It’s one in the morning on New Year’s Day. I’m alone in my room savoring the last taste of mini-chocolate donuts before my medicine kicks in. Once it does, I get so nauseous that all I can do is lay still and hope that I can sleep.
When the clock hit midnight, I was lying in bed watching a documentary about obese people on my computer.
I was alone.
The only “Happy New Year” wishes I got were two texts. One was from a wrong number. The other was from one of my friends that I’m in the process of losing touch with; I suspect it was a mass message to everyone in her phone.
My mom and sister were downstairs, but they made no effort to come see me. I’d snapped at them earlier, so they left me alone. My boyfriend didn’t say anything either. I haven’t heard from him since seven, when he said he was sorry for not coming over because he was tired and in a meh mood. I’m guessing he fell asleep.
I’ve spent most of that time crying on and off.
You see, the problem is that I’ve spent the last three days with a pain in my left side, and while it fades in and out, it’s been getting worse. Normally this wouldn’t bother me too much, but in the last three weeks I’ve been in and out of doctors’ offices. I started off with a Urinary Tract Infection (my third since May), and after being off of those antibiotics for a day, I developed an ear infection. While I had my ear infection, my allergies ran amok, and I had to get a special nose spray to allow some sinus tube to open back up. I just finished the antibiotics for the ear infection yesterday morning.
All of this would be overwhelming enough by itself, but this happened after almost an entire year when I didn’t go one week without something happening to make me stop what I’m doing and curl up on the couch and wait for it to go away.
All of this has happened because I have fibromyalgia.
I’d explain what fibromyalgia is to you, but I don’t even know myself – my doctors don’t either. They THINK it’s nerves over-reacting and sending out false pain signals. But if that were all there was, it wouldn’t be associated with so many other things. If you stop by any fibromyalgia website, you can click on a page and find a long list of associated diseases and ailments. All of them aren’t even listed.
As if the pain and stiffness weren’t enough, now I have Irritable Bowel Syndrome, chronic fatigue and insomnia, sensitivity to temperature and certain chemical smells, loss of concentration, and worse, anxiety. I hope that my reproductive organs function properly, because I want children one day (Even though I already know this might not be true. I’ve had one cyst and irregular periods so my doctor threw me on birth control a few years ago and that was that.)
So I have my pill cocktails for this thing and that thing, and I have patterns I need to follow or else something will flare up. There’s an even bigger problem with all of these things: I’m nineteen.
I was diagnosed with fibromyalgia at sixteen, and for a while it looked like it was being managed by medication. I was able to function and go to school and go out with friends. It would flare up every now again around my periods and during the winter, but it was still manageable…until January of this past year.
My doctor decided to switch me to a new drug for fibromyalgia. This drug was hardcore. It came in a trial in this little book container. I had to ease into it because it carried some potentially harsh side effects. It was hell from the beginning. I was nauseous from the second pill, but my mom and I decided to give it a chance.
By the middle of the trial, I was so nauseous and weak that it put my new part-time job into jeopardy. I sat through the orientation trying not to throw up. When I started having heart palpitations to the point where my heart stopped beating long enough for me to panic, we decided to take me off of the drug, but of course, I had to taper down because there was a chance of seizures from suddenly stopping.
Ever since, the problems haven’t stopped. I’m more than a semester behind in college because I’ve had to drop classes. This next semester, I will try for the third time to finish Composition 2 and Intro. to Sociology, and at this point, I’m not sure if I will be able to do it on this try.
I did online classes last semester, and this semester was supposed to be my attempt at real classes again. My anxiety has been right below the surface for weeks. I keep thinking, “If I can’t even make it more than a few days without something happening, how can I make it through classes? How can I live a normal life and have a job when I can barely function for more than a few days?”
I’m very aware of how much my parents spend on my doctor’s appointments and medications – it isn’t a small sum. My mom’s stack of doctor’s bills and reports is easily over six inches. I know my insurance runs out when I hit twenty-five, so I know I have a time limit to finish school and find a job, but I’m going to school to be a high-school English teacher. My starting salary will be somewhere in the mid thirty thousand dollar range.
