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.

The Monkey And The Ritual

Anytime I get a bad headache I have a ritual that I go through, mostly because I am hoping that there is some other cause to the headache.  The first thing I do is I make sure I have been taking my meds.  Abruptly starting or stopping some medications can cause you to have a headache.  This has NEVER been the cause.

The next logical step is coffee.  There aren’t many days in my life spent without a cup of joe, so sometimes I have to make sure that not only have I had my coffee, I have had enough of it to power a small coastal city for a week.  Too much coffee can not be had without also hydrating constantly with water.  Coffee will do terrible things to you, including dehydrate you, and dehydration can cause a nasty headache!!  So throughout the day I tend to drink water with and between my other drinks.  I keep it with me when I sleep.  I drink a glass before bed.  I am also very fond of sparkling water.

It has never been coffee (I have never really been without it) and only dehydration the first summer after my decompression.  I learned real quick that a little extra is ok and always have a bottle in your purse.

When dehydration is not the problem either, I turn my sights to my tummy.  Have I eaten in the past four to six hours?  Was it substantial?  Will I feel better after a piece of cheese?  I get hangry and hunger will give me a headache, but it is usually a very specific type of headache that happens in the front as opposed to the back of my head.  Still, I will eat a sandwich if I think it may help!

None of those things?  Is it that time of the month?  Even though I am on Depo, I still go through hormone changes and sometimes that includes a headache.  However, it is usually accompanied by hating everyone, thinking everything is stupid, wanting to set the world on fire, and a general malaise.

Still no?  Well, probably working with an occipital headache that can be affected by the weather, how I sleep, and I honestly don’t even know what else.  Sometimes I can be having a perfectly normal day and then BAM!  I feel like I have been hit in the head with a steel bat and things stop working well.  I can’t hear the same.  I can’t keep my balance, I have trouble writing or speaking.  The headache has come and brought it’s terrible friends with it.

I hope that I will get an answer at the Cleveland Clinic.  I have waited so long to see these doctors and maybe they can tell me where the headaches are coming from.

The Monkey And The Process

There are times when I look back to the beginning of this blog and I can’t even relate to the girl (myself) who wrote this stuff.  There was a time when I thought that I would spend a little bit of time in recovery and then jump back into my old life and live like sleep was a myth.  Now, I see that I am still at the beginning of a very long road and that recovery might last years.  It may never end.  I might spend the rest of my life becoming the new me.

So, I thought that I would share a few tips I have learned about getting through the frustration of life after a major unexpected change.

1. Get a support system!!  I try to say this as much as possible because it is imperative during the extremely difficult times of your life.  My family and friends have had to put up with everything from childish rants to uncontrolled vomiting to helping me go to the bathroom.  NOT ONE TIME have they made me feel like a burden or have they made me feel ashamed or guilty.  Brain surgery put me in a position where I could not do much for myself for a long time.  I can’t imagine what it would have been like to go through that alone or with someone who didn’t really care about me.
2. Realize that you may not be able to do everything that you were once able to do, and that does not make you a bad person.  I struggle with this and I talk about it a lot in therapy, so please don’t think I have this all together.  Slowly, I am coming to understand that even when I was at my “best” I was limited by my intelligence, fitness, and will.  Nothing has really changed except the level of those things.  My accomplishments are still important and they still matter even if they don’t meet my former standards.  I have no control over how my body functions right now.  I only have the option to use it in the way I can and make it stronger than it is now.
3. If you are looking for medical answers understand that it might take a while.  In my case, I have to wait for referrals and appointments and test results and followups.  for each issue, it could take one to three months to get everything done so we can see if this area is problematic.  I am not saying that it is easy or that it isn’t frustrating, but it takes time.  There are some insurance plans that allow for much freer access to healthcare and the process isn’t as long, but for many of us, we have to deal with symptoms and discomfort until we find the doctor who can tell us what the problem is and how we can deal with it.  This right here is why it is SO IMPORTANT to have a good support system, because it is hard to go through this for an extended period of time.
4. Find a mental health professional, ASAP!  Not because you are crazy, but because illness can bring up unexpected feelings that your family and support system may not always be able to deal with.  As wonderful and loving as my family is, I see a therapist at least once a week because I need someone who I can talk to without laying extra emotional baggage on my family.  I talk to my therapist about my “spinning wheel” thoughts, or the thoughts that I can’t seem to make sense of, but they keep being at the forefront of my mind like; How am I supposed to take care of my daughter if I can’t read a book?  It is time to end the stigma of mental heath-care in the United States.  There is something wrong with knowing something is not right and refusing to get the help you need.
5. Find something to do that gives you joy.  Not just something you enjoy doing or participating in, but find something that brings purpose to your life.  If you knit, knit blankets for preemies.  If you like reading, go read to people in hospice.  While it may seem like a bummer, I help plan and carry out funerals (with a team, of course).  I remember what it is like to be stuck in the shock of losing a loved one, so I help return normalcy.  The family is allowed to focus on the business of mourning and spending time with one another whole we handle the details and work.  It is amazing how much stress that takes off of the family.  Not only does it give me something to do with my time that is useful, I am reminded that compassion is one of the most important forms of emotional currency.  Over my lifetime, and especially the last two years, people have invested their love and compassion into me, and now I am able to give it back.  I AM NOT SAYING THIS WILL MAKE YOUR PAINS GO AWAY OR MAGICALLY FIX YOUR LIFE!!  I am just saying that some days are easier if you focus on the needs of other people.
6. Be honest with yourself.  There are days that stink.  I do not try to fool myself into thinking that it is all in my head or that a positive attitude will make my head feel better.  Some days I don’t accomplish anything.  Some days I am not very nice.  Some days I wants to set everything on fire and just watch it all burn so everyone else can be as disappointed with life as I am.  I eat ice cream or peanut-butter sandwiches and I record it into my phone with a smirk.  I don’t kid myself.  Sometimes, it is a struggle.

Of course, everyone’s situation is different and we all have to look and see what works best for each of us.  These are just the methods I use to help get me through this thing called life.  It’s very difficult for some of us to get through any sort of life change.  I am working to learn even better ways of coping and moving forward so that I can deal with my life situations in healthy ways.  I hope the same for everyone else.