My May 12th Entry
[It's a day late because I'd forgotten I'd done it until now]
I have been trying to think of what I could say that would be different from the last eight years. Every year on May 12th, I write a post, usually containing "The Spoon Theory" and ask you to read that. This year, I am dictating my entry because the pain is bad and I don't know if this flare-up will clear in time to allow me to type it.
So, what am I going to say this year? Well, I could tell you about the level of pain I'm in, but if you read my journal and know me, you know that already. I could tell you about the crushing fatigue, the cramps that twist my legs and hands into unnatural positions and don't let up no matter what you do. I could tell you about the pain killers I have to take every day, but again, most of you already know that. I've made you all as aware as you're going to be to what it's like to live with M.E and Fibromyalgia.
Some of you are all too familiar with that, some of you have the same conditions, others have some different ones as well and all I can really say is, hey world...it HURTS to be us!
This year though, I wrote a song, I'd decided to give it a go and my muse was nice to me and gave me the words and tune and everything. I played it for my friend, Kim because I wasn't happy with the chords I'd chosen but couldn't work out better ones and she transformed it into a beautfiul, poignet song, with help from her husband, Anders. This year, I released that song and have donated 100% of the profits to The Fibroduck Foundation to aid them in their research. Why? I'm tired of hurting, I'm tired of being sick and I want a cure and if they can't give me that, I want to know *why* I hurt and give me a useful treatment. I mean, sure I've seen the YouTube videos of people claiming they were cured and part of me wants to think that people aren't that evil, to pretend they had a disease, found a cure and then wave it in front of the sufferers and say they too can be cured for $199.95 in five easy installments. I *want* to believe that doesn't happen, but the sad part is, it does.
That's why we need research. REAL research into the cause, the treatments and the cure, it may take five years, it may take ten, hell it could take twenty, just tell me that SOMETHING is being done and with The Fibroduck Foundation, I know it is.
So, yeah, read The Spoon Theory>. Educate yourself about what it's like to be us, not just Fibro and M.E sufferers, but people with ANY chronic pain condition. Also, if you feel so inclined, buy the single "It Hurts To Be Me" from iTunes or Amazon. Help a spoonie, help a fibromite, help someone who's hurting so bad it's enough to make you wince in sympathy.
I never dreamt I would release a song one day, nor did I dream I'd release books and have them sell. Both of these dreams are realities. One dream of mine is to live to see a cure, maybe you can help that one come true too.
Thanks for reading.
I have been trying to think of what I could say that would be different from the last eight years. Every year on May 12th, I write a post, usually containing "The Spoon Theory" and ask you to read that. This year, I am dictating my entry because the pain is bad and I don't know if this flare-up will clear in time to allow me to type it.
So, what am I going to say this year? Well, I could tell you about the level of pain I'm in, but if you read my journal and know me, you know that already. I could tell you about the crushing fatigue, the cramps that twist my legs and hands into unnatural positions and don't let up no matter what you do. I could tell you about the pain killers I have to take every day, but again, most of you already know that. I've made you all as aware as you're going to be to what it's like to live with M.E and Fibromyalgia.
Some of you are all too familiar with that, some of you have the same conditions, others have some different ones as well and all I can really say is, hey world...it HURTS to be us!
This year though, I wrote a song, I'd decided to give it a go and my muse was nice to me and gave me the words and tune and everything. I played it for my friend, Kim because I wasn't happy with the chords I'd chosen but couldn't work out better ones and she transformed it into a beautfiul, poignet song, with help from her husband, Anders. This year, I released that song and have donated 100% of the profits to The Fibroduck Foundation to aid them in their research. Why? I'm tired of hurting, I'm tired of being sick and I want a cure and if they can't give me that, I want to know *why* I hurt and give me a useful treatment. I mean, sure I've seen the YouTube videos of people claiming they were cured and part of me wants to think that people aren't that evil, to pretend they had a disease, found a cure and then wave it in front of the sufferers and say they too can be cured for $199.95 in five easy installments. I *want* to believe that doesn't happen, but the sad part is, it does.
That's why we need research. REAL research into the cause, the treatments and the cure, it may take five years, it may take ten, hell it could take twenty, just tell me that SOMETHING is being done and with The Fibroduck Foundation, I know it is.
So, yeah, read The Spoon Theory>. Educate yourself about what it's like to be us, not just Fibro and M.E sufferers, but people with ANY chronic pain condition. Also, if you feel so inclined, buy the single "It Hurts To Be Me" from iTunes or Amazon. Help a spoonie, help a fibromite, help someone who's hurting so bad it's enough to make you wince in sympathy.
I never dreamt I would release a song one day, nor did I dream I'd release books and have them sell. Both of these dreams are realities. One dream of mine is to live to see a cure, maybe you can help that one come true too.
Thanks for reading.