The Monkey’s Phantom Pain

So, my left foot felt like it was being stabbed in the sole last night.  My left hip was in pain, and I assumed it was just my body looking for more attention.  As we left church, the pain became just a burning sensation when I tried to walk or it touched something.

I wake up this morning, step on the left foot and the whole thing hurts up to my ankle.  So, I stepped on the good foot, and hobbled my way through the morning until I couldn’t take the pain anymore.  While all of this was going on, I was blessed with cramps (yay, no baby!) and my headache began to intensify.  I already know that Headache + Cramps = FIRE IN THE HOLE!  I have already apologized to my family members in advance because I can’t get my shot until Tuesday and by then, the house could be on fire.  Not literal fire, but mass emotional upheaval.

I decided to take a nap.  I wasn’t sleepy, but sometimes the pain wears me down enough to just sleep.  Sure enough, I woke up, put down my left foot and now the pain has risen above my ankle.  It’s making it hard to walk and the shillelagh is becoming my best friend.

There isn’t much to do until I see the neurologist.  Four days away.  I suppose by the time you read this I will have already gone, but will have posted an update!  It is difficult to just wait but really nothing that can be done about it.  Most appointments have been cancelled so that I am at less risk of hurting myself.  I am hoping that I can get through these next few days gracefully.  Especially Sunday.  I plan to be at church no matter the pain.  I just have to keep my mouth under control while I am there.

The biggest issues are pain and boredom.  When I am in this much pain it is hard to focus on something enough to be entertained or distracted.  I suppose that is why I just try to sleep.  I don’t take pain meds and while some of my meds help with nerve pain, I can only take them so often because of their side effects and they weren’t prescribed for acute onset pain, so they aren’t the way to go.  I hope that the neurologist has a plan because otherwise, we gonna talk about getting a new brain.  There is nothing wrong with my leg!  I have had it tested.  It is fine.

For me, that is the most difficult part to accept.  I can handle my foot hurting because it was run over by a car or I dropped something heavy on it.  I cannot wrap my mind around my body feeling this way just ‘because’.  The nerves are upset today so they are in rebellion.  Well, that’s just great, we couldn’t save this for some other time when I was less busy?  I have no time for this nonsense.  Yet here I am, dealing with this nonsense.

How many people out there are dealing with this nonsense?  Nerves getting on your nerves?  ME TOO!!  Random muscle spasms?  ME TOO!!  One leg in pain and the other asleep?  ME!  TOO!!

Where do we go for respite?  I know not!  What I do know is that eventually, I will have some kind of answer as to what is happening in my body.  I have hope when I get answers that it will help others to get answers also.  We have to be the lights in the darkness because right now, medical science has so much to learn about the brain and we are the key.  We have to be willing to endure pain and tests and waiting and tests and surgery and tests and even tests!  I chose to disregard pain management because I don’t want a bandage.  I want my wound tended to and healed.  If that means it hurts, well, there’s always sleep.

I don’t expect everyone to make the choices I make because we each have to do what is right for our own lives.  If I were able to work, maybe my pain management choice would be different.  I did try it. Facet shots in C3 and C4 and I remember the sound of my tears hitting the floor as they moved from one area to the next.  I was strapped face down and there was a hole my head rested in where I could see all the feet and the floor.  I had to cry in silence so nothing would be damaged in the process.  So it isn’t like I haven’t tried.  Since opiates do nothing for my pain and they haven’t given me any type  of actual diagnosis relating to my nerves, I am going to just wait until we figure out the problem.

The nerves function from the neck down.  Anything I feel is originating in my brain.  See, that is where the hard part lies.  We understand the heart and how it is built and functions.  We understand muscles and bones and lungs, but we are severely lacking when it comes to knowledge of the very organ that holds our knowledge.  Somehow, this jelly-like pink blob full of wrinkles has control over not only the functions of the body, but also forms the very thoughts and ideas I am using to write about it.

We know that it can be injured and people can survive.  We know that injury to it can lead to change in personality.  We know that some people are just born with brains that seem off or different from the majority either in a good or bad way, depending on the difference.

