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.

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Have you tried-

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“Have you heard about-” “YES!”

I KNOW I have covered this topic before, but it is one that just keeps coming at me and so I will keep bringing it to the attention of all who dare to read on.

See, I have some cognition issues and memory loss, but I have not lost my (above average *ahem*) intelligence.  I am able to read Al Gore’s Internet like everyone else and I am often looking up studies and medical information.  I have heard about memory medications in testing.  I have heard about therapies being used to help with brain damage and PTSD.  I have heard about the new findings concerning how our gastro microbiome affects how we think when it is changed.

Chances are, unless you have Chiari or are in neurology, I know more about my body and what medical science has to say about it than you do.  Just like you know things concerning your body better than I do.

HOWEVER

Let’s get to the real problem here.  You somehow feel entitled to give me medical advice.  Somewhere in your lifetime, you gained the gall to tell people how they should care for themselves when you chose to not go into the medical field.

Now, I do have friends that are in the medical field in specialties that give them the proper background from which to draw and share information that might be beneficial to my health.  The thing is, they realize that many times, I need them to be my friend and NOT my doctor.  I need them to listen to how the pain affects me and tell me that they are there to listen to me.  If I do need to ask a question, I will, but they seem to understand that I have a team of doctors already working to help me.

Advice is usually appreciated only when asked.  Don’t be ‘that person’.  The one that I have been talking about the whole time!!!

*P.S.- ESSENTIAL OILS ARE NOT CURES!!!!

I Am No Hero!!

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I am no Hero!

Going through the medical dog and pony show has been quite the eyeopener for me.  I now understand things about people in pain that I never even considered.  I also now feel the inconsiderate thoughts and words of others and it can be very alienating.  Some people are mean because they think it is funny, some because they don’t know better.  Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.

Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner.  They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life.  And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.

I am no hero.  When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died.  I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery.  I hear my daughter gasp.  Mom’s phone was on speaker because she was driving.  My daughter, who was on her way to a performance, had heard me lose my marbles on the phone.  I went to my sister’s house and cried for three days.  Sometimes she sat and cried with me.  Other times, she let me cry in solitude.

Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck.  He has his own source of pain though.  I suppose this is where we differ.  He has turned his pain into a mission and proactively fights crime.  I am good to be making it to my doctor appointments.  While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me.  So that I can have the ability to speak out for other people who don’t have a voice.

Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living.  I feel like that takes away from people who are actually heros.  A firefighter puts his or her life on the line daily to save others from dangerous situations.  THAT is a hero.  Police deal with all sorts of insanity, knowing every day that they leave their house might be their last.  THAT is a hero.  Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally.  THAT IS A HERO.

My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands.  HE IS MY HERO!  He got me out of there alive.

Still, I am no hero.  I feel that we shouldn’t use that word so lightly.  If put in my situation, most people would do pretty close to what I have done.  Deal with it day by day.  Try to enjoy the good times. Complain about the bad times.  Really, it is a dull existence that pushes me to want to become a hero of sorts.  I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors.  Not nearly as heroic as it sounds.

Don’t let that fool you though.

I plan to be a hero one day and use my abilities to assist my community.  Then I can accept being called a hero.  Living in pain is a life that many people have and they make it through.  They go through the same things I do, at times more and they aren’t being called heros.  They are often forgotten about.  Some are considered a burden and are made to feel ashamed about their condition.  I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration.  I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me.  Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?

No.  No I am not.

I do not wish to be.  I want to be Michelle.  A mom.  A minister.  A witty woman.  All of this other stuff that is going on is just me doing the things that I have to do to keep going.  I am not sure how to just give up and that is NOT heroism, it is simple perseverance.  I have to keep going so my daughter has me here to help guide her through life as well as I can.  That is the SAME THING that every mother does no matter her situation.  Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.

Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives.  I would like to feel welcome and loved instead of having to live up to the standard of a hero.  That is too much burden to bear.  I am human and I fail.  I have moments where my faith is wearing thin.  The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.

So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses.  Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing.  You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy.  There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!

While the sentiment is lovely, save it for the people who deserve and earn that title.  I am a fighter who is training to be a hero someday.

Splitting Headache

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It can be hard to accurately describe one of my headaches to someone who has never endured an injury that resulted in severe nerve pain.  In the spirit of spreading awareness, I would like to share some of the descriptors that I use when dealing with brain pain:

  • feels like my brain is being pulled out of the back of my head
  • feels like someone is shoving my brain into my skull
  • feels like a slow-motion explosion is happening (for hours) in my head
  • feels like a ball of magma at the base of my skull dripping electric magma onto my spine
  • feels like someone shoved rebar up my spine and impaled my head and is pouring concrete in my shoulders
  • feels like someone is blowing a balloon up in my head
  • feels like being hit by a baseball bat/2×4/pickaxe/sledgehammer/grenade/lead pipe at random intervals
  • feels like the hand of God pushing my head onto my shoulders
  • feels like my brain is leaking into my neck

I could go on and on.  There is not a pain that I can’t accurately describe using colorful language.  At times I use more color than at others.  I could never use just one set of words to describe the pain that graces my grey matter as it continually is morphing from one misery to another, afflicting different body systems as it crushes my faith in endorphins.

