Fatigue

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too tired to care what you think. Only interested in coffee and quiet. Go away.

Fatigue

There are mornings that I wake up ore tired than I was the night before.  Almost as if an unseen force was stealing my rest from me!  I may have just spent 9 hours sleeping, but my body feels like it is living off of two hours of light rest and stale coffee.  Let’s not even get into the number of naps one can fit into a day (4).

Usually, fatigue is caused by extreme physical or mental exertion, but I rarely exert large mounts of energy on anything.  So what is the cause?  I would love to say I have OBVIOUSLY been working out for 4 hours every night in my sleep, but my waistline denies such buffoonery.  It would be nice to say I spend 8 hours working very hard each day, but that definitely isn’t the case here.

In fact, if I could manage 8 productive hours, they would NEVER be in a row.  I spent two hours creating things and then my head hurt for the rest of the day.  What now?  Lay down and read until I felt better.  I got a LOT of reading done, but not much else.  I did manage to get an hour of exercise in, but that is because otherwise I can’t move well in the morning.

That hour of exercise tired me out and I clung to wakefulness until the weight on my eyelids slammed them shut for the evening.  Then, BAM!  5am, I am bright eyed and bushy tailed!  In fact, I am sitting here, writing this as I slam down coffee with whipped cream, KNOWING that within three hours I will be taping my eyes open to be awake to greet my family when they come home.  Plus I took the time to pull out the hose and water the potato.  Gonna be a rough one today!

So, what to do about fatigue?  First, try not to ramble in your blog because that is a dead giveaway as to your state of fatigue.  People don’t need to know that the hamster is gone and moths are running the place!  Second, try to plan out the things that need to get done, giving enough time to complete each task without rushing and leaving time between tasks to breath and rest.  Get to know the body signals that warn of an impending crash.  For me, I can’t keep my left eye open.  When it begins to droop and blink slower than the right eye, I already know that I have lost at least 40% of my thinking power and at least half of what is left is dedicated to breathing.

Our society makes sure we know that we have to work, work, work in order to get anywhere in life.  Fatigue does not care about aspirations. Fatigue is not concerned about bills.  It cares only for rest.  Which is what should be the focus when this is the case.  At some point, the human brain and body cannot function in a state of constant tired, but with planning and attention, life can be lived and enjoyed.  Just more slowly, which really isn’t the worst thing in a world that moves so fast.

While I am no doctor, if fatigue is a problem get checked for sleep apnea.  Treating sleep disorders can assist with fatigue if that is the cause, however, I use my CPAP and still I am fatigued.  I exercise, I eat pretty healthy, I drink water, I take my meds and supplements, I get a full night’s sleep, and still I feel like I need more rest, more sleep, and it never seems to be enough.

This is definitely something to discuss with your doctor if you have not previously experienced fatigue as it could totally mean something else is going on.  Something completely unrelated to sleep could be the cause of fatigue and other issues so while I may be entertaining and occasionally informative, I still always recommend your doctor’s advise over my experience.

Brain Fog

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Brain Fog is like when a thing happens in your head but not all the way. Coffee does not help. You will forget.

Brain Fog Brain Fog is like when a thing happens in your head but not all the way. Coffee does not help. You will forget.

This is one of those topics that I didn’t understand until I experienced it.  I figured it was just like not thinking clearly, but it is like thinking through thick black smoke.  I can see glimpses of thoughts or words but the worse I feel, the thicker the smoke is and the easier I lose concentration, focus, and thoughts.

I can be in the middle of a conversation when I am hit with brain fog and it is literally difficult to even understand what people are saying or what they mean.  It’s like their words disappear into the darkness and I understand less and less of what is going on.  I stay out of many social situations because of this.

Honestly, I have 99 problems and brain fog hasn’t been one that is high on my list to deal with.  I have not looked up ways to deal with it as I just like to wing this one.  I let it be the thing that tells me when my brain has had enough and there is not going to be any more “listening” going on.