We don’t know the actual mechanism by which it functions and malfunctions, though.  We have our theories.  Most neuro medications are based on the theory of how certain receptors work.  Then when something major goes wrong, we aren’t sure why, but that is what starts giving us insight.  So, I want them to find out all they can from my brain and add it to the existing information so that one day a cure for Chiari Malformation can be found.  Or a better treatment plan for ANY brain issues.

If your brain is being a jerk, know that I understand.  Don’t hate on yourself because of your brain, even if you really want to because your brain is special and the right doctor will help you understand why and how to help.  It takes time (I was decompressed THREE YEARS AGO!!) and that time may not be fun or easy, but you can help be the key that unlocks the mysteries of the brain.

Still, if you are able, take time to rest and sleep.  Journal and talk to someone who can listen.  Don’t let the pain overtake your beauty.  Let your hurt out and allow others to help you bear your burden.  Our loved ones often don’t know what to do, so it is up to us to inform them that we just need someone to listen and possibly make dinner tonight.  Also, LOOK FOR JOY in things.  Flowers, birds, puppies, trust me, this helps balance out negativity.  We get to choose how we handle even the worst of days.

Choose wisely.

Monsoon Monkey

Recently I have been experiencing a heavy emotional load and with monsoon season upon up, I have been plagued with headaches and nausea.  I would like to remind you at this point that when I have a headache, a LOT of body systems do not function properly.  So, it has been uncomfortable all over.

I have pushed against this by going to the gym almost daily and doing light cardio and weights daily for about 2 weeks.  It has not helped my energy levels but I know it takes time to work things out, so I am really just focusing on consistency right now and expecting to reap rewards later.

Many people don’t understand the life of someone who deals with chronic pain or illness.  Often times it isn’t that I don’t want to do anything, it is that I have a more difficult time getting ready to go out, so it becomes a hassle.  How?  I will tell you about going to church last Sunday.

It is monsoon season (as mentioned above) and I have basically had at least one episode of headache pain a day and constant nausea.  So, I woke up around 0630 and drank some water and took meds.  I felt sick, but my headache was manageable so I got in the shower, dried off, put on foundation garments and prepped my face for makeup.  At this point, I am warm.  I plug up the curling iron, start separating and sectioning off my hair.  After curling half of my head, I was sweating and getting dizzy.  So I sat in front of the fan to cool down. When I felt well again, I put on foundation, blush, and bronzer.  Then I curled the top half of my head.  I immediately had to sit in front of the fan as I had begun sweating again and it would have made my hair frizzy (it did anyway).

I grabbed my tights, put them on and had to take a break.  I put on my dress, jewelry, lipstick and shoes.  I drank a glass of water and had some cold ginger ale because the nausea was just amazingly strong.  I put my purse in order, got the car keys and had to run to the bathroom, but I couldn’t pee because I have a headache, so, I washed my hands, walked out the door.  Halfway to the truck, I vomited in the yard unexpectedly.  I came back in and brushed my teeth.  I left and went to church.

This took about three hours judging from my text messages.  That is longer than I actually spent at church.  Then, I had to come home and put on comfy clothes, washed my face, fixed a food, and then rested because I was worn out.

This. Is. My. Life.

Of course every day isn’t this involved.  Sometimes I have the dubious pleasure of going grocery shopping with a headache.  Do I have a list? Yes!  Did I bring the list? Yes! Am I going to get everything on the list? NO! Why? I forgot the list is in my pocket so I am not even sure why I came to the store in the first place!  Now I will just spend an hour walking back and forth until I fill my basket with things that “feel” right.  Then, when I change clothes I will find the list and see how big of a disappointment that trip was!  Delightfully frustrating.

Why delightful?  Honestly, it has a sitcom-ness about it and it helps to be able to find some humor in these situations.  The perceived failures in my life are enough to break my spirit, but I keep going so I can get stronger.  I draw my comics because my life often feels unreal; like these things only happen in the movies or on TV.  I find a lot of hope in my laughter because if I can laugh at my pain then it can’t take over me.  I have my bad days, but I have the light of hope in my heart.

