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Wednesday, April 3, 2013

Am I As Invisible As I Feel?



I know that many who will read this post, know me well.  Those of you who are new to this blog, may start reading this, and ask yourself "What is this lady doing? If she's an advocate for chronic pain and research, then why isn't she being all super happy and over the wall professional?".  I'll answer that for you right now, so you don't have to pause and ask yourself this question a paragraph or two into things.  Yes, I'm a chronic pain advocate. Yes, I will do anything and everything within my power to advocate for further research to find a cure for chronic pain conditions such as Fibromyalgia, Lupus, RA, CFS/ME, CRPS, Osteoarthritis, ...and the list could go on forever and ever unfortunately.  What I am not, is a doctor.  Or a scientist.  Or any type of medical professional.  I've never had a college writing class other then English composition I & II.  I've never had a public speaking course.  In fact, I don't have any fancy initials of any type behind my name at all, except for those I've jokingly donned as CPS (Chronic Pain Sufferer).  

In this blog, I "talk" about real problems.  Real feelings, that sufferers of chronic pain conditions feel.  If everyone out there that suffers from Fibro, or Lupus, or what-have-you, is all happy and positive in all of their posts, then they aren't being honest.  If they aren't going to be real about the facts, feelings, and challenges we face, then why write or try to advocate at all?  Because in my own personal experience, as a person, not as an advocate, people are not going to be able to really grasp the true concept of this illness if you don't tell them what the true concept of this illness is.  If they don't suffer it, they don't know it.  It's that simple.  If someone reading this can't connect with me, and really understand what I'm going through, then how can I expect them to help?  If this illness (any of these illnesses) aren't bad enough that you're still all happy and strong every day, then why should they bother wanting to contribute funds to further research?  After all, our life must not be so bad if we can remain so strong.  That said, you won't get any "sugar coating" of my life or of this illness on this blog.  What I put, is how I feel.  What this illness has done to me.  How it's made me feel.  

So how am I feeling?  I'm feeling really sad.  Not just Fibro, but almost all chronic pain conditions run the co-morbidity of depression.  If you hurt every single day of your life, and you've had to give up things and people you love because of your health, you'd probably be depressed too.  No joke.  I'm not embarrassed, nor am I ashamed, to admit that I suffer, horribly, with depression. I can't begin to tell you the amount of tears I've shed off and on all night tonight.  Right this very minute even.  I've gotten so good at crying, that I do so silently now.  The tears slide down my face, and no one would be any wiser if they weren't looking at me.  Sometimes, like tonight, I often wonder if I'm invisible.  If my tears are invisible.  

I feel as if I'm stuck all alone, confined to my dining room because God knows the pain I'd be in if I tried to sit comfortably in my living room.  This computer, it's my gateway to the outside world.  The real world, where people go places, and do things, and have friends, and date, and enjoy life.  Where I can look, and read, and see that people still go places.  They still have friends.  They still have fun.  If I didn't pop online and make a status on facebook, or post on this blog, then I'm not sure that anyone would even know that I exist anymore.  This illness, it's taken so much from me.  I sure didn't let it.  I didn't want to give up a happy, fun, carefree life.  I didn't voluntarily hand it over.  Heck, two years ago I would've laughed if someone had told me this would be my life now.  This.  I don't even know what else to call it.  

This crap with my body, ...the fibro, ...the still unnamed autoimmune disease that's putting calcium deposits in my lungs, and on my bones.  It's created the most lonely, miserable, low self-esteem life that I could ever dream of.  I'd love to blame it for stealing my marriage.  I have blamed it for stealing my marriage before.  Right here on this blog even.  I don't think so any more though.  He'd left me before, when I wasn't this sick. If he truly had loved me, this wouldn't matter.  No, in the past year he's been gone, I've come to realize that this was just his excuse.  His idea to blame, so that he didn't have to shoulder the burden of guilt himself.  His excuse that my health was just too "stressful" for him was just an easy out.

One time when he left me, we divorced.  We were divorced for a year, then decided to give it another try and remarried.  In retrospect?  A horrible idea.  Still though, things were hard for me.  I had four children.  I went to community college for nursing during the early morning hours.  I went from there, to a 2nd shift factory job Monday-Friday.  On Friday night when I'd get off at the factory I'd go straight to work as a waitress and bartender until close.  I'd go to work at the same bar much earlier on Saturdays and worked until close.  On Sundays, I worked at a different bar that served a lot of food and worked a 12pm-5pm shift.  It was hard.  But I could do it.  I did do it.  I had plenty of money to support myself and my kids.  I was out among the living.  I had friends.  Friends from college.  Friends from work.  Friends from high school.  The kids and I went places and did things.  I was asked out on dates. I was pretty. I had a great attitude and was fun to be with. If I was alone, it was by choice.  

Oh how the years change and complicate things.  This time when he left, I hadn't worked in years.  It hurt my body too bad.  I didn't know what was wrong with me, but it hurt to work and my husband told me "Well, don't work then.  I make enough for us to get by".  I didn't work.  I sat home, taking care of the house and the kids.  I engrossed myself into their school activities, and their friends.  I had supper ready for my husband damn near every night by the time he walked in the door from work.  I filled my life and my heart with being a wife and a mother.  By the time he left this time, there's no way I could work.  No way.  It puts me literally in tears to stand long enough to fry an egg.  I don't have any "outside" friends, because my husband and my kids were my life.  I concentrated for years on nothing except for them.  I truly believed my husband was my best friend.  I'm not pretty any more.  My dad's side of the family is blessed with the fat gene curse.  Before I was sick, I kept my weight off.  I had to work my ass off to stay nice and curvy with a flat tummy and legs of steel, but I did it.  Now, I can't exercise like that. Some days I honestly have to have my youngest child, the only one who still lives at home, come into my room and help pull me to a sitting position in the morning because my lower back hurts too badly that I can't sit up on my own. When you're in that kind of pain, exercise is not an option. I'm fat.  I'm more then fat, I'm obese.  If anyone tries to say that doesn't carry a stigma with society, they're out and out lying!  

