Chiari Insomnia

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Chiari Insomnia: The headache that never sleeps

My idea of a “real” headache has changed drastically since 2015 when I experienced the first of many unrealistic headaches.  The headaches I used to experience would be welcome friends today.  What pain meds am I on for it?  Glad you asked!  None!!

Right now, I deal with the pain through sheer determination.  The worst happens to be when I need to sleep.  I can be so tired, by whole body is ready for the sweet release of REM sleep and the feeling of a hot metal bit boring through my brain keeps me right on the edge of sleep.  Where any movement is greeted with a sledgehammer to the back of the head.  I feel like I am being held hostage and tortured by my kamikaze brain. It doesn’t care if we both go, as long as I hurt.

The morning after a night of this insanity is the freshest Hell on Earth.  People are annoying for no reason.  It’s hot.  The coffee tastes off.   My clothes don’t fit.  My thoughts are slurred.  Everything that comes out of someone’s mouth is oer stupid than the last thing I heard.  It devolves quickly into a mess that I care not to be involved with.

So, how do I cope with this kind of headache AND not kill every human?  Easy!  First, if I have been up all night, I cancel all of my appointments (if possible).  I can handle one appointment for a short period of time.  Otherwise, I limit my interactions to my family members (so no phone calls, texts, or responding on social media).  I can be honest with my family and tell them that I am not having a good day and I am irritated and annoyed and I am having trouble controlling it.  These folks will listen to what I am saying and give me the space I need to nap or watch cartoons, or just sit and be mad.

Unfortunately, we cannot always control our symptoms, even if we are doing everything right.  We still have the power (in many cases) to choose where we go and who we interact with.  I also understand that everyone doesn’t have a super-supportive family like I do, so it may be harder to find your voice or set your foot down.  This is my way but surely there are several other ways to handle post-insomnia irritation.

I ALWAYS recommend therapy because it can be a great way to get your feelings into the air so you can rationally think about how to deal with them with the guidance of a professional.  There are plenty of resources online to help deal with anger and non-medical means of pain control.

In the end, you may have episodes where you just get out of hand.  It is difficult, but grab a tall glass of milk while you eat crow.  Apologize and try to explain why you behaved in an unseemly manner.  Most people understand intolerable pain.  It may not qualify as “your level” of pain, but everyone knows their worst pain.  I am sure that someone out there will say there is no need to apologize.  I wholly agree, but there is nothing wrong with making the first step to reconciliation, especially when it is over something that can easily be forgiven and laughed at.

This life isn’t what we asked for and it probably isn’t what we want, but we all have a role to play in life and for some of us it is to be an example, a beacon, and an advocate.  Once you realize what you need, you will be able to help others obtain the same thing.

Also, can I sleep now?  Is this enough words?

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No Worries

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Days with no worries…

My life is a carefully planned and organized mess.  Looking at my phone, I have the same things happening almost every week and that is good because I have developed a certain expectation of how my week will go:

  • Sunday – Church
  • Monday – Helps Class
  • Tuesday – Therapy
  • Wednesday – Bible Study, Lunch, Church
  • Thursday – Kiddo At Class
  • Friday – Study for Monday
  • Saturday- Study for Wednesday

At times something is skipped or added, but this is the basic schedule outside of regular everyday stuff.  So, next week, I don’t have therapy.  That gives me a whole day at home to prepare for my walk!  Or sleep.  That is one of my favorite activities.

Every so often a day happens when there is no studying, no school, no class prep, no planned activity and I get to go outside into nature and just enjoy being outside.  It’s the most enjoyable for me when I can go without an expected return time.  When I can just go and spend hours among the wildlife and plants is when I feel the most normal.  I can still smell the plants and feel the breeze and it awakens a familiar feeling of peace and joy inside of me.  I used to take a lot more time to go do these things but since my surgery I don’t have the tolerance for hot or cold so I have to pick specific times to be out.

Still, the sacrifice is worth it because for a brief period of time I feel like me.  There are no worries or doctors or tests.  There is only nature and Michelle.

Our lives can be so hectic and are often spent inside the house or the car or a doctor office.  If you get the opportunity to spend time outside doing nothing, TAKE IT!  It is always best (in my opinion) if you can do it alone because other people tend to distract from true relaxation.  I don’t like to mix people and nature.  You never know who is going to go out with raspberry lip balm and get chased by giant bugs.  This person may not be a great companion in nature.  They likely are great to spend time watching anime with.

I feel that it is important to find something in your life that just allows you to relax.  Not the type of relaxing that comes with creating or hiking, I mean where you completely give your body a break, lay in a field, and enjoy the breeze without a care in the world.  You think about how awesome it is that you made it to this point and dream of ways to make it more awesome!  The most important thing is that you realize that it is healthy to take a break and appreciate the world around you.

