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:
$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.