MadameBastet-Firing-NeuronsCry Me A River
Well, today has only been marginally better than yesterday. I am in a
serious amount of pain; 99% of it in my neck, where it almost always it.
It's funny, this whole nightmare started on December 14, 1993.
I have a strange Rainman-like quality with dates, but I think
anyone whose life is changed by illness tends to remember
the moment it happens. I remember I went out to
dinner with my brother. It was a Tuesday night.
I was in finals week in graduate school. I came home,
sat on the couch, and the back of my neck started hurting
Then it started killing me. I had no idea why.
Little did I know that would be the
beginning of an ongoing journey through the medical mill
and all sorts of life-changing experiences.
I'm not sure why my fibromyalgia started in my neck. I always think of that
silly line in one of the Church's songs, "I have anxiety in my neck." Ha! I hate that line. I find it kind of cheesy. This is more than anxiety though. This is pain that radiates down my spinal chord and out into every muscle.
Two years ago I found a drug called Neurontin that was a life-saver. It stopped the pain in my neck. For two weeks, I was totally pain free. It was a gift from God. Except the brilliant doctors neglected to tell me I'd eat like a demon and gain 30 pounds. I'm not even vain anymore. I know I'll never be the tall, slim girl I was in college. But my weight is too high for my health, and I am miserable carrying it around on my body. Around Christmas I lost 20 pounds. It was so hard. I've always been a thin person, so I never had to diet. I never understood how hellish it is to try and lose weight. Talk about getting all kinds of perspective. Now I know.
In March, my doctor and I decided I'd go off the Neurontin and try to lose the weight and start an exercise regime, slowly. That was before my darling kids gave me walking pneumonia. So much for the exercise. The pain was actually OK - until the night of my birthday. When I got home, I thought I was going to die.
I've mostly taken aspirin or some other drug like Aleve for pain over the last 10 or so years. I've never been given a true pain killer, and I've never asked for one. I saw what pain killers did to my dad. I know that when you suffer from chronic pain, getting pain killers can be a dangerous way to live. The chance of addiction is very high.
The past few months, I've struggled with the pain on and off. It seems like it's starting to become more on than off. I admit, I 'borrowed' a few Ultracet pills from my mom - they are for mild to moderate pain. They help 100% as long as I only take around two a week. If you start taking pain meds everyday, you build up tolerance and then you need more and more. Another lovely Catch-22.
Over the years, I have struggled immensely with my health, not just physically, but perhaps even more emotionally. I've been in therapy. I've been very ashamed - as if I did something wrong - as if I somehow brought this on myself.
Perhaps it was all the doctors who told me there was nothing wrong, or insinuated I was just some hysterical female. Thirteen years ago, this disease wasn't accepted like it is today; and even today, some moronic doctors still think you're just hysterical and depressed. I'd like them to live with this pain for a year and see what they have to say after that. Well to be honest, first I'd like to kick the male doctors in the nuts and then have them live with FMS for a year.
I felt if people knew, they wouldn't like me, or wouldn't want to be my friend. Let's face it, I did lose some friends over the years - because of my dad, because I couldn't go out and socialize like I used to. It's very, very rare now, thank goodness, but many years ago, I was unable to do anything. If I ran one errand a day, it was a triumph. I hid my pain from everyone, and I still do to a large extent. I don't want to burden others, I don't want to be seen as different - frankly I don't want to seem weak. I don't want pity, but I do want understanding if I can't do something. I rarely if ever back out on plans now...but every now and again, I am too tired, I am in too much pain to go out. I still feel horrendously guilty if I do cancel on someone. Hmm. Self-esteem issues anyone?
This may sound crazy, but I even felt it made me less of a woman. It's greatly affected my relationships with men. I feel I must hide it, or not let it get in the way of the relationship. I feel like no one will ever want me on a permanent basis - who's going to want to deal with this crap, til death do us part? I am, I would say, probably 95% functional now, but still...I can't climb mountains, I need to rest more than the average bear. I am NOT lazy and I think I overdo it to prove that fact. At one point I felt like I didn't deserve to even date, to have sex, anything. I felt like a fraud. As if I was offering up damaged goods. I worked so hard to try and overcome these beliefs...but it's hard. I managed to really ram them into my psyche and it's hard to let go of them.
I do more physically than some of my friends, but that still doesn't make me feel better. I still feel like I have a big mark on my forehead. The scarlet letter of Having Something Wrong. Perhaps it would've been easier if it had been, God forbid, something more well known. Lupus, MS. God knows I DO not want those diseases; they are progressive and I have seen firsthand the horrible damage MS does to a person. But I never felt legitimate having FMS. I always felt like I had to explain myself. Hello, I am not some hysterical, depressed, neurotic nut who managed to create all this made-up pain. Yes, this is real. No, they can't find it on a lab test yet. But yes, it IS real.
In exchange for going off the Neurontin, the doctor put me on something called Topamax. I am NOT fond of putting all these drugs in my body, but I want to function. I was on Topamax for a week and thought I was dying. It is the single worst drug I've ever been on. I'm going to the doctor tomorrow and telling him I am convinced the Devil created that drug. It fucked with my brain in ways that were so frightening I can't even explain it. It made me forgetful beyond belief. I couldn't grasp certain words - even the PDR said it would do this. I literally sat there, struggling to speak. It does something fucked up to the language center of your brain. It made me beyond tired, beyond fatigued, beyond weary. I can't even explain it. I told my friend "This is what end-stage cancer victims must feel like." Moving from room to room took all my energy. I felt like every drop of my blood had been drained from my body. I could barely make it upstairs. Needless to say, after a week, I took myself off the drug. Within a day or two, I was Ok.
I may do something tomorrow I've not done in almost 13 years. I may ask the doctor for some Ultracet. I do not want to go back on Neurontin. I can't afford to gain more weight. Will he give it to me? That's the $64,000 question. He hands out pills fairly easily. He wanted me on sleeping meds. I tried them for a couple of nights. No good. I don't want to be on sleeping pills. I don't want to be drugged up to the gills. But I don't want to live my days like today, paralyzed in pain.
I'm trying to study for the math exam, and it's hard enough to care about quadratic equations when you feel good! I found out some good news; I'd already been accepted into the University I applied to - but I was also accepted into the Credential program. So this fall, I have to be functional. I need to work and take classes, pain or no pain. I want this Credential more than anything. I finished my M.A. when I was quite ill, so I know I can do it.
I feel weak asking for something to reduce the pain a few days a week. Who knows what will happen. I have refused to go down the road my dad did. I will not use alcohol as a drug, and I will not get on 20 different types of pills. That being said, getting on one pill scares me enough.
No picture day. You really wouldn't want to see me now. :)
