Hi, My Friends.
Throughout the course of my blogging experience, letter answering, website critiquing, and Fibro Patient interviews, I have managed to simply allude to the inner workings of who I am without actually exposing too much of what is inside.
I almost feel the need to apologize for that. I have interviewed others (obviously I've not managed to get them together and post them all yet) and they have bared their hearts to me. I should be willing to bite the bullet and do the same.
I'll blame my paranoia. "What if I say something that I can't take back?" The object of this post isn't to hurt anyone in my life who might read this, but I have to be as honest as I can about as much as I dare in order to feel "right" about publicizing others' thoughts and feelings.
How has Fibro changed my life?
The disorder is a negative, but the diagnosis was a positive for me. Why? Well, let's start at the beginning.
I was born into a strict, religious family with feelings that I didn't quite fit in. Growing up I felt this constant nagging, a strong emotion that told me I didn't belong to "this" family. It was very confusing being young and unable to logically deduce why I felt the way I did. I remember climbing out of the bathtub, around the age of seven, feeling...displaced. It is that point that I believe I had the first anxiety attack, the first "mental illness" indication that maybe my brain might not be 100%.
A few years later, my parents began to fight a lot. My father had a drinking problem and my mother is not an easy woman to argue with. The sparks flew as well as the slaps and pushings. The constant fighting, arguing, and physical abuse led to a divorce and the subsequent BS that followed, I'll spare you. Suffice it to say, my father stopped talking to my sister and I for years which he still blames on my mother to this day.
I had my first migraine before my parents were divorced and had a few here and there throughout my teens. My biggest problem through school, though, was IBS. It plagued me until 11th grade when finally it just...stopped.
I was really skinny back then, with a height of 5'8 and a weight of 105, so it was quite easy for my ex boyfriend to throw me around a bit when I was eighteen. He was two years younger than me and I loved him so much, I took on the responsibility for him. Still in high school, I talked my mom into letting him live with us and go to school in our neck of the woods. It sounded great to both of us at first but in the end, the life changes had an adverse effect on him, and he began to get physical.
Worse, I became pregnant after one of our bad break-up/make-up sessions. I was young, I knew, but I really wanted to have it. Unfortunately, I was the only one. My boyfriend told me he wanted to go back to high school (he had quit a few months earlier) and get into football again and a child wouldn't allow him to do that. My mother's reaction was slightly less calm.
I waited a long time before making my decision, and because of that, it was made for me one night when my boyfriend decided to body slam me on the hard concrete floor of my basement and kick me in my swollen stomach. My next doctors visit it came to light that the child I carried had "something" wrong.
It was a year after that, when the boyfriend still did nothing with his life and the abuse began to escalate into attempted murder, that I finally took the plunge and threw him out of my life.
Depression set in. And despite my positive and outgoing attitude, it didn't go away. I started smoking a huge amount of pot (more than I had with the boyfriend). It was a daily habit. 1-3 Mari-cigs a day. The men I dated where nothing special to me and when it was over I usually cried because I lowered myself just to feel a moments pleasure, not because I felt anything for them.
I met my husband online around this time and fell head-over-heels. Of course, he was too logical to let himself fall in love over the internet, or even pay much attention to someone he met there. It took a lot of manipulation and cajoling, a lot of fast talking and seduction, but eventually he came out to meet me and the rest, I would like to say, is a happily ever after.
Unfortunately, this isn't one of my romance novels. We were best friends, and I knew the moment I met him he was the one person who would always understand me and stay by my side. He was comfortable and perfect...a little pretentious but no one was perfect! He was just perfect for me.
He dragged me out of my depression and for the first time in ...well ever!, I felt loved. I moved to be with him.
That is when the panic attacks started.
Away from my family and all I knew, I had a melt down. My body gave out and I had the sensation of floating above my body looking down at the top of my head. I laid on the floor of the bathroom and my poor hubby (boyfriend at the time) was helpless to do anything but watch me as I lay there. It was a weird sort of paralysis and I'll never forget the experience. (The stuff our brains can do to our reality is just CRAZY)
I became a hermit. Afraid to go anywhere or do anything. I quit partying, assuming at the time that I was just having a bad reaction to a bit of the Mari-cigs.
Nothing helped. I thought it was just because I wasn't settled. "I could die any day and not have anything, no family here...nothing." I even told my boyfriend: "You could leave me tomorrow and walk away and I would have lost everything. We should get married or I should move back to my home."
A few months later, my boyfriend asked me to be his wife. I agreed, and then pushed to get a nice house instead of our ratty apartment. We bought a house, got married, and moved in all within six months.
I still had panic attacks and then a few migraines. Doctors prescribed me just about every anti-depressant in the world. Nothing worked. Everything made me feel more depressed, more despondent.
