Compassion

The definition of compassion, according to the Merriam-Webster Online Dictionary (check it out HERE) is as follows: "sympathetic consciousness of others' distress together with a desire to alleviate it".

Why?  Why ...don't most people care about the level of pain that people with a chronic pain & fatigue illness feel?  Seriously.  People are so busy in their own lives, that they don't stop to really think about us.  If they do, they can't wrap their minds around it.  They think that we're just exaggerating.  Or that we're just lazy.  

Today, I had to have my daughter apply a Lidoderm patch on my lower back.  She also had to apply one to my middle back.  At the same time, I took 800mg of Ibuprofen along with 50mg of Tramadol, and 10mg's of Flexeril.  I still hurt so badly, that I had to go lay down in bed for awhile.  It felt as if I hadn't taken anything at all for the pain.  This is how my life is spent.  Hurting. Trying to alleviate the pain.  Being stuck either in my chair or in my bed.  Sometimes being stuck in a bathtub of hot water for an hour ...adding more straight hot water as it cools off. My entire life is spent like this.  Trying to live, by working around the pain.  Trying to plan activities of daily living, around the pain.  Trying to have some sort of quality of life.  Trying to fight back the depression that one feels, when they have to live their lives like this.  I have "live" in bold face, because if you really think about it, am I honestly "living" when this is my life?  The depression that one feels, knowing that they will have to live every day of the rest of their lives with this kind of pain.  In my case, I could be facing another 30-40 years, of constant pain.  To stop and think about having to feel like this for 30-40 more years seems surreal to me.  It seems undoable to me, quite frankly.

I desperately try to advocate for those with a chronic pain illness.  Not just those with Fibromyalgia like I have, or with RA like two out of three of my doctors believe I have, but for anyone who suffers from any type of chronic pain.  Pain is pain, no matter what the diagnosis is.  I feel compassion for anyone who has to live like I do.  I've always been brutally honest on this blog, and I intend to always be honest even though that isn't always painting a pretty picture.  So in all honesty, I fight so hard for awareness, advocacy, and research because I'm hoping that a breakthrough in research happens in my lifetime.  I'm hoping that by some miracle a cure may be found so I don't have to feel the pain anymore.  I'm hoping that I may regain some sort of quality of life before I die.  

When I've been stuck in the vicious cycle of a flare for awhile, it always runs me down.  It makes me sad, grouchy, depressed, on edge, touchy.  Most of you know that after my husband left me, I sat down and put together a seminar on living with chronic pain.  I've never been one to ask for help or charity.  Heck, when someone even brings me a gift for my birthday or Christmas I'm not sure how to act because even if it's something I absolutely love and I'm happy to get, I'm not used to getting things for myself.  Therefore it makes me feel awkward to accept gifts.  I eventually though, swallowed my pride and made a Go Fund Me account.  As embarrassing as it was for me, I shared the site and asked for donations.  Donations so that I could pay for conference rooms, advertising, and travel expenses to present my seminar.  Not only does the seminar give the person afflicted with a chronic pain illness numerous references, tips, and advice for coping with their pain, but it also gives them resources to share with their family and friends to help them understand what it's like to live every day like this.  It also educates those without a chronic pain illness, what it's like to be "us".  To be a chronic pain sufferer.  The seminar also opens people's eyes to the dismal amount of research that we have in this area, and why it's so important to advocate for more research.  Why we need a cure.

This is my "confused" frog face.  Of course, having fibro fog most of the time lends me to look confused a lot of the time, but tonight I'm putting it on because I just can't understand the lack of compassion.  The lack of compassion there is for those of us who are stuck in a life of hell on earth.  After spending 1/2 of my day in bed due to pain, and the other 1/2 sitting here in pain, I logged onto my email a bit ago.  I had my weekly newsletter from Go Fund Me.  Each week, they send one out telling of the great success stories they've had during the week, with donations.  I usually don't open them, but tonight I did.  I opened the email and the top story headline on it was this: 

