The Sanity of My Insanity

Neurotic. OCD. Anal. Crazy. All are words that have been used, by myself and others, to describe me. What people don't understand is that my neuroses keep me sane. They allow me to have some control in a world that seems to be controlling me. Being organized keeps me sane. Arriving on time keeps me sane. Hanging my clothes the same direction in the closet keeps me sane. And, yes, using coasters keeps me sane!! I make lists, I check off completed tasks, I use spreadsheets (oh, how I love spreadsheets!) and I label my file folders.

My project this week, between migraines, has been organizing bridesmaid dresses. I have been comparing website photos to actual photos of me and/or my friend wearing the dress. Then I enter the style numbers into a spreadsheet (did I mention I love spreadsheets?!) and give them a rating indicating my preference towards each dress. I'm sure many of you would consider working on an excel spreadsheet on a Friday night to be extremely boring. But it works for me. It's a task that I'm good at. There is no (immediate) deadline. And I can start and stop when I need to in order to accommodate my headaches, which are something I seem to have less and less control over.

While feeling the "need" to control things can lead to addiction, eating disorders and the like, I think I'm far from an A&E reality show. I used to have a job where I managed people, schedules and inventory. I loved that job because I was good at it. I believe the world needs people like me just as the world needs calm, laid back people and people who are disorganized and always running late.

I fully admit to being "OCD" but you might be surprised to know that I don't balance my checkbook (online banking is awesome!) and sometimes I don't separate the whites from the darks. So far, I haven't turned any of Jason's underwear pink. :-)

I Need Answers

As I'm laying on the couch coming out of what was a very debilitating headache, I'm feeling very guilty, pitiful and sad. I had two doctor's appointments and a pool date with a friend on the agenda for today, all of which had to be canceled. I'm used to feeling guilty when I have to break commitments but that doesn't make it any easier. My friends and family can only take so much disappointment. If I continue to let them down, I'm afraid they will leave. In some ironic way, I also feel guilty for my self-pity. I want to be, need to be, stronger. And then there is the sadness. Knowing that another day of my life has gone by with me stuck on the couch brings tears to my eyes.

I've always tried to believe that God doesn't give anyone more than they can handle. My brother, my mom and a friend with a...complicated...baby are a testament to that notion. Their strength and resilience are amazing. In no way does my struggle compare to what they are dealing with, or have been dealing with for 25 years. Why then, am I feeling as though my situation is more than I can bear? Why do I feel like I have run out of energy to continue to the fight? Why does it seem that God has given me too much?

I truly am at a loss as to what to do now. Just thinking of all the time and energy I've put in to this "getting better" mission is exhausting enough. Finding the strength to keep going seems impossible. How am I supposed to go to therapy and doctor's appointments if I can't even get out of bed? How can I get better if I can't physically do the things that are supposed to help? I'm confused by this conundrum. Why has God shown me the tools but put them just out of my reach? What am I doing wrong?

Whadaya Want From Me?!

That's exactly what my doctor asked me today. And not in a how-can-I-make-your-day better tone. It was much more condescending and had a very large hint of how-could-you-even-be-asking-me-that. Coming from a doctor that treats headaches and has been my headache doctor for a year and a half, I was very put off. I almost cried...but didn't.

I literally put in hours of preparation before I go to any doctor appointment in order to organize what has taken place since I last saw that particular doctor. It also allows me to sum up the really important stuff since, in my experience, most of them don't have (or take) the time to read all the information they request from the other doctors. Information that I have to pay (yes, pay money!) to have transfered. I keep a very detailed diary with all sorts of symbols, notations and highlights that describes just about everything I do, feel and think every day. Today I spent over an hour working on a time line of events, all taken from the diary, which included when I started or stopped medicines, when certain symptoms came or went and when I noticed any major medical changes. My effort was recipricated with questions like "how do you know this is happening?" and "why are you concerned about this?" Really?!

Anyway, what I want from you, Mr. Doctor, is compassion for a patient that has been struggling as long as I have. I want you to acknowledge that what I'm experiencing is real and that there is a reason behind it. If necessary, I want you to admit that you may not know what that reason is. I want honesty--if you can't treat me any longer, please say so and refer me to someone else. I want professional treatment, the same treatment you would (hopefully) give any other patient. I want to know that there are other avenues I can explore. I want the reassurance that I am not a lost cause. Mostly, I want a little bit of hope.

It's All In Your Head

Man, if I had a nickel for every time I heard that, I'd be a millionaire! Well, at least well into six figures. The ironic part is that it's true. It is all in my head--that's why they call it a HEAD-ache! Sometimes though, I wonder. Am I really having an aura right now or are my eyes just tired? Is the pain as debilitating as it seems or am I more functional than I think? Even after two plus years of never-ending headaches, I still ask myself these questions. Maybe I do so because I'm hoping that I'm wrong although deep inside I know I'm right.

Migraine headaches are an odd ailment to deal with. The pain they cause is indescribable, especially to those who have never had a headache, let alone a migraine. These headaches are not like cancer or MS or diabetes where the effects of the disease, or the treatment (or both) is obvious. Most of the time, other people cannot tell when I'm in the middle of a headache because I've become so good disguising it. Good enough to be semi-functional, anyway. My headaches are complex and always changing, which makes it very difficult to describe what I'm feeling to the doctors and specialists who are treating me. If they can't understand, how can I expect my friends and family to understand? How can I prove to them that it's not all in my head, that I'm not making it up? Some times even the doctors tell me that I'm over-reacting. But they are wrong. The pain is real. The blurred vision is real. The guilt and depression that come with being stuck in bed for days are very very real.