I don’t want to have to admit that I will have to rely on someone to help take care of me, but honestly, on a teacher’s salary, I will be stuck at home until I pay off all of my student debts or I move in with a boyfriend. I refuse to live with friends because I don’t want them to have to take care of me when I get bad. I don’t want them to have to bring me things when I can’t get up. I don’t want them to have to sit with me when I’m curled up in bed sobbing because I don’t want to be sick anymore.
All I can do is hope that it will go back into remission or I can find a way to manage it because I don’t know how I can ever have a normal life with it as it is. I always have the fear that people are going to leave me because I’m such a mess. I tell my boyfriend that I’m a mess; that I’m falling apart, and he tries to reassure me that the rest of me makes up for it.
It angers me when people don’t take my illness seriously. My sister laughs at me if I tell her why I’m feeling bad. I’ve had people tell me it was all in my head or look suspiciously at me when I can’t give them an adequate explanation of fibromyalgia.
I know I don’t look sick, but I like it that way. If I looked sick every time I felt bad, I’d always look awful. I get mad when I see all this research money being thrown at all these other manageable diseases or anti-ageing products when fibromyalgia has the potential to systematically destroy people’s lives. It doesn’t matter that it’s not deadly: if a disease has a potential to confine you to bed, it deserves funding.
My plans for my future are very tentative. Even if I’m only planning a week in advance, I have to add “I think” to the end of it because I have no idea if I’ll be up to it. I’m sick of having to add “I think” to all of my plans.
I want to have a job. I want to go to school full-time. I to live on my own. I want all of the things people my age complain about. I want these things because they’re normal. I want to know that I can be normal. It hurts to hear people complain about this stuff – I want so badly to do it all.
My political views are becoming more liberal. I’m okay with universal healthcare when we can afford it. I need it. I’d gladly pay extra taxes if it means I don’t have to pay for outrageous doctor bills or ridiculously expensive mediation because I react badly to certain generics.
I support abortion because if I were to accidentally get pregnant, I’d have to choose whether to put my body through excruciating hell and lose all functionality for nine months, or abort. I’m not even fond of the idea of abortion, but I still want that option.
I recently started supporting medical marijuana because my body is being worn down by pain medications. I get upset when people try to oppose me on that one. My favorite argument is that America doesn’t need more high people because people with chronic pain are already high all the time. People in chronic pain take pain pills to function, not to relax. (Also, the people who actually would need medical marijuana hate the people who want to abuse it just as much as you do.) I’d gladly eat a pot brownie instead of taking a pain pill that’ll leave me nauseous and weak for six hours and for half a day afterward because my body is already worn down.
Do I need to repeat that I’m only nineteen?
And all I can do is just sit, wait, swallow some pills, try to exercise when my body lets me, try to eat healthy when my stomach lets me, and hope that I can get everything into a manageable state.
I’m starting to feel it’s too much to hope for it to just go away.
For the last five years, I’ve been lying to everyone; my parents, my children, social services, but most of all, myself.
My “courtship” with my husband lasted just three months before we became engaged. A year and a month after we met, I married him. I blindly ignored the warnings from my parents, my loved ones, and my own eyes. I thought I could change him. He would be better after the wedding, when all the stress was gone.
How wrong was I?
Within months of our marriage, what I saw scared me, but I decided to stay, thinking, “I can still change him. I can make him better!” I was so arrogant!
We had just conceived our first child when he sprained my arm. I told myself that it was an accident and justified it to everyone else.
His sister assaulted me when I was pregnant. He put me down in front of his parents. His mother assaulted me many times. They told me it was my fault. It was all my fault. Everything was always my fault.
What’s worse is that I genuinely believed them!
They threatened to take my baby away from me if I left. I was so scared of them, I stayed.
Now that WAS my fault! I should have left, but I didn’t!