This seems to be one of the biggest misunderstandings about those who live with a chronic or painful condition: People assuming that if I can smile, laugh, or have a good time that I can’t possibly be experiencing what I say I am.  So, just because I have a headache I can’t smile now?  Just because I feel sick I can’t appreciate something funny or beautiful?

That’s whack, yo!

So, I have a quick mental exercise for people who have never dealt with a chronic condition.  Imagine your least healthy day. It might be a bad flu, when you broke a bone, had a surgery, or whatever.  Now, imagine feeling like that 24 hours a day for at least 4 days every week for the rest of your life.  The thing is, people will imagine all sorts of different things and disabilities/illnesses are just as diverse!  So, now you might be thinking of that time you had H. pylori, but if you were always experiencing that it would mimic illnesses of the gastrointestinal system.  If you dislocated a joint, imagine having EDS and doing it all the time.

Most people cannot comprehend how every facet of life is affected when you are in pain or limited physically because they don’t have to plan around their body’s extra needs.  Four years ago, I was probably the most ignorant person out there.  Now, I am constantly apologizing for being late, underprepared, or just missing something.  So, I encourage you to speak to someone about how illness really affects them.  Besides, they will probably be glad to have someone to listen to them.

If you are dealing with the feelings of someone who doesn’t understand what you are going through, I encourage you to educate them.  If they don’t listen, I encourage you to walk away.  We do not HAVE to justify our needs to ignorant people nor should we waste our precious spoons worrying about what someone else thinks.  Find what works best for you and stick with it unless you find something that works better.

I hope that one day nobody has to suffer with Chiari Malformation and the slew of wild symptoms it can bring.  Until then, I hope to help people feel more comfortable advocating for their healthcare and to be treated right in public spaces.  Chiari is not really on the public’s radar and barely on the medical field’s radar, so one by one, we have to start making it visible and help people understand what we go through.  Not for sympathy, but because it is probably under-diagnosed but still quite prevalent in the population.

Also, if you are dealing with weather and that is aggravating your symptoms, don’t feel bad about rescheduling appointments or lightening your workload for the day.  It’s never worth a bad flare-up because you will lose more time from that than just easing up.  It can be difficult to accept the new normal but you can do it.  I have faith in you!

The Monkey Sleeps Tonight…And All Day

When I woke up I felt it.  Brewing in the back of my head.  The pain that breaks grown men.  So, I purposely didn’t do much for the morning.  I think by 9 I was done and had to take another nap.  Woke up around 2, I think.  I remember talking to my daughter and apologizing.  we were supposed to do stuff.

Nothing makes you feel like a bad mom like letting your kid down, AGAIN, because your body can’t do anything.  I didn’t even make more than 900 steps all day.  She’s a trooper, but it still isn’t fair to her.  It is unfair to me.  I wasn’t really into motherhood, but when I became a mom I tried to do best by my girl.

My family left around 4 for church and I was still just hanging around.  I made a necessary phone call.  I taped up a box for shipping.  I put my clothes in the wash for my staycation.  I made it maybe until 6.

It is now past 1am, I woke up about half an hour ago.  My whole family (except nightowl teen) is sleeping.  I didn’t get to hang out with the family at church or our nighttime meetings.  I didn’t go for a walk even though that is so important to me.  I just slept.

You know what?

That must be what my body needed, so I don’t really feel that bad, I just missed out on family time.  It’s ok!  I already did my precheck-in and I will be in a beautiful Las Vegas Paradise in about 13 hours.  That’s cool.  I’ll sleep there too!

Monkey Countdown: T minus 6 Days!

I know, I didn’t write anything yesterday.  My head was (and still is) hurting and so I slept, and slept, and then ate and went back to sleep.  I was trying desperately to get up and write, but I ended up just sleeping and not being much use to anyone.  Which is fine.  Sometimes, I have to make sure I am taken care of and that means a 13 hour nap.

Today, I slept a lot on purpose.  I have a headache but I committed to baking shortbread cookies.  I should have committed to buying them, but I will be honest, I prefer mine.  They are so buttery and delicious.  They will crumble if you don’t treat them right.  They are amazing.  I am a little intimidated because I haven’t made them since my hands and body have gotten all weird, but I know my way around the kitchen.