The Best Bad Day Ever

With chronic migraines, there are a lot of bad days. A LOT. This one happened to be on a Tuesday a few weeks ago. As soon as I opened my eyes to get out of bed I was literally…in a mood, and not a good one. The mood took a turn for the worse when I went into the living room and saw socks on the floor and dirty dishes on the end table. The boyfriend, with whom I live, was immediately the target of this unpleasant state. Although he was responsible for the misplaced socks and the left out dishes, he probably didn't deserve the tongue lashing I gave him. I may have over-reacted.

As I went to my appointments and ran my errands, my mood continued to sour. I couldn't seem to get into a “happy” groove. Not one thing in my day was going as I thought it should. And again, the boyfriend was on the receiving end of everything. As he desperately tried to figure out what to do to make me happy, I was cursing the fact that there was nothing he (or anyone) could do. If I didn’t know what I wanted or needed, how was he supposed to? He did not have a migraine-go-away button, nor was he telepathic. All I could communicate to him was that I wanted to be left alone in my misery. I pushed him away.

Eventually, after napping for a bit and getting some food in my belly, I started to come around. Things started to feel…less bad. While we watched our favorite Tuesday night TV show, I found myself creeping closer and closer to him on the couch. By the end of the show we were cuddled together. The boyfriend, being the wonderful man that he is, let me lean on him, and let me off without an apology. He pulled me closer.

Then, an epiphany. I realized that this man still loved me just as much as he had the day before despite the hell I had just put him through. He still wanted to share my days, both good and bad. He knew how hard of a day I had had and he didn’t blame me for taking it out on him. He…understood. I then knew what I wanted, what I needed to make me happy. Him. So I asked him to marry me. And he said yes.

All Mixed Up

Often I feel as though I'm completely lost. Lost in a sea of doctors, paperwork, medicine and tests. I spend my days (and a lot of nights) in a complete fog, trying cook, clean, organize, and even bathe. It's the headache pain, however, that causes the fog, that creates the chaos, that gets me...all mixed up. Do I try to drive to the doctor when I can barely see or cancel and pay the fee? Is it worth my time and energy to try to get the $15 from the doctor's office the insurance company says I'm owed? Should I continue to pay for test after test after test when, at the end of the day, I still have a headache?

I'm lucky to have a strong support group of friends and family. They do as much as they can to help me exist in this mess. Giving me rides to appointments, filling out my disability paperwork, bringing me food when I can't leave the house are just some of the ways I'm helped by those who love me. Sometimes, though, there are things they just don't (and can't) understand. There are times when they are just not available to tend to me. And there are situations that I don't want to burden them with. I fully realize that these wonderful people have lives, too. Lives that shouldn't have to revolve around me. That's were Nick, SA, Tim, Chad and P-Nut come in.

Also known as 311, these five guys are always there when I need them. If I'm feeling down, I know exactly which songs will make me smile. When I'm on a mission to tackle my to-do list, I have the perfect motivational playlist of 311 tunes. To keep me inspired, there are song lyrics posted in all the right places (including a permanent post on my foot). For evenings that are dedicated as "me" time, I have concert DVDs to watch over and over and over again. I love this band and everything they represent: hope, love, unity and happiness. Just thinking of them makes me smile. Best of all, I have unlimited access to them through their music which is always at my fingertips.

I know that life can get tough for everyone. I also know that each one of us has to find our own way to get through those tough times. We all need an outlet, an escape, from whatever may be troubling us. Some people use prayer, others use drugs and alcohol. I use music, specifically 311. It may sound silly, but they really do help me stay positive and love my life.

The Migraine Guilt

I happen to be stuck in a migraine funk right now. This "funk" is a revolving door of pain, sadness, self-pity, depression and guilt. Yes, guilt. Lots of guilt. I know it's not rational but the guilt is overwhelming. I feel guilty for hiding in the dark all day and missing the beautiful weather. I feel guilty for eating a bowl of ice cream for comfort. I feel guilty for breaking plans with friends and family. I feel guilty for something that is beyond my control--not being able to function. And then I feel guilty for feeling guilty!

This migraine (with aura this time) came on around 11 this morning. I immediately took my medicine--it is only effective if taken before the aura is over--then called my uncle to cancel our lunch plans. I found myself apologizing for not being able to meet even though I know he completely understands my situation. I then proceeded to turn off all the lights, close all the blinds and get situated in the recliner with my favorite blanket. Luckily, I was able to fall asleep for about an hour so I missed the bulk of the pain.

I heard my mom come home for lunch and got up to see her sitting on the deck enjoying the sunshine. Back to the dark living room I went, wishing I was able to enjoy the day as she was. A bit later, in an effort to save my evening plans, I took some pain medicine and laid down in the bedroom. There I slept off and on for a couple of hours until my friend called to confirm our plans. As soon as I answered the phone, I could feel the stabbing pain behind my right eye. I was filled with disappointment, both his and mine, for having to cancel. Today is his birthday.

As I think about how today was completely lost, I am filled with frustration. And more guilt. Right now I am bitter that I missed such a nice day, sad that I let down my friend and scared that the headache will still be here tomorrow.