A Plan Is a Start

This is when I become a model…

I was sitting in a training session yesterday, listening to the speaker and looking around the room. I noticed that the people were wearing clothing with very intense colors. I mentally scratched my head, and then realized that all of my symptoms for the week began to make sense.

It’s one of those moments when you realize it is really going to suck. There’s no turning back, and it’s probably going to get worse before it gets better.  Fortunately, I have been here before and I know what it is like.  I know what it meant to see those colors and notice those sensations.

Two weeks prior, I had intense nausea—the kind of nausea where I wasn’t even able to move my head without fear of losing my lunch.  I remember one of the days I went from feeling a little off to quickly looking like death. One of my coworkers drove home behind me to make sure I even made it home a mile down the road.  I was miserable, and there was something terribly wrong. Even when I started feeling better the next day, I wasn’t completely better.  My sleep started getting jumbled and I began having intense pain through my legs as I slept.  I was tired and achy in the daytime, but not enough to really think something was wrong.

This week, I hadn’t slept.  Ok, that might be exaggerating. Over four days, I had probably nine hours of good sleep. I had become absolutely miserable.  I was feeling dizzy and felt a lot of pain during my sleep.  I was also hyper-sensitive to sounds, smells and touch. Bumping into things hurt, textures and clothing bothered me, and I noticed there was quite a bit of tension in my jaw.

I looked back over these paragraphs and realize there is quite a bit of whining going on.  I need for people to understand I am a person that walked on a broken foot for five days before going to the doctor, and I have dealt with pain often without getting assistance.  I have realized now that this is ridiculous.  We have a culture where pain is glorified and we are supposed to be miserable.  I am not always the best example (mostly because I don’t make time for myself), but I would like to change this.  In fact, the rest of this post will be about the brain, how it works, and self-advocacy. I know it’s a break from the project, but it’s part of my life and my hope is that this story will reach people that don’t know about people with different needs.

So, here goes:

 Fibrofog: My brain was already a bit jumbled from fibromyalgia before the accident a few years ago. Fibromyalgia/chronic fatigue causes something called fibrofog.  For those of you out there with children, think about the first few months with a new baby—massive sleep deprivation, where there is little ability to have a clear thought.  This is exactly how it feels to have fibrofog.  To people without children, I liken it to what it is like in college when you cram for exams and stay up for days on end. After a few days, you lose the ability to function. 

Energy: Loss of energy can be difficult if you have your cognitive wits about you, because your mind still tells you all the things you NEED to be doing.  I am a goal-oriented person by nature, so when I am in the midst of a flare, I hate taking it easy and not doing everything I am supposed to.  It makes me miserable to have zero energy. I want to be active and participate.  I want to work. I want to have a family. I want to get out and have a life.  I don’t know of a person that enjoys a life on a couch watching television.

Pain: There is constant pain, and it comes from things that shouldn’t cause pain. An excellent example happened this week.  We have had a drought for the past few weeks, as well as intense heat.  I went to run errands after training this week, and we happened to have some fairly steady rain. I went without an umbrella, and the raindrops actually caused burning pain on my skin as they hit my arms. Touch that is inconsistent and is not deep pressure is painful. During a flare I do not like to be hugged if it isn’t deep.  I am not a fan of someone just patting my arm, and I become edgy if people bump into me.  I am not a mean person by any means—my body just interprets these signals as pain.  Until they can figure out a solution to these crossed wires, all I can do is apologize.

So, all of these issues (and many more, really) were present before I had the accident that reset my world.  The accident caused exponentially more pain and a lot of memory and organizational issues.  After I was about to move about from the accident, I created a notebook to organize information. It made sense to get all of my needs in one place.

I realized now what this notebook is: a self-advocacy notebook.  And now, I realize that I need one. I teach my students that they will succeed if they identify their needs and tell people what they need to help them succeed.  I guess the best model I can be for them is to model how to do such a task.  So, I am going to sit down and identify what it takes for me to function best and what I need from the people around me.  I am fortunate to have a wonderful support network.  I have a great group of people that work best when they are educated on how they can help me. 

My irritability stems from me being tired and in pain, and when my family knows that, they will know how to help me. They will also know it is temporary and it is not their fault. Communication is important, and another vital need of this notebook.