Then, one of the worst things happened. My grandfather died. (My entire childhood and early adulthood was surrounded by death. My grandmother Shirley died, then my uncle, then a few honorary uncles, then when I was 21, my grandmother Lillian died. She was a second mother to me living in the same house. Then my grandfather's third wife died, a few of my friends throughout the years...you get the picture. Death and I are well acquainted)
Other than when my grandmother Lillian died, my grandfather was the most devastating blow to me. My father, as was discussed earlier, was not around much so my grandpa (who lived a few houses down from me as a kid) carried the mantle as best he could. He was the patriarch of the family. He owned a collision shop and always took care of any needs of mine that he could. He wasn't Superman...he was THE Super Man. And then he was gone, and I missed his passing by hours.
My husband and I were already having problems at this point. The toll of everything, all my panic attacks etc, hitting us hard. We separated but decided to give things another try. I was at home with my husband, in a different state, picking him up to go back home to be with my ailing grandfather...when he died.
That's when I decided I wanted to have a baby. And I told my husband it was now or never. I quit smoking and a few months later...I was pregnant. I gained over 40 pounds and though I had bled almost the whole pregnancy and I had gestational diabetes, the baby girl was born and healthy.
Cue the migraines!
After the baby, all the symptoms throughout my life came at once. The migraines, the depression, the anxiety and panic, the belly pains...even female issues. For the next few years I was diagnosed with just about everything...and again...the flow of drugs came at me like waves. Nothing worked, and those that did work gave me horrible side effects.
I was on Topamax and lost a bunch of weight...and nearly my life. I had to call my husband and say "I know where your gun is, and I want to use it. You need to come home."
It was a very scary feeling, being out of control like that. I'm ashamed to say I used to think people who committed suicide were weak. But they are not. What if all of them felt the same impulse I did that day? It was as if I were being puppetted by an unseen force, made to try to take my own life. I'll never judge another victim again, nor will I stand by and let someone else be as stupid as I was with my assumptions. It didn't matter that I had a baby that depended on me. It didn't matter that I wanted to live!! My brain was telling me to take my own life and if I hadn't clung onto the rail of my bed, telling myself I was cuffed to it (can't remember if I actually did use the handcuffs or not)...I would not be here, My Friends.
Eventually, I was able to manage my panic attacks and anxiety...all on my own, but it took me years and there were a lot of sleepless nights. There still are some now, when I'm feeling down, but back then, every night I needed to be coddled.
My husband had a very horrible job description. ( ::smiles:: ) I don't know if I would have been able to be as strong as he. But as the time went on, and my migraines became worse, I did nothing. My house was always a mess...I took care of my daughter with inventive ways that made moving minimum. (I would make instant ravioli daily for my daughter and feed her lots of precut fruit and veggies...anything I could buy that I didn't have to spend more than 2 minutes making I did it.) I made her a huge playpin and lined it with padding and put a ton of toys inside of it so I could lay down and watch her play without having to actively participate.
Things were bad. I had no energy, no passion for life, and no idea why. The only joy I found was in playing World of Warcraft, where I had a life that didn't need me to be energetic.
In that world I met friends, had fun, had the only interaction with others outside of my husband and a few out-of-state calls from my mother and sister. I lived in the mountains of New Hampshire still, with my daughter and my husband (who worked far from home and didn't have a lot of time off). I was lonely and bored and My hubby was starting to get...angry with me.
He treated me differently. If I had a headache he would support me to our family and say I couldn't help it, but when I heard him complaining to his friends, I was sorely hurt. Just as he was hurt long ago when we had our first bad fight and he spied on my computer conversation with a friend and read where I wrote "I'm so sick of seeing his face!". (It was a mean thing to say...and I will forever regret it. I have a bad temper and an even worse way in handling it. He deserved better than for me to say that.)
This general disrespect he had for me, grew to epic proportions. I wanted to have another baby and he didn't. Eventually, he told me we could try, while secretly he was making sure that we couldn't. When I figured out what he was doing, I felt betrayed. Someone I trusted went behind my back to make sure we couldn't have another child while telling me to my face that he was ready to have one.
That was one of the reasons we separated. There are a few more, but in all honesty, My Friends, I can't share more than that with you. My husband is a decent man who made some bad mistakes as have we all, myself included. I'm sure the frustration of having a wife plagued with maladies that seemingly are all in her head had an affect on his actions.
As I was saying, we separated. And I found comfort in a friend of mine I knew through the game I played, World of Warcraft. Over time, when things were rough and I was unwilling to forgive my husband, I began to date my friend. I was very scared. I knew I was still suffering from migraines and aches and pains in various spots but my anger carried me through it. Of course, I was in physical therapy too and that really helped me.
