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.
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