Most people, in my experience, have not dealt with brain fog and they do not know how frustrating it is to basically wander through the day hoping that everything going OK.  It’s more than just forgetting where I put the keys, it’s putting coffee grinds in the water tank of the coffeemaker and wondering why there is no coffee.  It is putting bacon in the pan and watching it sit there for 20 minutes because I never even turned the fire on.  My personal favorite is when I wear my clothes inside out or two different shoes.

It feels devastating at times because no one wants to be controlled by the unknown and certainly no one wants to be a victim of the wrinkly thing in the noggin.  So, what blows away the billowing clouds of confusion?  Well, for me I have to gamble and hope that either a nap or a whole night’s sleep will take care of the problem.  I have also noticed that if I work during the early morning hours, I can overcome the brain fog for a while but as the day wears on, my mind becomes less trustworthy.

The upside is that there are a few things that can be done to help offset the annoyance of the fog.  Make a schedule of important things either on paper or on the phone.  I do both as it helps reinforce when things will be happening.  I do any paperwork for doctors or really anything early and at home where I can take my time.  I let other people know what my goals are so if I need help, they already know what I was trying to do.  Most of all, I give myself leeway to be whatever my brain allows me to be.  Forgiving myself all of the time meant that I was doing something wrong and I wasn’t, so my perspective had to shift so that there is no “fault” when I can’t do something.  I am not ignoring what needs to be done, I am taking my time so I can do a good job.

My greatest hope is to make the public more aware that the human brain is just as susceptible to damage and issues as the rest of the body.  Unfortunately, this does not allow others to see that there is something going on, only that this woman cannot seem to order her coffee right or that lady always forgets everything.  On the other hand, I don’t want to be identified by my forgetfulness.  So, I will ponder that, maybe on a day when I am not so tired.

Headache

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Like giving birth out of your head. Can completely incapacitate. Does not care about your "plans" or "life"

Headache

Probably the best known and least favorite symptom of Chiari Malformation I is the wretched headache that radiates pain and at times just feels like being hit with a sledge hammer.  Over and over.  Sometimes for days.  Or weeks.  Or, God forbid, years!  My neurosurgeon told me many people take years to discover the true cause of their horrific pain and while I suffered for 18 months, once I was diagnosed, I had my surgery about two weeks later.

The thing is this, unlike many other surgeries, a Chiari Decompression is not so much for the purpose of treating pain although that is always a hopeful side effect, it is to prevent further damage from occurring to the brain stem and spinal column.  Usually, opening up the space provides relief, but this is not always the case.

For me, the headaches are not as bad most of the time.  It is a headache that is pretty steady and is able to keep me just able to live life but not in the exciting way.  I have grown accustomed to the daily ins and outs of pain, they come and go throughout the day.  There are days I wake up and I know a storm is coming, or worse, it is already here.  These are often bad days where I don’t do much and I have built up a guilt tolerance.  I have to rest on these days and that is life.

There is no medication that I have been prescribed that touches the headaches, all the meds that work come from the ER, but that is not where I like to be, so I try to calm my headaches when I feel them getting out of control.  I will stop reading or doing anything that involves using my eyes, often this leads to going to sleep which often helps.  I will ice my head and forehead and that works when the pain is too intense to sleep.  I will meditate, sing to myself, and just do self-soothing actions until I can sleep.  Sleep often helps make them better or even back to normal.

I will be honest with you; I would much rather prefer a cure than the normal headache, but I will take what I can get right now!

If you want to learn more about Chiari Malformation I urge you to visit Bobby Jones CSF and take some time looking around that site. (I do not work for them, but I do  volunteer fundraising to further their cause of education and research.)

Also, if you want to help support fundraising for education and awareness about Chiari Malformation I suggest you visit Chimera Pillow and check out the comfy pillow that my mom created to help me with my headaches.  (I am a spokesperson and blogger, both volunteer…for now.)

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.

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!

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?

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

grief3

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.