The Start of Another Year

I wanted to write a nice reflective piece about how the past year has been one of significant evolution. I wanted to write this eloquent piece on the anniversary of my moving back to Tullahoma, and talk about all of the events.

Then I ended up with a 103.8 fever, so I decided on Plan B...

This past week, I ended up with some sort of illness.  Over the years, I have really stopped trying to pinpoint exactly what I have each time (mostly because it will end up driving me mad). I don't know if I can remember being so miserable in my life (which really says a lot when you know about the level of daily pain I have).  I felt delirious from fever, everything in my body hurt at a level I had never felt, and I couldn't swallow. Even drinking small amounts of fluids caused me tremendous pain.

I continued to go to work, because I knew I needed to hear what was going on before school started.  I also knew I am a single parent, and can't afford to give up sick days unless absolutely necessary.  So, I minimized my risk at work, decided not to lick anyone for those days, and sat through meetings while I shivered.

Now that I made it through the week and am feeling somewhat normal, I can get back to my original intention.  I wanted to look back over this year...

I remember a little over a year ago: I packed up my necessary belongings, two children and a dog, and moved to Tullahoma.  The car overheated on the way, and I wondered if I was going to make it to my parents' house in one piece.  I was moving in about twelve hours before starting my new job, and took enough clothing and personal items to last us a few weeks.  We would be moving the remainder of the house two weeks later.  

Well, the two weeks turned into a month, and eventually we just wanted to get everything to Tullahoma.  It's hard to "start over" when everything happens in stuck stages.  What I mean is that the moment of me driving down the road toward Tullahoma- THAT should have been starting over.  But I knew I was in limbo until I had my belongings.  

Then fighting moving companies and packing up everything by hand (and with the help of incredible neighbors and family!).  I remember finally driving away from the old house and FINALLY realizing I never had to go back to that place... There were a lot of rough memories there, and it was a great feeling to let go.

A few months later, the divorce was final. Another pivotal moment when I walked out of the courthouse and realized that I was finally free.  I had done a lot on my own for quite some time.  But I was finally ON MY OWN.  Some people feel terrified after a divorce is final.  I felt liberated...

And it was after this time, I decided to put this project into full-force.  I had a list floating around in my head, but it took the divorce being over for me to realize my life was ultimately up to me now.  I had two children to care for, but I didn't have anyone to answer to.  I didn't have anyone to tell me that a place was "too far," or an idea was "too crazy," or we didn't "have time" to try something.  There were no more excuses.

And so I began this journey. It really had everything to do with me--what I wanted, what I needed, and what would heal my soul.  There was an awful lot of hurt that had been piling from years of events, and I needed time to sift.  This really had little to do with the divorce, and more to do with recovering from my injury.  I realized I didn't have time to deal with the injury because I was enduring a miserable existence at that time.  I believe the brain is an awesome tool, and it only lets you deal with little bits of information at a time.  If you had to deal with the reality all at once, you would most certainly go crazy.

I didn't have the advantage of having a fully-functioning brain.  

So, I had a flood.

And I felt like I went crazy.  Never in front of others, and it was never noticed.  I just felt like who I was slipped away and returned frequently.  I am not sure who was there, filling the void, during all the other times. I know my eyes looked vacant often, and I imagine those were the times my soul attempted a vacation.

I try to be optimistic and enthusiastic on here. I. try.

Let me say briefly: recovering from a brain injury can be maddening.  There are days three years later that I don't remember a connection I have with someone.  I wake up and don't remember that I love this person? I can stand next to someone, and have to question my exact feelings, because my mind has to remind me how I am supposed to feel. It isn't depression or any sort of mental flatness.  I can't remember who I am connected to and who I am not.

This doesn't happen often, so I hope people don't read that and think I am on the edge of doom here...

But it happens enough to make me very afraid.

And the other part that has been hard? The recovery of my muscles.  For every two months forward, it's one to three months back. I have been working and training, and then resting and moving again.  I wonder if my training did any good, since I ended up with two surgeries and one leg that will never be the same.  In fact, the surgeon is now referring me to a manager for the pain, because a resulting condition from the surgery has no cure.  As long as I have the condition, I will have the miserable agony.  And I will have the miserable condition forever.  Fan-freakin'-tastic...

I do have to pick myself up out of this hole now and focus on the positive of the year.  Any more of the miserable, and I could be stuck for quite a long time...

In the winter, I did meet a most fantastic man.  I will say I was skeptical of the idea of connecting with someone again.  I had an almost analytical approach to dating, and tried to sell myself on all of the reasons I didn't really even need to worry about finding someone.  The reality: penguins have it figured out. They find a mate, and stick with them.  It's better for their physical well-being, emotional security, and sanity.  Being a pair and having a bond with someone is incredibly important.  I get it now.

So, through these months, life has seemed to evolve for Tom and me. I have pushed through these goals, we have taken a lot of walks, had a lot of talks, and tried briefly to solve some of the world's problems.  I appreciate that he endures my enthusiasm for many topics, that he encourages my ideas, and is patient on the days I am feeling rough. I will say that last part was the major reason I really thought about not dating for a long time.  I know I was in pretty bad shape after the accident.  I know it will never be that bad again, but I also never want to be a burden like that for someone.  

I know that none of us can control what will happen in life.  If something happened to him, I would of course do what I needed to do to care for him, and not think much of it.  I guess it was a lot for me to expect someone to do the same.  I'm not sure why, and a therapist would probably have a field day with that revelation...

In a little over 100 days, I will turn 30.  That really doesn't seem like a lot once I write that number.  I still have quite a few projects to mark off the list before the big day.  It seems that life has changed drastically in the past year, and there are many more memories to make in the next hundred days. 

And as some sort of evil cosmic joke, I see a Twilight movie is being released on my birthday... So, there are people with tickers on their Facebook statuses, counting down the days to my birthday... with a wimpy vampire's face next to the number...

Happy birthday to me... :-P

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.