Actually, all that is standing between me and starting the cookies is finishing this post and publishing it!  So, how was my anxiety today?  Well, I feel like I have some type of feeling about it that I can’t pinpoint.  If I had to guess what it was I would say uncertainty.  I think this one day represents the culmination of a lot of time and many different events and I feel almost like I will be emotional going into this building that when it was built repulsed me.  I said I would NEVER go there.  Now look at me, dying to get in there.  Still not sure of how everything is going to go, hoping that they can help me live a productive life again.

I am still very excited about going, I just have the feeling that I may experience more emotions than I normally do at a doctor’s office and I don’t know that I feel great about that.  I think I have a generally calm demeanor at the doctor, but I have gone through a lot physically, mentally, and emotionally in the past two years and I can see myself having a hard time containing my emotions if I hear something I don’t like or if I disagree with something.

LUCKILY, I will have my family with me to help keep me calm and rational and to help me explain myself when I begin to become frustrated.  They are pros at it now, they diffuse me like bomb experts.  I just want everything to go well and to have a good relationship with my main doctor there so that we can work toward a viable treatment plan together.  That is the most important thing.  If I get along with the doctor, everything else will be a little easier even if it seems negative.

So, those are my daily anxieties about my upcoming visit.  Not terrible, but trying to make sure this week doesn’t get out of control.  For now, I will go soothe myself with the baking of many cookies full of buttery goodness!  Once they are ready to be packed for tomorrow, I will probably be tired enough to just go right to sleep!

The Bitter, Petty, Mean Monkey

I am not happy. It is not a word that people would use to describe me. It certainly is not one I would use to describe myself. I used to think I was happy, but my family pointed out to me that I was (and still am) bitter, petty, mean, pessimistic, and choosing to not be happy. Apparently I was just blissfully ignorant of who I was. Looking back, they are right. I have not experienced real, lasting happiness in years. I do not look for happiness. It does not feed you, or warm you, or shelter you. I look for survival.

See, it goes back to the days when I was still being molded as a member of society when I was told that nothing I did was good enough, no man would ever love me because I am not good enough, that I am just not enough. Sure, in my other ear I had my mother who made sure to say I looked fine, that I did fine, that it was adequate. I couldn’t impress anyone. He did it because he liked mind games. She did it because she didn’t want us to get used to heaps of praise. What I got out of it was that I will never excel and if I do, no one will be proud of it anyway. Eventually, I couldn’t even impress myself. Here I am all these years later with 99 medical problems, no house, car, job, social life, or money and guess who is the least impressed with it?

I no longer try to impress people. What does it matter if I do? Their astonishment at me or the things I can do doesn’t do anything for me. At night I still go to a home that is not mine, I look at the same broken body in the mirror, I take the same medications, and I go to sleep and hope that I can at least have a decent dream so I can live normally for at least a few of the 24 hours in a day. I have come to crave sleep as an escape. In my dreams I don’t hurt, I have a job, I am a functioning member of society. I can go horseback riding, I can dive, I can go on roller-coasters. I smile so much in my dreams. Then, the morning comes and the sun rises and opens my eyes to my reality. I hear the air from my CPAP, I feel the aches in my body, I try to remember what day it is without looking at the phone. I come back to a reality that has worn me down so far that I just don’t want to go any further. If I had the physical ability, I would just run away to the mountains and be alone.

This is not the case for my family, though. They want me to be happy. Happy. HAPPY! So much so that they don’t even care if that is what I want. I don’t want to be here. I don’t want to be a grown woman living with my parents asking someone to please buy me toothpaste. That is degrading (in my opinion). That doesn’t inspire happiness in me. Am I thankful that they do it? Of course, I am sure they are too since they don’t have to smell morning breath all day. Still, being put back into the position of a child has inspired a self-loathing that even I didn’t think was possible.

To add that extra layer of discomfort, I have my religious beliefs and I have to ask myself constantly, “how far outside of the Bible are you with these feelings because you are doing a great job suffering, but it seems to be breaking you.”  I don’t even pray for myself much anymore. I don’t even care, I just ask to be kept busy and that my time here isn’t long. So, I keep myself busy with ministry, I help other people. Then I often watch as they flourish and I develop another health problem. I try not to question God, that usually just leads to more problems, so like an ox, I just do what I have to do, eat, and go to sleep. Then, wake up to the same reality again, and again, and again.

