved.

Still, every morning right before I open my eyes, I feel the stiffness of my joints, I assess the level of pain in my head and neck and shut off my CPAP and realize THIS IS MY REALITY and my dreams are only a temporary respite from my daily issues.  Every night when I go to bed, I pray that I wake up to something different…just not worse.

This is my reality that I have to accept again every morning.