If you can’t imagine describing your pain in this kind of detail, count yourself among the blessed.  Hopefully that means you have never had to experience this pain.  If you have a list similar to mine, I offer my condolences.  There is no one who should have to deal with pain all or most of the time.  Unfortunately this is not how the world works and some people live with their pain as a constant companion.

So, if you run into someone or you know someone who has chronic pain, don’t even pretend to understand the level of hurt they endure.  As much pain as I endure, I don’t act like I understand the pain of others, I only know my own pain.  Just offer your support and comfort.  Chances are, any advice you have to offer is terrible or they have tried it and don’t go on a quest to fix them.  Just support and love.  Trust that you probably don’t know more than their doctors, so no medical advice!  Just support and love.  You would be amazed how encouraging friendship can be.

Plans

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Most people make plans for the summer and I suppose I do too.  Turns out, my plans are not always fun but they are quite necessary.  Like jobs, medical appointments don’t take the summer off so I am trying to enjoy the time I have around these visits.  The downside is that seeing specialists means that I scheduled most of these appointments in the Spring and they take precedence over every other event that crops up during the summer months.

Birthday party?  Not on a Friday, I have Music Therapy every Friday and it is tiring.  Anything on a Tuesday is forbidden since I have my regular therapy and I also use it as a doctor appointment day.  Sunday is church, family, and volunteer day.  We are now down to 4 days that aren’t even in a row.

Now, because I finally received my accident settlement, I was able to put together a week where I had a staycation on The Strip and I managed to live that good vacation life for 8 days.  It was wonderful to be able to take that break because although I will spend the summer being tested and evaluated, I won’t have any answers for a while.  I will still be in a state of limbo for a bit and that is just stressful.

Luckily, we have a pool and cable and air conditioning here at the house.  So, I think that while I can’t make it out of town or to all of the events, I still come out on top.  I don’t actually have to leave to enjoy a smoothie while floating on the water.  I am learning that every situation has a better viewpoint than I give it credit for.  I am a little jealous of people with the means and ability to do all of the things, but I am surrounded at home by the things people go out to find!  Fancy coffee?  Got it!  Hot tub?  Got it!  High-speed internet?  Got it!  Plus an awesome family is included!

I may be at home, but home is like a home away from home but still at home.

Stage 7: Acceptance

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WE MADE IT!  At least in blog form (right??)!

This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult.  See, I am not really at this step yet with what I am going through.  Maybe some things I have come to accept, but as a whole, nope.

So how do I know how hard it can be?  My brother was murdered when I was 18, I was stuck in my grief for about 15 years.  I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:

  • My brother was murdered 2 days before my birthday in an extremely violent manner.
  • There was nothing I could have done to prevent it or save him.
  • I can not bring him back.
  • I can not turn back time.
  • The future we planned will NEVER come to pass.
  • I did not die that day, it just felt that way.

That is only six things.  I lost myself for a long time trying to wrap my head around those six things.  That is a long time for six things.

With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end.  It isn’t as final as death.  It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins.  The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.

If you have been blessed to make it to this stage you deserve a standing ovation.  I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward.  We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.

 

I just want to thank everyone who read all of these posts, or even just this one.  My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both.  We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are.  We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more.  Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.

Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general.  Let’s talk about out mental health so we can be healthy.  Grief is healthy when completed and not stalled.  If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system.  There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations.  No Shame!

I want to do things…

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The things I wanted to do today!

After the gnarley headache, the nausea is the worst symptom I experience on the constant basis.  It is usually low level, but if the weather changes or the headache increases, nausea will shoot up and become THE ONLY THING THAT MATTERS!  My daughter is hungry? NAUSEA!  Front door unlocked? NAUSEA! House on fire? NAUSEA! LET ME LIVE!!!!

For most people it is a feeling they may have for a few hours or days, a couple weeks if you are pregnant (unless you are me, then 40 weeks) but for me it has been over two years and really, I am sick of it (no pun intended, but good for me).  It’s that feeling of sick RIGHT before you actually throw up but I just don’t always throw up.  I pray that I won’t as it makes for a terrible headache/vomit cycle that can get out of control quickly.

The worst is when I have a day planned and NAUSEA hits me.  It is paralyzing.  You don’t move unless it is to a more laying down position.  I lay there thinking about the things I was going to do.  Some things are only available for a time like dinner with friends or sales, some things I can do later, but the worst things are the ones I have planned with my daughter because she gets the short end of the stick.  She often ends up supplying my ginger ale and ice and ice packs.

I want to be able to do the things that I plan but I am at the mercy of a body that is kind of confused right now.  Most days I get through it, I ignore it, I get ginger or drink ginger ale, but some days, nothing but meds can cut through the nausea and the meds come with their own set of problems.

So, if you know me and I tell you I just don’t feel good, that is actually code for, I could throw up at any moment.  I am just being polite.