This reminds me of the emergency behavior plans we have for students with behavior problems. It is a Plan B of sorts for students that often require de-escalation, isolation or restraint. I remember reading a student that had a “mad and sad plan,” and wishing I had one of those.  We all probably really need one of those…

So, the notebook is in its preliminary form, and will develop over the next week. It will grow as I become stronger in what I want. I know there is a lot I can expect from myself, because I carried a lot by myself for so long. I also know that I function best when I don’t carry everything on my back (which keeps me from having flares). So, the more I share the weight, the healthier I will stay!

I am hoping that this intervention came in time.  I think I am finally getting smart enough to realize the flares before they get to be too strong.  I remember the last one—I was stubborn enough to wait a month to see the doctor.  I finally sat in her office in tears. I told her I hadn’t slept in over a month, and I needed my sanity. I was in constant pain, and I was losing my mind. Fibromyalgia and chronic fatigue will make your body feel like it is failing you. In fact, your body is short circuiting, and is in effect failing you… I felt like I had the flu for the past few months, even though I had to continue working full-time to maintain a living.

I will not go there again.  I cannot do that again.

A plan is a start.

Pain, Pain, Go Away...

First of all, I realize that a lot of my recent posts don't mention the ongoing project of 15 Before 30. I am going to create another post later tonight that will provide an update on the project.

Two weeks ago I had a leg surgery. It was a relatively simple procedure, and I was told I would be back to my old self in a couple of days.  This same procedure was supposed to be the start of a two-part surgery that would wrap up my 2.5 years of pain.  This was supposed to be it! I would be free!

For those of you that have known me for a while, you know I have lived with pain. Well, for some of you that know me, you still may have never heard about it. I was miserable, but I tried not to complain too much.  I remember visiting a specialist, and after him asking me the same question for the thousandth time: "Rate your pain on a scale of 1 to 10." I screamed "14!!!!"

Pain can do terrible things to your body.  It makes you mentally miserable, it limits your daily activities, and it cuts you off from your social circles.  It's even worse when the wounds are healed, and the pain lingers.  There isn't a cast or a bandage for people to see.  They assume you made a miraculous comeback, and nothing can stop you!  Pain doesn't work that way for me.  I am fearful it will always be my companion.

When I started running, I knew a little trick.  With fibromyalgia and chronic pain, you can sometimes overwork your body, and it short circuits the pain response.  I really had that going for me for a few months, and I was feeling better than I had in years!  No medications or anything--just intense exercise and eating right.

Then the leg issues cropped up. Surgery #1, like I said, should have been a couple of days of recovery.  Two weeks later, I still have terrible pain in the leg.  I walked, I wrapped, I propped, I did everything they told me to do!  I have severe almost-painful numbness on my lower leg, and it feels like all the nerves have been fried. A blanket on top of my leg at night causes intense pain. Great...

Wednesday was surgery #2. It was supposed to be very similar to surgery #1, and the recovery time should have been short as well.  I knew better this time, and realized that the recovery might change from a few days to two weeks.  After a terribly painful procedure (I was only partially sedated), I was told it would be a six month recovery.

Six months.

Six months?!?

There were a lot of emotions that ran through me on Wednesday, as well as a lot of Valium.  I knew that some of the emotions were exaggerated from the medications, but others were real.  I had finally gotten my life and my body back together.  I survived the attack and recovery, I survived a divorce, relocation, and new job, and I had been doing well pushing myself physically.  Now, it was like a blow to the stomach.  Why don't they just chop off my leg now?

Ok, that was too dramatic.  But the reality was, I didn't know if I would ever get back to where I was, if I would ever heal and be the person I wanted to be, and if I would get to have the life I have been dreaming about and planning.

There was a lot of tears.

I realized that I have no control over some things that happen in my life, but I can choose how I react.  I am doing exactly what the doctor has told me, and will be taking it very easy.  This is going to be hard when I am used to speeding through life at 100 miles an hour.

I am going to reevaluate a few things.  There was a selfish response on Wednesday, and I'm not really proud that it was one of my first thoughts:

I thought about the recovery, and the unknown.  And I thought about relationships.  Who would sign up to deal with these damaged goods?  I was finally to the point where I could entertain the idea of a long-term relationship again.  Why would someone knowingly get involved with me when there was a lot going on.  And I feel it's only fair that people would know what they are getting into.  I am being dramatic again, but I feel like a leper of sorts.

