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.

Breaking Point

I realized I hadn't written in a week or so, and I guess I need to back up and give the full story...

My life has been running smoothly- I have been enjoying my job, I love watching my children grow, and I have been motivated by working on all of these projects.  Life has been good!

There is something that is always lurking. It is my shadow, and I wish I could shake it. I have good days, and I think that maybe it was a dream- maybe I was exaggerating the pain.  Maybe I was just being a wimp.

Then it hits. And I feel like I have been run over by a Mack truck. Then the truck backed up and ran over me again, and again, and again. 

I went on for years like this. It was the aching like the flu, but for every day of my life. If you can imagine the aching that makes it hurt to change the channel, hurt to blow your nose, and wonder if you can even make it to the bathroom and back--this is what I deal with every day.  You learn to live with it, but it's misery.  There's no way I can go without a job, so I carry on. I try to remain optimistic that there will be treatments that will work, but so far there has been nothing.

The pain is bad, but the worst part for me is that my brain gets slow. It almost feels like it comes to a grinding halt.  I know when there are too many messages traveling around my body, it is hard for one to concentrate.  I also know that I am particularly sensitive to my brain and it's ability to think.  So, while people may not notice that I am having trouble, it is killing me inside.

This morning was my breaking point.  I have had a week of pain that has been building, but I have really tried to shake it.  Looks like remission is over, and a flare is in the works. I was already going to be home today to care for a sick child, so I am now able to regroup and look at what I need to do to maintain some sanity.

In the past, I remember that eating certain diets has helped dramatically.  It looks like I will be taking another look at the gluten-free diet.  I have read a lot of conflicting research on the matter, but I know that for me personally, it seems to work.  I also know that there is a lot of food allergy in my family, particularly with wheat (on both sides).  I guess this was a long time coming...

I also need to exercise my boundaries, and say no to extra things.  There has been a lot of undue stress lately, and I am sure it has taken its toll.  I know that I am worth nothing when I am miserably sick, so I need to put myself first.  Since I am the sole provider for myself and my children, I need to be extra-vigilant to make sure I am well enough to work.  I am sure that situation in itself creates extra stress.

I have a few more weeks of work, then I work a very light schedule for a month (extended school year).  This should provide me an opportunity to keep my mind active and bring in some money, but also get the rest I need.  I also have a ton of projects I'd like to get involved in. I have books to read, places to go, and a massive scrapbooking project to undertake.  These are all things I will enjoy, and that will be low-stress, so I am sure they will be healing for my body and soul.

I always take it hard when a flare starts up.  It's like I let myself down.  For those of you that don't know much about fibromyalgia/chronic fatigue syndrome, I am going to take an opportunity to educate.

Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FMS) are regarded as two different disorders, but are often overlapping.  CFS focuses on immune dysregulation where you feel an incredible amount of disabling fatigue, often with a low-grade fever and achiness.  It's not fun. At. All.

Fibromyalgia is over-active nerves and tenderness throughout the body. It's a widespread body pain that will wipe you out.  It often feels like the pain you have from the flu, and it also causes hypersensitivity to the world around you. Touch, fabrics, temperatures, lights, smells- everything causes headaches, nausea, irritability.  It's like your body is on sensory overload, and is just SCREAMING!!!

For a long time, doctors thought people were just crazy. I really believe because there are more women diagnosed, it went along with the fact that some people believe women just have psychosomatic issues or are just faking for attention.  The reality is that there are men that live with these illnesses, but are under-diagnosed, or don't go to the doctor for care for fear of the label.  There is also a strong connection between people that have suffered abuse or some sort of trauma and fibromyalgia, so some people are quick to believe it is some sort of mental label.  The brain rewires pain signals after physical traumas (violent attacks, car accidents, abuse, rape), so it is no wonder that people would end up with chronic issues involving nerves, muscles, and the immune system after such events.  It should be mentioned that some people develop these problems with no such histories.

Sleep disorders- my last rant.  I think the body would be able to heal itself if decent sleep were to occur.  People with CFS and/or FMS desperately want and need sleep, but can't get restorative sleep to save their lives.  My body never goes into deep sleep.  Well, it can go into deep sleep from the hours of 1-4pm pretty reliably, but I can't seem to find a job or lifestyle that is conducive to that sleep pattern.  So, I live a life of sleep deprivation.  Sleep aids don't help, I monitor my exercise, and I still end up exhausted.  I fall asleep early, and "should" get plenty of sleep.  I wake up exhausted beyond belief. every. single. morning.

