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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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.

Top Shelf Pain

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Upgraded Headache

I admit that when I am in pain and I have to go to church or a meeting of anything important, I will put a lot of effort into my makeup.  At this point, I use Swarovski flat-backs to give a good 3D sparkle.  I have used up to three layers of under-eye concealer just to not look like I got punched in the eyes by lack of sleep.  I use enough foundation to secure a skyscraper and enough concealer to wipe away entire countries.  The I pick a vibrant blush and put it on my cheeks, forehead, tip of nose, and chin.  I blend it well, usually you can barely tell it’s there, but it allows me the pink “alive” look as I sometimes look like I have been sleeping for days (because I have). I use highlighter with reckless abandon; I need EVERYTHING to shine from some angle.

The last thing I choose is my lipstick and that is dependent on the colors I am wearing and how much I want to command attention.  I have about four shades of red that I love, a pink that is like bubble gum but looks great with Spring colors.  Purple for when I wear green.  Then all my special shades from just ‘sparkle’ to matte black.  I usually try to stay reasonable though as I do have to look professional more often than not when I bother to wear makeup.

Here’s the thing that people have a hard time grasping; I am doing it so that I can just feel better about the war in my body.  It has nothing to do with compliment fishing ot trying to outdo people.  I had people asking if I took clients?!  I have not done my makeup because I feel great.  People associate looks with health, and that is kinda natural, but it really isn’t any reason to say anything out loud.

People seem to believe that their thoughts on my looks or condition have some sort of positive affect on me and they just don’t.  I don’t care if you think I look nice and so I must be feeling better.  I don’t care if you think that I look like I am improving.  I have an agenda that does not include you nor your thoughts on anything.

Does that seem harsh?  Guess what?  Don’t care.  See, I have seen enough of people to know that the ones who really are looking out for me can see my tired eyes through the eye designs.  They can see my foot dragging no matter how well I try to hide it!  They ask me how I am doing or they just say hi and give me a hug.  They draw no more attention to me than any normal person wants.  On Sunday, yes sometimes I draw vines with flowers on my eyelids and I give myself golden freckles, I do it because it makes me smile at myself every time I see myself in the mirror or in a reflection.  It is actually great is it brightens up someone else’s day, but really, you don’t have to feel compelled to tell me and then directly correlate that to my health.

It is very possible that I am in the minority because I also cannot take a compliment.  Like, a gentleman at church asked me why I wear makeup when my face is naturally beautiful (his words, definitely not mine!!) and I asked him why men thought that they had the right to comment on how I choose to look?  I told him that he had a wife and SHE is who he can ask about makeup.  He said she doesn’t care about his opinion either.

Let it be a mystery.  Stop putting women, especially women with hidden illness, in the uncomfortable place of telling you to mind your own business.  Ask your sisters.  Ask your mom or wife.  If you get a sassy answer from them, DON’T ASK OTHER PEOPLE!  Find a different rabbit hole to dig down.  The importance of looks has been socially ingrained into our psyche and we can get very emotional if we really try to figure out why we are wearing Jazzberry lipgloss and not Hot Tart lip creme, you might open up some emotional scars, so just STOP!

Just in case you need some kind of answer, I will leave a few:

  • Because I am dehydrated and my skin looks like an arid wasteland.
  • Because I am in the point in my cycle where my face turns into an angry minefield of pus and devastation.
  • Because I FELT LIKE IT, WHY?!

Goodnight!

 

Pain Bomb

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I have been waiting for you to have a good day! (Pain Bomb)

Recently I have had the joyous occasion to have several days on little to no headache.  I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up.  I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain.  For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy.  It hasn’t even really mattered that other things hurt, the headache subsided.

Sure as the sun will rise, I will get another headache.  Probably sooner than later, but hopefully later because life is pretty nice without that burden.  Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me.  If course I believe He can.  Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.

I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments.  We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people.  Religion is not a baton to beat someone who is down.  The ultimate goal should be to love and encourage one another.  Most importantly, to listen to one another so we can now what they are feeling.