It won’t fix your problems or take away your pain, but it helps keep all those feelings in perspective and gives you hope for the future.  I want everyone to have a hope that tomorrow is going to be better (despite all the signs) and even if it isn’t we can survive it and still keep our hope.  I want hope for everyone.

Stage 2: Pleading, Bargaining, Desperation

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Now I went to God and made my petition known.  Not only was I asking for my old life back and none of what I was going trough, but I would read my Bible even more than once a day, and do more Bible studies, and teach more, more conferences, more Duolingo Spanish and Italian every night, Lumosity everyday, go to the gym, cook everyday for my family and other families, just please give me my life back.  If not my whole life can I have no headaches? Or can the nausea go away? Can I stop falling? Can I just write more.

One thing I feel negatively affects a lot of people is that they feel like because they are Christians or “good people” or any religion is that many people are made to feel like their illness or condition is somehow their fault.  Lets be honest here, you can be a Christian and get cancer. So can an Atheist. Neither deserves it more than the other. Sometimes people get cancer and cancer doesn’t care your religion, skin color socioeconomic background, or any of that.  I do not struggle with feeling entitled to better health because I am a Christian. However, I still want the pain to go away, and that is my point I guess. My beliefs have not blinded me to science, I knew there was a chance I would not recover well, I just chose not to believe it which made getting through this process more difficult.  

Sorry, just trying to ramble for understanding sake, but might not be working.

Anywho, at some point I ran out of things to bargain with.  At the worst of times I pleaded like a dying man for comfort and peace.  It’s a hard place to be because when it hurts so bad you think you might die, surprisingly, comfort and love become just was important as medical intervention.  

I don’t want to leave out desperation.  First, the desperate thoughts come. Here is a list of some of my own:

  • just go back to work and work until I am physically broken beyond repair.  Handle the pain by developing opiate relationship. (seriously, what is that?!?)
  • try to cause an accident that causes enough damage to be immediately declared disabled.  (the risks were too high with this; I could live an even worse, more painful life)
  • drive head-on into another car (I didn’t want to hurt anyone else tho, so nope)
  • take sleep aids all of the time and just sleep life away.  (my family would notice)

I acted upon none of these thoughts.  See, when I was in that place in life, those thoughts in parentheses were brought to my attention by the people I love.  I think this is why it is import to have a support group around you who you can speak freely and frankly to without judgement.  That does not stop the thoughts or change how I feel, it gives me perspective so I can see my thoughts from someone else’s eyes.  There are times I say what I am thinking out loud to my family and just hearing it lets me know that it is probably not a positive or productive thought.  

It is my body (and not someone else’s) so I have to keep dealing with it’s failures.  Coming to terms with the fact that there may be nothing that can be done to “fix” me is accepting my limitations, my perceived inadequacies, and loving myself in spite of the changes I have undergone.

So, it’s like finding a unicorn.  You really want to, but when you try, it gets difficult quickly.

From time to time I revisit this stage.  As a musician, I tend to crave new stages, but the familiar ones are so easy to glide onto.  The show must go on, so off I prance to the next stage that will grace me.

 

Catch Them All!!

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Zzzz’s, Catch them when you can!

What a wonderful thing naps are.  They are like nighttime sleeps but shorter (usually) and at a less expected time of day.  Say 10am.  I wake up pretty early, so by ten, I am ready!  I can wait, but the longer I wait, the longer I will sleep.  By 8pm, I will just sleep until the next morning.

It’s always needing naps that is the problem.  People feel like I maybe shouldn’t “need” a nap because I am an adult and my only defence is that I can’t say when my brain is going to stop being useful because it is too tired.  If I do 45 minutes of speech therapy I have to take a nap.  My brain becomes tired and useless.

If I study for an hour, my brain gets pretty unfocused and really only wants one thing.  Nap.  The sad part is that people really have no understanding of how the brain works.  even a little.  Enough to explain what is going on so they understand would be a good start.  People who have never been so mentally worn out that they can’t think really have no basis to even believe it is possible.

Still, whether someone believes it or not, I need my naps.  This week I have been averaging 13.5 hours of sleep including night time and naps.  That is over half my day.  I miss the days of sleeping for 3 or 4 hours then 20 hours of energy and magic but now I have accepted that I work at a much slower pace.  I might accomplish two things all day.  some days one or both of those things might be doctor appointments.  I had to learn that it was ok to be tired after appointments.

I imagine this is a source of depression for people other than just myself.  I am no doctor, but when you can’t sweep the floor or do the dishes because the mental energy isn’t there and the physical energy isn’t much better, surely many people would begin to question their current value relative to their perceived prior value.  They might try to do the chores but eventually their mind and body will win and they will feel bad.  This is the seed being planted.  I worked in therapy to get through a lot of my views of my physical abilities now vs. then.  I am really no better or no worse, I am different and that’s cool.