So, this post isn't positive and upbeat.  We all have our rough times in life.  This has been my week.  Really, this has been a flashback of the past three years for me.  The three years I thought I could finally put behind me.

But there is something positive that has come of it.

Events like this do weed out the people that are not invested.  They tell me who wants to stick around, and who can't handle the trouble.  We've seen it in the past already.  So I will take this as an experience that will hopefully show me something new and different about myself, and even those around me.

I have contemplated adapting my 10K goal, but I don't want to change plans yet. It's like giving up. I am not ready for that yet...

And I have seven more months before my birthday. A lot can happen in seven months...

On Pain...

"Given the choice between experiencing pain and nothing, I would choose pain."

                                                                                                                      ~William Faulkner

I have had to think long and hard about this post.  Not because I don't have anything to write on the topic of pain, but because I have always been taught to suck it up and walk it off.  I am an emotionally-intense person, but one thing I was never supposed to do is let someone see me hurting. I once walked on a broken foot (broken in seven different places) for a week before seeing the doctor.

As you can imagine, the experience of the past three years has been eye-opening.  I dealt with more physical and emotional pain than at times I could bear.  People would tell me that it was all just making me stronger.  I wanted to punch them in their faces.

Pain is an interesting sensation.  It is always a warning--that something is causing us distress or torture.  I remember watching an episode of the BBC Sherlock series, and remarking at the limp that Dr. Watson produced.  It all came from psychosomatic feelings he hadn't dealt with.  I thought that it was foolish, but part of me knows that such a thing can be very real.  Over the past few years, I attributed much of my physical pain to an emotional wound that needed time to heal.

I know being physically attacked is never a field day.  Being emotionally injured during that time was a second blow.  Add to that the vulnerability and lack of security that goes with not working, and I was a mess.  I remember at my worst I was on Percocet 10's four times a day, with tramadol buffers.  I was on valium, muscle relaxers, and tons of seizure meds.  I honestly don't remember much of a year of my life.  I wonder now if I would have survived if I was really aware of all that was happening.  I remember talking to a therapist that told me the mind only lets you deal with so much of a trauma or memory at a time.  I think the medicine and my mind did a good job of keeping me from losing my sanity.

In summer of 2011, all of the medicines stopped.  I decided that I was going to overcome everything now that I was starting a new teaching job.  My mobility had improved significantly, and I knew my emotional health was looking great.  I thought I could take on the world!!

What I forgot was that I would have pain the rest of my life.  It was a reality I had to accept.  I could pretend that I was a magical creature that found a cure, but that would be deceiving myself.  It always drives me crazy when parents deny their child has a disability.  Now I understand it--I was trying to mourn the fact that I would not have that "normal" life everyone else had.  I was shortchanged, and I tried to prove something to myself by going cold turkey.

By September, I can remember showing up to my doctor in misery.  I hadn't slept in weeks, and I honestly could barely move.  The hardest part about the pain is that no one could see it.  I didn't have a broken leg or a black eye.  And I pretended like everything was normal so no one at my new job would learn my secrets.

The doctor wondered why on earth I had gone off the medications.  I told her I was out to prove something, and had failed miserably.  So, we started back on some light stuff, knowing that was going to make me a functioning human being.  I liked the sound of "functioning."

I got back into running, and have really enjoyed my experiences.  With the help of my trainer, Jesse, I have been able to make incredible progress!  I will not lie- I have been in terrible pain every day.  I have two leg surgeries coming up, but I really want to make good progress before I am side-lined.  

I will admit to something though: sometimes feeling pain is all that makes me feel alive.  I know it sounds completely strange, but it is when I feel the results of a run that I feel most alive.  Maybe it is because I went through a few years where I felt NOTHING.  Maybe because I know in a few years I will not be able to feel this pain again.  I don't want to sound like a freak, but it is when I am sore and hurting that I feel the most alive.  I guess that is because I know I have pushed my body to do something it couldn't do, and may never do again.

I look back at the times where I was numb to the world, and look to the future and the scariness it holds. I think to myself, if given the choice, I would most definitely choose to feel the pain.