The Clint Tarver Campaign Clint Tarver made headlines this week. After the Lansing, MI hot dog vendor had his equipment damage by rowdy protesters, America reacted with a ton of support. $33,461 raised by 1436 people in 2 days $33,461 raised in TWO days, by 1,436 people. Wow.  Tears sprung to my eyes.  That is one hell of a lot of money in only a two day time period.  Now, I am sorry that this hot dog vendor had his equipment damaged.  I'm also happy for him that's he's going to be able to replace his equipment because it was his job.  On the other hand though, I've raised $85 in the past six months by a total of four donors.  Now maybe I'm biased, but I feel that this proved to me how little compassion the general public feels for those of us who suffer with chronic pain & fatigue illnesses.  Someone may say "Yeah, but that was that guys job.  He probably has a family to support".  You know what?"  Presenting this chronic pain seminar is my job and I have a family to support as well.  I have to do something to try and support my daughter and myself.  The level of pain, fatigue, and insomnia that I suffer makes it near impossible for me to work a "real" job.  Believe me, I wish more then anything that I could just go get a job in a factory.  I'd enjoy the face to face interaction with other adults, and I need the money.  I really need the money.  The reality of it is though, it just isn't possible for me.  About 3 years ago I got a factory job through a temp service and I made it through 1/2 of the shift.  After 1/2 of the shift I limped to my car crying from the pain.  After sitting in the car for the 20 minute drive home I could hardly pry myself out of it to walk into my house.  I was so stiff and hurt so bad.  Yet this hot dog vendor obviously can work any job so even though he wanted to be a hot dog vendor, he could've went out and found any other type of job to support himself while building the money up to replace his equipment.  You know that my donation page won't even show up in the site's search results?  You have to have had at least $100 in donations before they'll add you into their search results for the different catagories.  I just don't understand how 1,436 people can be compassionate enough to donate over $33,000 in TWO days to replace hot dog equipment, but can't be passionate enough to give a crap about the pain we're going to be stuck in, until the day we die.  As I have previously blogged, the number one cause of death for those with fibromyalgia is suicide.  As much as I'd like to act shocked and offended over this statistic, I can't.  I can so totally understand the frame of mind these people are in when they commit suicide.  The depression.  The physical pain and mental exhaustion and depression.  Desperation. I "get" it.  I know why they want out.  A person deals with as much as they can, for as long as they can. This is why it's so important to educate as many people in the U.S. as we can, about what our lives are really like.  This is why I feel the desperation to conduct my seminar.  If we want any type of cure in our lifetime, then we need to advocate for a cure.   Days like today and tonight, I feel like just crumbling and forgetting about advocating.  Forget about the blog, and the facebook page.  I feel like I'm putting all of what little energy I have, into fighting an uphill battle and that I'll never reach the top of that mountain.  Every time though, I do keep going.  I always will keep going because if I don't, then who will?  Fighting for education and advocacy is the only thing that spurs me onward and keeps me going.  It's the only thing that gives me hope.  Hope that one day people will feel compassion for "us".  Hope that a cure will be found.  Hope, that someday soon I'll actually have a good quality of life again.  Compassion.  Such a simple word, but also such an important word.

I'm A Real Person, With Real Illnesses And I Extend A Challenge To You

As I opened my eyes this morning, I could tell that it was going to be an "off" day.  The feeling that I was awakening after being hit by a Mack truck wouldn't shake.  Last night, everything hurt from my head down to my big toe.  You're probably asking yourself "her big TOE hurt?!".  Yep, even my big toe hurt as silly as that sounds.  

Today, my head hurts and my nose is stuffy.  Ultimately, since I get sick if I even pass someone in a grocery store that sneezes or coughs, I'm sure I'm coming down with a cold.  I feel sad and depressed today.  I just get so tired or never feeling good.  I'm sick and tired, of being sick and tired.  

Feelings of guilt keep me from posting a lot of the time when I don't feel good.  My oldest daughter who's 23 and a graduate student in both developmental and international economics at the University of Denver, gently reminds me every now and then, that I need to conduct myself as a professional.  She knows my hopes and dreams of presenting my seminar and being a speaker at conventions.  She knows that I'm passionate about activism and research to find a treatment plan or a cure.  If I want to be booked as a professional, then I need to act professional right?  Professionals don't go online and complain about their every day mundane aches and pains.

Nikki is one of the toughest people I've ever known.  I'm not just saying that because she's my daughter.  If you met her now, you'd never have a clue what she's been through to get to where she's at.  The amount of tenacity that this young lady possesses is unreal.  Coming from an extremely modest background, ok I'll be completely honest: a poor background, she got a job at 16 years old and has never been without one since.  Sometimes more then one job, all while going to school.  Both high school and college.  She's paid her own way all through college while carrying an insane amount of full-time college credits and still making all A's.  I haven't paid for so much as one single book, let alone anything else she's needed.  Not because I didn't want to, but because I haven't been able to afford to. Researching and finding the best college for what she wanted to do with her life, she switched from living at home and attending our local college of Bowling Green State University, to packing up and jumping on a plane to start a new life in Denver, CO.  She switched after her sophomore year.  She made new friends, found new jobs, and met new people.  Nikki has met some of the most influential people that we have in the U.S.  She's been to grand benefits where she's met and spoke with people such as the founder of AOL, among many others.  She doesn't complain about anything.  She knows what she needs to do, and she gets it done.  Sometimes putting in 14-16 hour days or more, without complaint.