I don’t know why I feel I cannot choose happiness. I feel like it isn’t a choice. Sometimes you are happy, sometimes you are not. I should be more grateful, so I guess thank my parents even more than I do now. They do so much for me. At what point does it become groveling? Does that even matter? If I had the ability, I would just leave. I would disappear. I love my family, but there is no feeling like knowing you are radiating unhappiness and they are suffering for it. I am the broken glass that they cut their feet on everyday. My mother more than anyone makes sure that I understand how unhappy and venomous I am. I am a plague upon her house, but one that she can’t bear to part with. She doesn’t want me as I am, but can’t accept that I may not change. Unlike her, I can walk away from it all. I am so used to being hurt and empty, that it would just be another little blip on my radar. I simply don’t have the means. That is very anxiety producing. I need to at least pretend to be happy for her sake, but I will simply resent her for it. I can probably pull it off for a while, but I don’t have the tolerance for stuffing my emotions like I used to. I don’t want to explode on her or anyone else. I just want to get away. Just, gone. I don’t even have anywhere to go. If I did, I wouldn’t have the means to survive. I am trapped in a life I hate, in a body I hate. This does not inspire happiness.

Honestly, I don’t know what the core problem is with me. It could just be that I am a terrible person. It could be that there was an emotional component that did not develop all of the way. It could be that I am super immature and whiny and I should be thankful because other people are going through worse things than I am. I go to therapy to work through this, but it is not fast enough for my family. I am used to being a disappointment. A well loved disappointment. Please, don’t take any of this the wrong way. My family is very frank, we do not beat around the bush, and I have no argument with any of their assessments of me except one. I am bitter, mean, pessimistic, and unhappy, but I don’t feel like I choose to be unhappy. I feel like that is just how I am. I have become fine with it, I don’t understand why they can’t be.

This is a very rough journey for my family and I chose to expose this because so often people are ashamed of what they are going through. I have had a traumatic brain injury. I have a patch on my dura. I have chronic pain and nausea. I fall. I miss my old life. I imagine many people who have gone from able-bodied to chronically ill experience a range of overwhelming and often negative emotions. If you see yourself in this situation, experiencing similar feelings, PLEASE know that it is NORMAL but that therapy can really help sort out and deescalate these emotions so that you are able to eventually achieve your new normal. Understand that the process does take time, and it can be emotionally painful, but it makes such a huge difference when you are trying to get through a situation that is less than ideal.

Find your main support group and also speak to your PCP about counselling so that you can have a safe place to vent and relieve your frustrations and look for answers to your issues.  There is no shame in seeking professional help. As a Christian, I can tell you that I go to a PhD level psychologist because I have not just issues, I have subscriptions. I have a lot I need to work through. So, please don’t give up. Take a break if you have to, but then get back on the track and keep running. Even if you don’t find “happiness” you will likely find purpose, and that will carry you further and help more people.

The Chiari Sea

 

Sleepless Monkey…

Last night I did not sleep.  I tried to go to sleep.  Then I did yoga and tried again.  I read and studied.  I played Lumosity.  I read some more.  I did more yoga.  Yet here I am, deliriously tired (so there may be some mistakes).

Insomnia is not something that I have had much experience with until the past year or so.  I have always needed to sleep and been able to get the job done.  Now, at least once a week, it seems, I find myself getting angry at the clock and my own malfunctioning body.

I am so tired, yet apparently not enough so to go to sleep.

There are other people who are out there going through the same thing I am.  Maybe it is due to a different cause, but I assume it is just as frustrating.  The past two years of my life have taught me so much about the hidden suffering of people.  People I know.  People I care about.  People I don’t know.  I feel worse for others than I do for myself since I don’t have to work (my family is carrying my financial burden) and I have help taking care of every aspect of my life.  I know how much of a blessing that is.