He raped me the first time when our daughter was just five days old. I can still remember the searing agony that tore through my whole body as he did it! The tears and cuts burning with fire, my screams mingling with those of our daughter who was in the same room as us! That was my fault too apparently. After that, I had to have treatment for an erosion in the womb. That was also entirely my fault.
He was diagnosed with Borderline Personality Disorder. Now he had something else to justify his treatment of me. He “needed” round the clock care, an excuse to stop me from working.
He moved me away from my parents to an isolated town and wouldn’t let me visit them. My parents still blame me for that, as if I had a choice!
After our second child was born, the abuse got worse and worse. I confided in my midwife about him raping me when our daughter was five days old. She and all the other midwives we saw made a point of reminding him that sex wasn’t allowed before my six week check. Normally a woman is signed off by the midwife within days of giving birth. They visited me for over a month to protect me. As soon as my six week check was over, the rape began again. This time almost every night and sometimes while I was asleep.
I haven’t slept for almost two years! I began to crave the oblivion of deep sleep, but I couldn’t because of the fear of what he would do to me while I slept. Twice he raped me anally because I had a period. If he wasn’t doing that, he would say things like, “I was hoping to have sex with you, but I can’t because you’re bleeding,” as if it were somehow my fault for being a woman.
That wasn’t the end of the emotional abuse. There was always shouting and yelling. The police were called. Social services were called twice. He isolated me more and more from our friends and would only let me go out with one of the children at a time.
He’d lock me in the house and “forget” to leave my key behind. Sometimes, he would move my keys, and when I wasn’t looking, would put them somewhere I’d already looked. I thought I was going mad!
When our son was five months old, we went on holiday with his family. While we were there, he dragged me out of the room by my legs in front of our daughter and threw me out into the rain with no shoes and no coat. When he finally let me in half an hour later, I had to sit in my wet clothes feeding our son, while his mother lectured me on how the whole thing was my fault.
A week later, I was rushed into hospital with chest pains. Everyone noticed the bruises and three people made separate calls to social services on my behalf. They sent two police officers out that night to check on the children and me. It was so humiliating! He would never let me speak to men because as far as he was concerned, I was cheating on him with every single man I spoke to.
While I was visiting my parents, he kissed another woman. I wish I’d left him then! But I listened to his sob story about how he was really going to change this time! He did change …for the worse.
In November 2012, his brother assaulted me. I had to go to hospital and was on crutches for six weeks because my sciatic nerve had gone into spasm. I lied in the hospital and said that I’d fallen in the kitchen. I was so scared that my children would be taken from me this time.Do you know how much sex hurts when you have sciatica? Especially when it’s rape.
In May 2013, I was diagnosed with Fibromyalgia. The doctor believes there is a link between Fibromyalgia and Post Traumatic Stress Disorder. That was another excuse to isolate me further from everyone. I wasn’t allowed to do housework because I was “too ill.” I’d given up fighting him. I was so far into my shell, I couldn’t even care for our children.
He slowly crushed me to the point that I didn’t know any different.
We had a visit from our new health visitor. He told her that he was afraid of bathing our daughter because he was afraid of having sexual feelings for her. I was shocked and scared, but I didn’t know what to do! I should have left him there and then, but I couldn’t! I was paralyzed by five years of emotional, financial, and sexual abuse. He’d groomed me for this very eventuality so that I wouldn’t leave him!
The next day a social worker turned up with two police officers who seized all of our computer equipment. They told me that I needed to get the children out of the house. I replied that if they were going, I would be going too. They agreed.
My children have been protected by social services for three months now. I’ve ended the relationship and am seeking help for the abuse. Social services are being as helpful as they can be, but the health visitor thinks I should have left and should not have my children back. She thinks I’m a failure as a mother.
Maybe I am. I should have left. I should have sought help sooner. I have to live with that for the rest of my life. I obviously don’t deserve my children. Obviously love isn’t enough!