How am I ever supposed to meet new people?  How can I make friends?  I can't go get a job, and meet people in the work place.  Heck, I wouldn't even begin to even know a shift I could work because sometimes with my insomnia I'm not able to go to sleep until 8am.  Sometimes it's noon the next day.  Other times, last night for example, I actually was able to fall asleep around 12:30am, but then I was awake again by 5:30am.  By 1pm today I couldn't stand it and fell asleep for 2.5 hours.  What job would be able to accommodate me?  Even though I believe in God, and I pray, I can't even commit to going to church because I never know if I'd be awake or not. Even for evening sessions.  Or if the pain will be too bad to go. How am I supposed to meet people to make new friends?  As for dating?  Huh.  Yeah.  I couldn't buy a date to McDonald's.  They'd take my money and throw me out of the car before we got there.  Seriously though, what man, what good man would want a 42 year old woman who's fat, sick, and can't work to support herself?  Not much of a catch.  This illness, ...or these illnesses, have stripped from me every single shred of self confidence and self worth I've ever had.  



Still, I don't lose hope.  This hope, drives the fire in me.  It pushes me to tell my story.  It forces me to swallow my pride and not care what some may think of me for admitting my weaknesses and feelings. For admitting my physical and emotional pain.  This hope is what's motivating me to organize a walk/run in September to bring about awareness of chronic pain conditions and to raise funds for further research.  I have the hope of a cure to be found in my lifetime. I have the hope of a treatment plan that will actually work, to be found yet in my lifetime.  I don't have a clue how to organize this thing, but you can bet your ass that come September this thing will be happening, because I will never give up.  Never.  If I give up, then I'm letting go of hope.  I can't just sit back and depend on others to create enough awareness and research for a cure to be found.  I have to do my part in this.  A cure may not be found in my lifetime, but it sure as hell won't be from my lack of trying to do all I can.  

See, no matter how sick, or how sad or broken I may seem at times, I still have hopes and dreams.  I'm fighting tooth and nail right now, to try and ensure that my hopes and dreams come true someday.  I hope to live without debilitating pain every single day of my life.  I hope to be able to work again someday.  I hope to be able to exercise and get down to a healthy weight.  I hope that someday I can show the world that I'm still that same fun, funny, fly by the seat of her pants girl that wants to go on vacations.  Go out to eat and to movies and dancing on dates.  That I still have a huge heart where I like to put those in my life ahead of myself.  That my true joy stems from making others happy.  I have hope ...for a full, fun, life with a loving relationship in it at some point.  That is why I sit here behind my computer, and I post about how important it is to educate others, anyone who will listen, as to what it's really like living with a chronic pain condition.  That is why I open myself up on this blog.  It's my hope for a cure. For now, I'll sit here invisible to the world, hiding behind a computer screen.  I'll cry my silent tears, and I'll hope and dream for the day that I can run outside and jump up and down!  For the day I can take my life back from Fibro and autoimmune illness. The day that living a life with chronic pain is behind me and I can look to the future.



  

3 comments:

  1. Thank you for your honesty and courage. I love Pinterest and found a pin on the 21 best Fibromyalgia blogs, as I read the descriptions one by one I knew that "cute" & "spunky" blogs weren't for me because I am suffering and going through med changes to get undepressed. I have hope, mostly just to get through the next hour and the one after that and the one after that. I will be your friend.

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  2. Amy, authenticity is worth more than all the fake niceties that you see online. My aunt suffers from really bad fibromyalgia and she is in CONSTANT agony. My cousins both live in the mainland US (we live in Hawaii), so I try to help her out as much as possible but it's hard. Watching her writhe in agony is hard, seeing her not be able to sit in a chair for too long because she's in agony... is hard. Her doctors don't know how to help her, she's on pain meds that barely dull the agony and then it seems like the problems just pile up.

    I wish there was a cure, or a legit treatment that could help at least somewhat aleviate the pain and agony you go through. My aunt is in her late 60s though (with a TON of other back problems from a car accident) so they told her there's not much they can do. My friend is in her mid 40s however, with chronic fibromyalgia and she suffers just like you and my aunt but she told me her symptoms have decreased since she started juicing. She got a juiceman juicer and will substitute a meal or two a day with juice. Helped her with her weight a lot and though she's still in pain, she said it's way better. I don't know if that's something you'd be interested in but yeah, just thought I'd share.

    There IS hope. I will be praying for you, rooting for you, hoping that with each day, your hope grows and your pain lessens. I am sorry for going on so long but I really appreicated your kind words to me on FB tonight and I came to your blog to follow you because I realized I hadn't yet and I was just reading your posts and your pain and my heart goes out to you. I think it's awesome that you aren't afraid to show the truth of the pain and not make like everything is so peachy keen, happy dappy. People who act like they have a diesease but fake happiness do more harm than good. Your blog shows others who suffer like you that they are not alone so they feel like there is hope for them and there is.

    You are amazing Amy and I look forward to reading your blog and getting to know you in the future.

    Aloha,

    Jean {What Jean Likes}

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  3. I want you to know that you have given many of us the courage to continue to hope and push for our own pain free treatment plans. You have the courage and strength to say out load what so many of us with Fibro don't or won't say. You may think you are alone, you aren't. We are all here for you. We know your pain and depression, we are all in this fight together.

    Take care!

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