I know when I am feeling a headache coming on.  No one has the right to question that, or my faith, or anything.  I have spoken to so many people who have walked away from church or organizations because they were not heard.  People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself.  I hate it.  I know other people endure it and probably hate it too.  Just know, it is ok to educate people and to walk away if they choose not to learn.  It is ok to stop someone mid-sentence and let them know they are too far across a line already.  It is ok to stand up for yourself and straight out tell people exactly where they are messing up.  You are not inferior to anyone, so you are not required to stay and listen to nonsense.

You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people.  These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out.  It’s healthy and they can maybe learn about you with the added bonus of being quiet.

If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax.  The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do.  Be a friend, not a doctor.  We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.

I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later.  If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more.  We should grow in our relationships, and that can hurt, but it is worth it!!

All this being said, I feel the telltale heaviness inside of my head that precedes a headache.  I expect I will wake up with one but I hope that is not the case.  If it is though, I have had an awesome few days and I can live with that.

Laundry Mountain

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Exploring Laundry Mountain

I have done laundry since I was a child.  I did not grow up with my mother doing my chores for me.  It’s just one of those parts of life that takes a bit of time, but usually isn’t the worst thing.

Increasingly, I lack the energy to do the laundry.  I only do my own laundry, I expect my daughter to wash her own stuff (mom is not spelled m-a-i-d, as momma used to say) so it isn’t like I have an unreasonable amount of laundry.  I wash once a week, so it isn’t like I have a build up.  I just have laundry problems now.

Problem: Forgetting I washed clothes in the first place.

Solution: Only wash when staying home, leave the laundry room door open to hear the buzzer.

Problem: Leaving clothes in the dryer.

Solution: If I have the energy, I will just hang everything up to dry so it’s already on hangers and not wrinkled.  Otherwise, stay home, leave laundry room door open to hear buzzer.

Problem: Clean clothes pile up.

Solution: If I have made it past the first two problems, I am probably ready to take a nap.  If I can manage, I separate the clothes that need to be hung up and I fold everything else.  FOLDING IS TIRING!  I just deflate quickly from folding.  Then I lack the will to hang up anything.  Life starts to look like this:

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Put yourselves on hangers!

I took a nap beside this pile of clothes and hangers.  Imagine my dismay when I awoke and it was just as I had left it!  Betrayed by my own clothing.  It was sad.  It took 8 hours to FOLD two loads of laundry.  Then I slept all day the next day.

It seemed like such an insignificant task my whole life.  Now when laundry day comes, I am racked with anxiety about if I will be able to complete everything.  If I have a headache, I already know the answer is no.  If I don’t have a headache, I can probably do it, but I will likely get a headache.

In the end, the laundry has to be done.  Not just because I have to have clean clothes, but because I have a daughter that looks at me to see how I handle my struggle.  If she has to watch me struggle for hours, then I am teaching her that the struggle is real and we have to go through it, but we can get through if we persevere.  Sometimes the solution is to go slow and be methodical and cry if you have to because laundry is tedious and frustrating yet it can be done.

So, for all my people out there who feel like the smallest tasks are the biggest problems, take heart and know that you are not alone.  I know it is hard to not compare yourself to the before times or to other people who can do more, but we have to remember that we are individuals who have issues that can impact any or every part of our lives.  We don’t have to feel less-than because of it.  Of course it is easier for me to type that than to live that out, but it is something I have been working on daily.  I encourage you to do the same if you are able.

For the people reading this who don’t really understand what the big deal is, I as you to imagine only being able to complete 3 tasks a day before you need a nap.  So, after shower and breakfast, you can do one more thing.  Pray that it isn’t laundry!  It could be a doctor appointment, or two scheduled on the same day!  Now you are dead tired.  Le sigh.  Now imagine that every day you had to choose a certain number of things you could do.  Would you skip your shower to get something else done?  Now, imagine that 1/3 of the time, you aren’t even going to be able to get out of bed except to go to the restroom.  Those 3 things you normally do are now piling up.  It feels like this for some of us.  it’s not a great feeling because we really just want to lead “normal” lives, but we hold out hope that one day we will find answers…or at least that someone will feed us and hang up our clothes so we can do something fun too!

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.