You're probably asking yourself right about now, why I just told you all of this about my daughter.  What does it have to do with me feeling like total poo today?  Well, it has a lot to do with it.  If Nichole says that I need to conduct myself in a professional manner, then I tend to believe her.  I feel guilty complaining because for one, it isn't professional.  For two, how can I complain when she works so very hard, supports herself while attending an expensive college, and she never complains?  Sick or not, she goes to classes and completes her jobs. 

A very old friend that I think a lot of, sent me a facebook message this morning.  He simply said "I feel that sometimes you're too hard on yourself.  Give yourself a break".  You know what?  He's right.  I am too hard on myself sometimes.  Thoughts about these two sentences, have plagued me all day.  Sure, no one wants to hear someone gripe and complain constantly, but if I really feel terrible, then it's ok to admit that.  As much as I want to be a professional, I'm not at this time.  Even if I achieve my dreams and have seminars scheduled every weekend of every month it still will come down to this: A public speaker or not, I'm a human being first.  A real person.  Unfortunately, a real person who has real illnesses.  Illnesses in which there isn't a cure, and not even solid treatment plans that will help.  Illnesses that cause depression. Illnesses like some of you, deal with every day too.

If you're reading this blog entry and you don't suffer from a neuro-immune disorder, or you don't suffer from an auto-immune disorder like I do, then you're probably not going to be able to fully comprehend what it's like to be stuck in a body that's always sick or to have a mind where you'll be right in the middle of speaking, and forget what you were trying to say or even what you were thinking about.  

One of the best analogies I've read, is in a pamphlet put out by the American Rheumatology Association.  It compares Fibromyalgia to having the flu.  Think back to the last time you had the flu.  Do you remember how tired and physically drained you were?  Do you remember how sore your skin was?  How about the sore, aching muscles?  Sometimes when you'd move, you'd get sharp pains.  Your head hurt, even your hair sometimes felt like it was hurting.  Take all of that and add in joints that swell and hurt to the point that you have trouble standing up from a seated position and hurts enough that you audibly say "ow" most every time you go to rise. Although my illnesses doesn't make you run a high fever like you do with the flu, you do run frequent low-grade fevers.  Now, I seriously want you to think about everything in this paragraph.  Then, I'd like to you think about the fact that you're going to have to live every day of your life feeling like this.   Do you know what the leading cause of death among fibromyalgia patients is?  It's suicide.  Women with fibromyalgia have a ten times higher rate of suicide then the general public.  These are people who didn't have any kind of mental health problems before contracting fibromyalgia.  Women with fibromyalgia also have a higher death rate from liver disease and stroke, then women without fibromyalgia.  There hasn't been enough concentrated research though, to find out why women with fibromyalgia have a higher death rate from liver disease and stroke so the correlation to fibromyalgia hasn't been figured out yet. Just one of the many reasons more research is needed.  If you're interested in reading about the study that was conducted to bring about these statements, you can click HERE.

If you'd like to hear a speaker that suffers every day like you do, and "get's it" then contact me and we'll talk.  I'm not a doctor, nor a researcher; I don't have any fancy initials of any kind behind my name.  What I do have though, is first hand experience and knowledge about what people like me, people like us, go through on a daily basis, just to survive.  This seminar will help those who suffer, to see they aren't alone.  It gives some survival tips and lists resources.  It also gives the person suffering the ability to help those around them, to understand what it's like to be sick like this and help them understand.  For those who attend that doesn't suffer, they'll be offered the proof to help dispel untrue myths about these illnesses.  It will provide information on recent studies.  It'll help them to be aware and hopefully instill some compassion in them, for those who suffer.  It also talks about how little research there is, and how important future research is, and why it's so important. Whether a sufferer or a community member; a lawmaker or in the medical field, this seminar will help you to understand the truth of these illnesses that cause fatigue and chronic pain. 

If you think about the paragraph previously stated, giving the analogy of having the flu every day for the rest of your life, hopefully you'll understand how important this seminar is.  How important future research is, for those of us who suffer.  If you have the understanding and compassion, I'm extending a challenge to you this holiday season.  I challenge you to give up a specialty coffee or two each week, and instead donate that money to my fundraiser.  Help me to help not only myself, but all of the others that also are living their lives one day at a time to make it through.  You can make a secure donation, on my GoFundMe page.  The link to it is on the right hand sidebar of my blog, but I'll also list a link to it as well: Donation Page.