I just need more naps now, is all.

Mornings With Chiari

“Sleep well? Hee hee hee”

I have been having sleep disturbances.  I can’t remember how long they have been occuring.  Recently, I awoke from a nightmare where I couldn’t breathe and although I was now awake, I still couldn’t breathe.  It scared my sister enough to insist I call my doctor.  I now have to schedule a sleep study to find out more about my sleep apnea.  

In daily life, it basically robs me of sleep.  Then I am tired the following morning and I usually try to wake up by drinking coffee, but often, I have to take at least one nap per day, sometimes two or three. Being immobile for so long makes my joints hurt and keeps me from participating in life.  Hopefully, the sleep study will help me get better rest.  

Future for One?

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“I am gonna spend the rest of my life with the man I love!”                                                               “I am getting a headache.  I can’t wait to spend it alone.”                                                                    “I believe we have a date?”

2016 will go into my journal as a very forgettable year; I can’t remember most of it.  The things I can remember are worth forgetting (looking at you, election!!).  More than any other year, I have seen a large number of my friends get married.  I put so much energy into bettering myself and learning who I am and want to be, that I decided that a relationship was a drain of my precious, limited time.

As I look forward to 2017, I have not a single plan.  There is no more school.  There is no more work.  I have hour upon hour of free time to think about how I should have reached out and maybe went on a date or two.  It felt different when I was consciously decided to not date.  Now, I am getting ready for my disability appointment and I feel like that is a black mark.  I am no longer a productive member of society.  I do not keep a schedule.  I have gained weight since surgery.  I can’t remember much of what I hear of say.

Honestly, a year ago, I would not have wanted to date someone with these issues.  I didn’t have time for that.  Now I guess I have projected that onto myself and I don’t see how anyone would want to date me.  How would someone feel if I cancelled half of our dates because I “don’t feel good today”?  How would I feel?  How would someone feel if I needed another brain surgery?  Would they be willing to deal with me in a physically infantile state?

I have always worked the loneliness away.  I discovered how smart and fun I am.  I finally tapped into my true singing voice. I found a home in my church family.  I finally was feeling confident parenting alone.  I felt like a combination of all these things was enough to keep me asleep at night.  Now, I am awake at night, living with pain, and knowing that I only have 4 years until my daughter spreads her wings and I will be alone.

I hadn’t planned on worrying about this for another 30 years and I had hoped to not care by then.  I am no longer flirty.  I do not wish to bear children.  I could care less about shaving my legs.  I am just a girl who wishes it would all go away and I could enjoy my previous life.

That being said, I will be happy for my friends because they deserve to be happy and encouraged.  I will start attending weddings in 2017 (breaking my 20 year anti-wedding streak!!) and I will be a witness to their happy moments.  I will cheer for them and clap for them, and smile at them.  Then, when I go home and settle in after these events, I will thank God that I am alive and able to see that kind of joy and happiness.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This is the life!

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“I wish I could stay home and not work.  You are so lucky!”                                                                                                                                                      “I know!  Having a constant headache and being broke.  THIS is the life!”

When we work a lot and are constantly on the go, we tend to see people who don’t work as either lazy (if they aren’t trying to work) or on a medical “vacation” (if they have ceased working due to illness or injury).  I did not realize how ignorant this view is until I was put on a medical vacation.  When they told me I could not work any more I was relieved because I was scared of hurting myself or someone else at work while I was having my symptoms.  After a while, I began to feel smothered by the nothingness that had become my life.  Waking up every morning knowing that I would not be productive made me feel useless. When my short term disability ran out I became 100% financially dependant on my family.  I have to ask someone to buy my deodorant.  That is the worst feeling for someone who has worked since age 14.  I worked and worked and worked, and still, Chiari has robbed me of even the most basic of dignities.  I have to find the blessing in it (which is that I have a family willing to sacrifice A LOT for me) and I hold on to that through everything.  There are people in my position who do not have a family that loves them like mine or that is able to contribute financially.  But please, don’t mistake you need for a vacation as an equal for my requirement of not working.  After all the doctor’s appointments, tests, labs, imaging, vomiting, crying, and begging God for mercy, I NEED a vacation.  I can’t afford one, though since I am not able to work.  Be grateful that you have a reason to get out of bed every morning that pays you.  I miss my job fiercely.  From the moment I wake up, I am a bill.  I use electricity, water, I have co-pays, I need toothpaste and food, clothes, AND I have a teenager who needs everything that I do.  Be as thankful for your ABILITY to work as I am for my family’s graciousness everyday.