For those of you that already knew about CFS/FMS, I apologize for my PSA.  For those of you that didn't know, I hope that offered a brief summary.  I am not a pessimist by nature, and I guess that's why I have lasted so long.  I am quickly becoming a realist, and I am seeing what I am now capable of handling.  At this point, I am looking at the next few weeks and seeing I will need to follow a pretty tight schedule.

So the kids' birthday party is going to be relatively low-key, the work commitments will be met, and nothing more, and to those of you that send me messages and want an immediate response- I apologize in advance.  I am going to make an effort to see friends, to laugh every day, and to get hugs as often as possible.  I want to stay upbeat and positive in what I know is about to be a rough time.

Ah, the significance...

Since it is raining outside, and I am on a "recovery day," today would be the perfect day to tell you about the significance of each of my goals.

Now, keep in mind that I did not sit down and put weeks of thought into these goals.  But also, anyone that knows me for more than a minute will know that everything I say and do means something (even the random things).  So, looking at this list is actually intriguing, because it shows where there are obvious gaps and room for healing in my life.

"Learn to play the drums" This is interesting because I was in band for several years, so I have a good concept of music.  I also play music CONSTANTLY (of all varieties), and there is always music on my mind.  I don't know how I had survived this many years without learning to play.  The idea for this task came about when I found a unit teaching math with drumming.  I attempted to even play some basic drumming beats, and found that my rhythm was severely off.  Anyone that knows me well would also know that I was born without rhythm. ;-)  This shall indeed be a challenge!

Learning Italian has always been an interest of mine.  I have always been fascinated with the country, the culture, and the language.  I think there is definitely a longing I have to travel to another country, or even to disappear for a while.  To be even swept up in another world.  For now, I will attempt to learn my phrases.

Catching a fish is something basic that I guess I just never got around to?  I guess it really is important to me because I have always lived life with one foot in the outdoors, and the other curled up with a book.  I have been whitewater canoeing and camping since I was a small child, and I am confused as to how I got this far in life without catching a fish?  My students are very concerned with this, and rest assured this task will be complete by spring. :-)

Designing a website was chosen to make me less scared of computers... Yes, you can laugh...  I use them often, and I will say I like what they have to offer, but there is nothing like the old school feeling of a book in your hands or a pen to paper.  I know I am too young to be saying all of this, and I need to get with it.  I also have a lot of practical needs for website design, and know I could use it for classroom projects and other things.  It is also just a good skill I can have, and something I can say I did. :-)

The karaoke in public goal was designed to get me up in front of a group of people.  It was not designed for public humiliation, though it may have turned out that way...  I did sing in front of about thirty middle and high school students for about six songs, which really took me from terrified to only halfway scared.  One kid is always a critic at school, but he told me at the end of my rendition of I Will Survive, "Ms. Winn, I can respect you now." Good stuff...

Reading the ten great works of literature is really just to get me reading good stuff again.  I do read all the time.  I mean ALL the time...  I read for fun, I read for work, I read a couple of hours out of every day.  I just wanted to push myself to read more of things that will have an impact on my life and on my teaching.  I met a guy and was talking to him about books.  I asked him what he liked to read, and he said "I'm actually taking a break from reading right now..."  Is that possible? And did he just say that to a TEACHER???

Traveling to another country and traveling first class are meant to get me back out in the world again, and to treat myself right.  I have always been a dreamer and a goal-setter, and it is time that I did what I could to make my dreams happen.  And I might as well go there in style, right? ;-)

Eating vegetarian for a month and enjoying it...  I was actually vegetarian for quite a while... I can't say I enjoyed it terribly much.  I didn't really have a love for vegetables until fairly recently, and I can say now that when I attempt this again, I will be trying tons of different foods and doing it right. :-)

We have already touched on the running goal, but it is good enough to be said again.  When someone spends periods not being able to walk, it is pretty awesome to be able to run!!  I will tell you that this training (even though it has only been four days) has been some of the hardest work I have done in my life.  I think this goal has been a project in itself!  I will go ahead and say that this goal will more than make my last goal of making all of my "physical" numbers better by my birthday.  The doctor has already been singing praises since I have lost weight, and it is only going to get better.  She is very aware of my workout requirements, and is working with me on managing my fibromyalgia during this training.  The interesting thing I have heard is the body actually responds better to intense training.  It's almost like it has overload, so it doesn't respond to the mini-stressors like it would in everyday life.

In reality, I think I am just too terribly sore from pushing my body... I don't notice the fibromyalgia anymore...

So, I know I have missed some of the goals, but I don't want to write a novel.  I will talk about the rest of them on my next day off from training.  Tomorrow I train with Jesse, and he will work me hard.  I will hopefully be able to walk to my car when I am done...  He's great in motivating and teaching me technique, but he also doesn't let me make excuses.  And that is exactly what I need right now.