In the end, that is the only thing that gets me through the rough nights and tough days; knowing that I am blessed beyond measure.  Hopefully, I will continue to remind myself that I really have nothing to complain about and that there are other people out there who have it worse than me without the support I enjoy.

The Planning Monkey

I am a control freak.  I like knowing what to expect.  I like a good plan.  I hate the unexpected.  I don’t like surprise parties or pranks.  I have ordered the same sandwich for the past 16 years.  I have always known what I needed to do, how it needed to be done, and where to do it.  My brain held dates, locations, passwords, recipes, pins, and everything else.

Now, I have to check the day of the week at least four times a day.

First I began to rely more heavily on the calendar function on my phone.  I have a Samsung Galaxy Note 4 and I used the default calendar and it did what I needed.  As my memory got worse, I downloaded Google Calendar and that changed the game for me.  It allowed me to color code and it was just more intuitive for me.

I have to be reminded every day to do the everyday stuff I do every day!

 

If your memory isn’t keeping up, I recommend finding a calendar for your phone that really fits your lifestyle.  I like the ability to color coordinate events and it syncs seamlessly with the rest of my Google apps.

But even this robust calendar couldn’t keep up with my inability to remember.  So, I started looking into other methods to keep a schedule.  I found an old Day Timer book and I just needed to get the paper for it.  The set I needed was about $50.  Since I am not working, that is way outside of my price range until my finances get settled.

Went to Michael’s and after a few minutes of browsing I found what I needed.

It spoke to me from the endcap. 

This is a Happy Planner.  I had seen someone with one before and asked her about it, but I had forgotten about it already.  I happened to be there during a one day sale on Mother’s Day.  It normally cost around $30, but I got 50% off because of the holiday.  So, I got it.

And I love it.

It is a whole system, so I can get the parts that work for my life and leave the rest of them alone.

All the things!

These are most of the things that I got to customize my planner.  It isn’t much.  I always have a coupon that gives at least 40% off,  it brightens my day.

Today, I finally got the addition I have been wanting.  It is for household stuff like cleaning and budget.  I never needed anything to direct my life.  My previous planner was just because I wanted to look professional, I didn’t actually need it.  It just held my stamps.  Now, I need my planner to remind me to clean the bathroom.  Life, amiright?

Ok, so I can’t remember the last time I did laundry.  Now, the planner does that.

I am not trying to sell the products I use.  I am just trying to explain how I cope with scheduling.  There are so many products out there.  Go look at them.  Ask people what they use.  I may never have the memory that I once had, but that doesn’t mean that I can’t try to keep a schedule that works for my situation.

I feel like this planner (along with the calendar) allows me to feel like I am in control of my schedule.  I like control

Monkeyzzzzzz or nah?

Sleep
Where are you now?
I have been waiting
You haven’t come.
I want you so badly
Even if only for a while. 
I need you now.
Here.
With me.
Yet, you hearken not
To my lonely cry.
Has my headache
Chased you away?
I love you.
Come back soon.
Sleep.

So, if I were a poet, this is what I would be writing about.  Am I sleepy? Of course I am.  But my body is not cooperating with me, so I am watching another sunrise.  Waiting for exhaustion to take the wheel.  I know that will only get me a few hours, but the headache rarely haunts my dreams so it is welcome.

Before this got so bad I thrived on three to five hours of sleep a night.  I worked for a shipping company, took 8 classes as a music major, taught art class once a week, sang in several groups.  Now, nothing like that.  I spend almost every day at my sister’s house where it is quiet and dark.  Most days I make it from the sofa to the dining room chair and back to the sofa.  On days when I feel good enough to drive I go to the store and try to run some errands. 

Trying to get sleep is difficult though.  Often my arm goes numb and that wakes me up.  Technically I do sleep.  Sometimes 18 hours a day, but there is no quality in the sleep.  My neck hurts, back hurts.  Often when I wake up I am in pain and stiff in the shoulder/neck/head area. 

Right this minute, I am soooooo sleepy.  My head feels like it weighs 30 pounds.  I have to lean my head on the chair to relieve the pressure on my neck.  The pressure goes away, but the pain is always there. 

Hopefully. I will be able to sleep for a few hours and get that good sleep. 

Who knows? 

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