Terry

is creating On Being Invisible - The Diary of a Fibromyalgia Warrior

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patrons
On Being Invisible

We call ourselves warriors. I am a warrior. It's a title I never wanted; one I never imagined bearing. Up until seven years ago, I didn't know this disease existed. Doctors call it a condition. They say it can't kill you so it's not a disease. They're wrong.

People die from this illness all the time, because they can't stand living with it. So, yeah, fibromyalgia is a disease. It progresses. You travel through stages gradually getting worse. Some warriors are stronger than others. Some just can't take the pain, the exhaustion, the isolation. Some just want to be believed by one person. Maybe even by someone they love. 

This is my story. I see it echoed in support groups on Facebook over and over. Strangers revealing deep emotional pain, asking questions of each other, and loving one another,
because no one else but a fibro warrior can ever understand the depth of our grieving and our pain.

Following my diary won't be the easiest thing you'll ever do. I'll be showing you the unvarnished truth. Sometimes I'll include videos. You are going to see me in bed at 2 in the afternoon a complete mess, because showering is painful. You're going to see me on my better days working on the crafts I try to sell, and you're going to watch me in a seizure because - well because that's my life now.

My prayer in doing this is to open your eyes. Let you be a fly on the wall. If you are a warrior you'll be looking in the mirror. If you love a warrior maybe you'll learn some things. If you know a fibromyalgia warrior, and you've hurt them or even abandoned them, maybe you'll see the error of your ways and make it right.

Warriors need to be believed. We need to be validated. We need to be loved in spite of our chronic invisible illness.

Now down to business. I am creating this Patreon blog for two reasons. The first is to educate you about life with a chronic invisible illness. The second reason is to help fund my increasingly expensive care. At the very tip top of my list is to have my dog Holly trained to take care of me when I have a seizure. She is doing that instinctively but needs to be trained to bring me my medicine or my phone, or to fetch my husband. Once that is done a motorized wheelchair would be heaven. It would be wonderful to get out of the house to get back into the world. I view this blog as a part time job to help pay for therapy and medicine, er visits, ambulance rides. It goes on and on. Some if not all of this will open up to me with your monthly subscription.

In exchange I will teach you about life with an invisible chronic illness. I was an English teacher in my former life. So health permitting I will post two articles a month. I will also chat with you about my days as I would when messaging a friend. You will live my life and by proxy thousands of others. I pray it makes you a better spouse, partner, child, parent, doctor, nurse, EMT, pastor, friend to someone who desperately needs you.

Understanding our lives could help save a life or at the very least help make life more worthwhile.

Now I'm not tech savvy and it's going to take me awhile to figure out all the features available to me. But, I do know how to share my heart and you'll get that with every post. Purple and purple butterflies are the symbols of fibro. You'll notice I'll sign off with purple hearts after each post. Know that when I do, I am sending you my love for caring about people like me. 💜💜💜

P.S. I have a very small group of friends on Facebook and don't follow Twitter or any of that other stuff so I need a favor! Please share with everyone you know and every group you belong to. The only way this can work is for thousands of good people to see it. So share my story and my link everywhere. Thanks. 💜
On Being Invisible

We call ourselves warriors. I am a warrior. It's a title I never wanted; one I never imagined bearing. Up until seven years ago, I didn't know this disease existed. Doctors call it a condition. They say it can't kill you so it's not a disease. They're wrong.

People die from this illness all the time, because they can't stand living with it. So, yeah, fibromyalgia is a disease. It progresses. You travel through stages gradually getting worse. Some warriors are stronger than others. Some just can't take the pain, the exhaustion, the isolation. Some just want to be believed by one person. Maybe even by someone they love. 

This is my story. I see it echoed in support groups on Facebook over and over. Strangers revealing deep emotional pain, asking questions of each other, and loving one another,
because no one else but a fibro warrior can ever understand the depth of our grieving and our pain.

Following my diary won't be the easiest thing you'll ever do. I'll be showing you the unvarnished truth. Sometimes I'll include videos. You are going to see me in bed at 2 in the afternoon a complete mess, because showering is painful. You're going to see me on my better days working on the crafts I try to sell, and you're going to watch me in a seizure because - well because that's my life now.

My prayer in doing this is to open your eyes. Let you be a fly on the wall. If you are a warrior you'll be looking in the mirror. If you love a warrior maybe you'll learn some things. If you know a fibromyalgia warrior, and you've hurt them or even abandoned them, maybe you'll see the error of your ways and make it right.

Warriors need to be believed. We need to be validated. We need to be loved in spite of our chronic invisible illness.

Now down to business. I am creating this Patreon blog for two reasons. The first is to educate you about life with a chronic invisible illness. The second reason is to help fund my increasingly expensive care. At the very tip top of my list is to have my dog Holly trained to take care of me when I have a seizure. She is doing that instinctively but needs to be trained to bring me my medicine or my phone, or to fetch my husband. Once that is done a motorized wheelchair would be heaven. It would be wonderful to get out of the house to get back into the world. I view this blog as a part time job to help pay for therapy and medicine, er visits, ambulance rides. It goes on and on. Some if not all of this will open up to me with your monthly subscription.

In exchange I will teach you about life with an invisible chronic illness. I was an English teacher in my former life. So health permitting I will post two articles a month. I will also chat with you about my days as I would when messaging a friend. You will live my life and by proxy thousands of others. I pray it makes you a better spouse, partner, child, parent, doctor, nurse, EMT, pastor, friend to someone who desperately needs you.

Understanding our lives could help save a life or at the very least help make life more worthwhile.

Now I'm not tech savvy and it's going to take me awhile to figure out all the features available to me. But, I do know how to share my heart and you'll get that with every post. Purple and purple butterflies are the symbols of fibro. You'll notice I'll sign off with purple hearts after each post. Know that when I do, I am sending you my love for caring about people like me. 💜💜💜

P.S. I have a very small group of friends on Facebook and don't follow Twitter or any of that other stuff so I need a favor! Please share with everyone you know and every group you belong to. The only way this can work is for thousands of good people to see it. So share my story and my link everywhere. Thanks. 💜

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