I had a new lease on life. Why? I was dating a guy MUCH younger than me, and he wanted to do things...go places...be a part of my life. He encouraged me to keep living mine and I did! I started writing again, this time with a purpose. I WOULD get published. I would become an author.
It felt so good to have purpose! But after one of my trips to Vegas to see my boyfriend, I started to get severe pain. My arm was going to fall off!! (See delayed pain post) Then it was...womanly problems. Pelvic pain, cysts, yeast infections...gahhh! Hard to feel sexy and loving life when you're being kept down by illnesses. I went to the doctors and had every test run possible.. nothing. I went to the foot doctor because of a wart on my toe and I mentioned the arch of my foot was bad.
He noticed a rash on my face and asked me if I'd been tested for Lupus.
I went right home and went to my computer, bawling my eyes out as I noticed all the similarities between Lupus and my symptoms. I tried to break up with my younger boyfriend, not wanting him to be weighed down by a woman with so many health issues.
He pretty much told me I was being a fool for jumping the gun, so to speak.
Luckily the test came back negative, but that brought another question. Fibromyalgia? I was sent to an RA who confirmed the diagnosis. I told her my bad reaction to pills but she gave me some anyway. I had more bad reactions and haven't gone back to that RA yet.
Once I found out I had Fibro, I was happy. I wasn't insane...I wasn't incredibly lazy!
....But I was sick. And I wasn't going to be able to do the things I wanted to do WHEN I wanted to do them. Again, I tried to break up with my boyfriend...who once again put my in my place.
He wasn't giving up on me. But what was I going to do?
My husband, around this time, was dating another woman and spending time away from home, which was good for him. I wouldn't dare begrudge him that when I was dating too. However, I found out he had been lying to me about who he was going out with some nights when he left, and for me that just sealed the deal for us. No one likes a liar. And for me, it is a pet peeve especially since I told him all about my boyfriend and where he and I stood. Always, I made sure to be honest and as a direct result of being truthful, I was painted as "the bad guy", the one who had given up.
I was so mad! Everyone looked down on me and felt sorry for him because I had started dating someone in search of that elusive happiness. And here he was, secretly dating. That was a big fight between us that led to the ultimate horror for me. He told me he hadn't respected me for a long time and never would.
It was devastating to hear, even though I was with someone else. My husband had been...everything to me. I always felt as though I wasn't worthy, as if he felt I wasn't worthy! Now I was to learn he really felt that way? I had his child! I pushed through suicidal tendencies...I fought every damned day just to get out of bed and I finally had a diagnosis! I wasn't crazy. I deserved respect dammit!! But I didn't have his.
A few months later his girl went back to her ex boyfriend and My husband began to "respect" me but I have to admit, that it is too little too late.
In the beginning he was there for me, and that is the only reason we are still able to maintain a friendship...because I do remember that, and I do appreciate the fact he is taking care of me financially until I can do so myself. It is why, every day, I try to earn my keep by cooking and cleaning, something I wasn't able to do when we were married.
We've been able to get back the friendship lost to some degree and I will always love him. I don't know what the future holds. I don't know if I'll be able to let go of the bitterness over some of the things he has done. I just...don't know anything really. I still get teary-eyed when I think about what could have been if I hadn't been ill. But for me, you really find out the depth of love someone has for you when something like this comes at you.
I respect the fact he hung in there at first. For five years we stood as a team and I can't compare that to what my boyfriend has recently done. It wouldn't be fair. I am very grateful that my boyfriend hasn't allowed me to crawl into a shell and consider my life over...especially since I am now published and feeling great most days. But I realize he also hasn't had to live with me either, and he hadn't been with me through all the years of illness without explanation. The level of frustration my husband had to feel, my boyfriend will hopefully never know.
That isn't to demean what he has done for me, which is more than I could have ever thought possible. It would have been so easy for him to walk away from me. We have a long distance relationship, a billion obstacles in the way of our happiness, and an open "if it ever gets to be too much, just tell me" understanding between us that would make it very easy for him to skip quietly away without hassle. And he hasn't.
Yes, Fibro cost me a marriage, a few friends, and a lot of respect...but I have gained too:
A diagnosis, a hope, a determination, love, and an understanding and appreciation of life and ambition I never had.
There will be times where I'm brought low, but I will always stand up again.
All my best to you, My Friends, and may life bring you a strong resolution and a sense of hope.
P.S. There are a lot of holes in the story but I had to write fast before I lost the nerve. Most of you know I went natural in my treatment to feel better when my daughter stirred me out of bed. She is at the root of my determination and deserves to be acknowledged by me on this post. ::Hugs all around::
Thanks for reading.