A couple of weeks ago, we finally got an official diagnosis for Alana, one of my twins. The doctor confirmed our suspicions. She definitely has Asperger Syndrome. According to the doctor, there are changes in the works in the medical community to eliminate the separation between Asperger’s Syndrome and Autism by referring to them all as Autism Spectrum Disorders. That’s just a dressed-up way of saying our family has yet another mountain to climb.
I guess the formal diagnosis shouldn’t really change much in our lives. We’ve suspected for several months and we’ve already taken steps to try to help her. We’ve eliminated red dye from her diet, learned to remove her from situations at the first sign of sensory overload, and tried different coping methods to work through the inevitable meltdowns.
But somehow, having the words written that will forever label her…well, it does change things.
Last night, I went through my nightly routine of teeth-brushing and face-washing, and then I checked on the kids. They are five and two, and I still can’t go to sleep without checking on them, making sure they’re breathing, and saying a little prayer over each of them.
I got to Alana’s bed last. I sat there on the edge to watch her sleep for a minute and give her a kiss. As I looked at her, the reality of her diagnosis hit me.
Sure, we expected it. And just like I do with my health issues (RA and Fibro), I’m constantly doing research, trying to find tips and tricks for handling this. I’ve thrown myself completely into figuring out what’s going on in her brilliant mind and helping her through her struggles. But I don’t think I’ve let my heart in on the process. And last night it learned what was happening and screamed in protest.
“THIS IS NOT THE WAY IT’S SUPPOSED TO BE FOR HER!”
She’s not supposed to have to struggle to make friends. She’s not supposed to get so anxious over a picture she’s drawing that she starts crying because she messed up and thinks other people won’t like it. She’s not supposed to have a compulsion that makes her chew the skin on her fingers until they bleed. This should NOT be happening to my child!
There are so many things that are much worse than ASD. I know that and I thank God every day for the health of all my children. But I think every parent can understand that I had a vision of how things are supposed to turn out for my kids. They’re all going to grow up and have plenty of friends, go to college, have a great career, get married to their soul mates, have beautiful healthy babies, etc. And while I know that they will ultimately forge their own destinies, I guess the common thread in what is supposed to happen is an absence of pain.
Pain is part of life.
There’s no question about that. As much as we want to protect our children from it, it’s going to happen. Our job is to be there and help them through it. And while I watched her sleep, I realized that she’s likely to be dealt much more than her fair share of pain. There seems to be new stories every day about children with autism being abused or bullied. The last few months that Alana was in daycare proved that it starts early. The four-year olds didn’t understand her anxiety and meltdowns so they would pick on her about it. It brought me to tears.
As much as I worry about her in social situations as she grows up, I am constantly amazed at the gift that Asperger Syndrome has given her. We always knew she was very smart. As I home-school her, though, I’m seeing evidence every day of just how different Alana is by comparison.
For instance, a few weeks ago, she got her Hooked on Phonics Kindergarten Level 1 book and started reading it to me. She sat for an hour and a half straight going through the last seven lessons in the book. No DVDs, just her. I feel like I’m not even needed now when we work on reading. We’ve completed one-quarter of Kindergarten and she’s reading every one syllable word she comes across.
Beyond scholastics, she understands things on a deeper level than even I do sometimes. Since our last appointment with her doctor, she and I have talked a little bit about what makes her “different” than most other kids. I told her that the symbol for Autism is a puzzle piece because we still don’t know much about it and we’re trying to fit the pieces together.
A few days later, she brought me a piece of paper with a few colored pieces glued on randomly. She said, “Mommy, this is your puzzle. Every day when we figure out something else about me you can glue on another piece until we have it all put together.” Just one of the many things that surprise me coming from a five-year old.
I admit, I had a rather weak moment last night, sitting there on Alana’s bed.
I try hard to be positive and look for the bright points. But sometimes the worry, the pain, the fear all break through and dark clouds roll in. Then, Alexis giggles while she wrinkles her cute little nose, or Avery tells a 2-year old version of a knock-knock joke, or Alana says something really profound.
Then the light comes back, reminding me of just how blessed I am and how much I have to be thankful for.