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.

  

The Definition Of Insanity

The definition of insanity is doing the same thing over and over and expecting different results.  I, on the other hand, called doing the same thing over and over and expecting different results, hope.  I kept posting and emailing companies, looking for either help fundraising to pay for chronic pain seminars, or looking for a church, business, place, etc. to at least donate space to me to use for a chronic pain seminar.  It was so very hard for me to even make a fundraising page.  I felt embarrassed and ashamed that I couldn't just do it on my own.  I've never had much through my adult years, so it makes me feel funny to accept a "gift" (donation) from someone.  I was grateful for each and every one, but it still made me feel funny ...and bad, to accept it. I've also been a very strong-willed person all of my life, so to accept that I "do" need help, was hard for me. Regardless of how it made me feel, I went ahead and bit it, and made the page.  Even though I kept getting "no's", I still kept emailing.  Even though I'd ask for others to please share the fundraising link throughout their media sites and only a small handful would, I kept asking.  Although I knew the definition of sanity was doing the same thing over and over and expecting different results, I still plugged along.  I kept telling myself that phrase didn't apply in this situation.  If I asked enough people to either donate or share the page, that eventually it'd pay off.  See, I'd always been raised believing that a person could achieve anything in life that they want to achieve, as long as they worked hard enough at it.  I've also raised my own kids to believe the same thing.  

I can't begin to tell you how embarrassed I've been, practically begging people to help me.  For a long time, I was able to ignore it, tell myself that I knew this wouldn't be easy from the start, and I could keep swallowing my embarrassment and moving forward.  I just can't do it anymore.  I've finally broke, and realized that doing the same thing over and over and expecting different results really is the definition of insanity.  All along I'd maintained that I wasn't just trying to do this for me, I was trying to do it for the approximately 116 million other people in the U.S. who suffers from chronic pain, as well as for myself.  Late last night, it hit me that where I'm not getting anywhere with this, that maybe educating people so that they'll understand what we go through, and advocating for more research to find a potential cure or treatment plan that allows us to have a half-way normal life, may not be important to very many people besides myself.  If it was, I'd think that I would've gotten some help along the way.  Now, I completely understand that the economy isn't good right now, and that people have tight budgets and may not be able to make cash donations at this time.  Believe me, I truly do get that because that's where I'm at myself right now.  But it's free; it doesn't cost a single penny, for people to share my mission on their facebook page, on their blogs, on their twitter accounts pinterest, etc.  My thoughts were along the lines that even if the people I reached out to couldn't make a cash donation, that if they shared the message themselves too, that it'd reach enough people that some may be in the position to make a donation.  

There are quite a few things I'm trying to work through right now.  I'm not embarrassed to admit that I have the co-morbidity of depression secondary to my Fibromyalgia.  When my marriage first ended, I finally had to go on medication for my depression.  It really helped me a lot.  I think that I may need a med change, or my dosage upped, because I'm again finding myself feeling sad and hopeless more days then not.  I think a lot of it has to do with the upcoming holidays.  Being as sick as I am (today I can't hardly type due to the stiffness and swelling in my fingers, for instance), not being able to work a real job due to my pain, stiffness, and depression, not receiving any child support or alimony, has me absolutely dreading Christmas.  Christmas has always been my favorite holiday of the year.  The absolute joy and pleasure I'd see on my families faces when they'd open their gifts, brought me pure joy.  Even though presents may be few throughout the year, I'd completely spoil my kids at Christmas time.  I absolutely loved seeing mountains of pretty, wrapped gifts under our tree.  For myself, the only gifts I'd usually get was from my parents.  -Again, that was fine with me because I feel awkward when people give me things anyway.  My joy, was in picking out, wrapping, and watching my family open what I'd bought for them.  Long story short, I've lost my joy at this time.  I've lost my hope.  Not only was the seminar important for me personally due to my health, but it also was important for me, to do as a career.  To be able to bring in money that's desperately needed for my bills, for my family, and for the holidays. 

Right now, I feel ashamed of myself that I can't work a "real" job.  I feel ashamed that I'm not able to provide the things for my daughter that she deserves in her senior year of high school.  I feel ashamed that I struggle so much to pay my bills.  I feel sad and ashamed that I actually pretty much was begging people to to help me get the seminar going.  I can't keep feeling like this.  I have to concede to the fact that maybe chronic pain seminars, and advocacy and research, may not be as important to others as it is for me.  -And that's ok, because however someone with a chronic pain and fatigue illness feels, is valid.  There is a lady that's not only a bloggy friend, but she's also a fibro sister.  This woman has gone above and beyond, trying to help me build this page and my facebook page, along with trying her very best to help me get the seminar going.  She's posted and posted asking for help, and she's made several donations to the fundraising page.  Every time I post asking for people to share about me and my mission, she does.  It's to the point that I even feel guilty for that, because she's put so much work, time, and money into helping me.  I'm going to leave my fundraising page up and if someone runs across it and wants to make a donation or wants to share it that's great and would be very much appreciated, but I'll no longer beg for help with it.  Begging and still not getting anywhere is completely demoralizing to me, and I just can't do it anymore.  It makes me feel ashamed of myself that I can't just do it on my own.  Therefore, I will wait until I can do it myself.  Hopefully that time will be soon, but if it isn't, then it isn't.  I'm not going to keep worrying about it.  

The quote above, is how I was looking at things.  I thought that if all of us sufferers banned together, that together we could bring about a change.  A change in the way other people look at us.  A change in the way that even those in the medical field look at us and treat us.  I am so tired of DHAC's (people who doesn't have a clue) looking at me and telling me that I'm just too lazy to work.  That it's my fault that my daughter is going without stuff that she should have.  It's my fault that I'm so poor at this particular time.  I thought with so many of us, that we could demand change and research.  To be completely honest, I still feel this way.  I'm just not strong enough right now to keep trying.  I just can't take more rejection right now.  Hopefully once the holidays pass, I won't have so much on my mind and I'll jump right back in again asking for you all to help me start advocating again.  Maybe I'll get lucky in the mean time and the opportunity to hold a seminar will drop into my lap. Regardless, I want to thank everyone who reads my blog and facebook page, for sticking things out with me.  I'll do anything I possibly can to be there for you guys.  I'm just praying for a much better year in 2013.  For all of us.