Surviving me
I'm not posting this to garner sympathy or whatever, I'm just doing this because it helps me arrange my thoughts and sort out my feelings, so here goes.
***
I can tell my EDS is worsening. My hands are weaker, my back gets f-ed up easier now.
The thing with HEDS (Ehlers Danlos Syndrome, Hypermobility Type) is everyday actions can really hurt us. Gripping forks, opening jars, pulling socks off my feet - these can give me sprains in my wrist, or the back of my hand. Opening stubborn jars are the worst, by the way. It's more painful for me to open a jar than it is to stub my toe and lose a toenail. This isn't hyperbole. I'm serious.
My hands are getting very weak. It really scares me, because I'm a writer. I'm trying to not overwork them, but time I'm spending on writing has been greatly minimised because of the pain. Also, I'm experiencing tremors. I'm going to monitor the situation; if this goes on I'm going to have to see a doctor or gyroball the heck out of my right hand. I'm seriously considering splints, except I don't know which doctor to see and how I'm going to get my hands on them (although they're supposed to be on my hands, lawl, geddit? Geddit?). Splints are expensive, too.
If I fall asleep in the car, I will wake up with a lot of pain. If I do want to sleep in the car, I need a pillow behind my back and around my neck - and even these have to be the exact angle, otherwise I could hurt myself.
I sometimes turn around to check if I stepped on something and something between my shoulder blades sends a sharp pain into my neck. The back of my ear, the back of the 'shell', also tends to hurt a lot if I have shoulder aches, which is often. Doorknobs are my worst enemy because they make doors so hard to open. My sternum and ribs make weird noises when I stretch, and very often it hurts so much to breathe. My scalp - yes, my scalp - actually hurts after I carry a heavy backpack.
The list goes on.
***
I've lived with pain every day of my life for the longest time, but it's only gotten really challenging in recent years.
You know me through writing, so this might be easy for you to digest; it might be easy for you to empathise. But if you knew me in real life, you may not be able to accept that I am sick. You might question the authenticity of my pain. You might be wondering what the hell I'm talking about, because I look fine.
I'm not.
Again, I'm okay with not being fine; I'm not looking for sympathy. But telling me that I'm okay, or that I'm making a big deal out of this, or that I'm not as sick as the others - it means you're denying that I'm not okay, and that's not cool.
I was reading some coming out stories, and some gay people mentioned how, after coming out to their parents, their gayness was ignored - like, their parents would still try to set them up with members of the opposite sex, or gripe thusly: "Why don't you have a girlfriend/boyfriend?" Sometimes this would happen even if the gay person was in a relationship.
It's not the same, but the whole ignoring of information thing, I really get. Common responses: "I've known you x number of years, why didn't you say anything?" "I'm sorry, I don't see how you're sick because you look fine?" "It doesn't look like a serious disease if it means you just have stretchy skin and loose joints."
Because it's not just that; stretchy doesn't stop at skin - it's all of me. All my organs are stretchy. I can't expel phlegm very well because of this stretchiness, which means when I have an infection the germs sit in my body and have an orgy. And don't get me started on my bowel.
Loose joints mean I have to over-compensate for what you can do in a cinch - like opening doorknobs.
I feel that people just miss the point sometimes.
***
I'm not all doom and gloom; quite the opposite, in fact. I don't like to appear sick, which might not work to my advantage because the 'but you don't look sick!' comments just increase. Think about it, though - if you live with chronic pain, would you really want to let it show in every aspect of your life, every single day? FYI, you don't get a break from chronic pain. The good days are days you wake up with less pain. There is no such thing as 'no pain'.
If I were to accurately depict my illness in my behaviours and words, I would have no friends. My husband's life would be hell. I would be a really sad, really damaged person.
I face my disease the way I do because I made the choice to not be sad about it. It's a part of me. When I first got diagnosed, I said on Facebook: "I have a disease! It's like my pet. My very own disease." And then I went on to joke about it.
Someone I consider a friend took offence. He said that I wasn't respecting people who actually have serious diseases, who are dying from said diseases.
I chose not to argue with him. Essentially he was saying my disease wasn't serious; he was saying our disease wasn't serious. 'Our' because there's a 'we'; it's a rare disease, but EDS has thousands and thousands of sufferers, and we are a collective.
I put it that way - that it was a pet - because I felt that I had to. I had a choice as to how I should break the news to my friends on Facebook, and I chose to do it light-heartedly. A lot of people saw my point and gave me props for treating it positively, but I will always remember how that someone took offence, and how he made me feel bad about myself, how he made me feel inferior, for suffering. For not suffering enough, essentially.
***
Understanding this condition, compounded with going through my miscarriage, has made me a really different person. I now know how much it hurts to not be understood, to be denied validation. I know how the people you think are on your side end up against you, and how you have to let it go because they really don't know better, and how you can only pray that someday they do. I know what it feels like to have to deal with something alone - even with the support of your loved ones, there's only so far they can accompany you on your journey, especially since this pain is something they cannot feel. I know what real sadness feels like.
And I think I'm a better person for it.
***
PS. Some people ask me how I still can dance with my illness. There are a lot of dancers with EDS, by the way, and we all approach dance differently. Just because we have limitations doesn't mean we should deprive ourselves of something we can enjoy; we should be able to enjoy it as much as we can within those limitations!
That said, I don't dance because I enjoy it. I dance because I have to; it gives me more stability, more muscles to support my condemned joints. But sometimes things don't go to well and I still hurt myself. I have a bit of a sticky shoulder I managed to eff up swimming the breaststroke. Award for most unlikely way to hurt yourself. I posted about it in the EDS forum on Facebook and some people said the same thing happened to them. But most of us are like ¯\_(ツ)_/¯ , because we can only work around it; we don't want to stop swimming :)
***
I can tell my EDS is worsening. My hands are weaker, my back gets f-ed up easier now.
The thing with HEDS (Ehlers Danlos Syndrome, Hypermobility Type) is everyday actions can really hurt us. Gripping forks, opening jars, pulling socks off my feet - these can give me sprains in my wrist, or the back of my hand. Opening stubborn jars are the worst, by the way. It's more painful for me to open a jar than it is to stub my toe and lose a toenail. This isn't hyperbole. I'm serious.
My hands are getting very weak. It really scares me, because I'm a writer. I'm trying to not overwork them, but time I'm spending on writing has been greatly minimised because of the pain. Also, I'm experiencing tremors. I'm going to monitor the situation; if this goes on I'm going to have to see a doctor or gyroball the heck out of my right hand. I'm seriously considering splints, except I don't know which doctor to see and how I'm going to get my hands on them (although they're supposed to be on my hands, lawl, geddit? Geddit?). Splints are expensive, too.
If I fall asleep in the car, I will wake up with a lot of pain. If I do want to sleep in the car, I need a pillow behind my back and around my neck - and even these have to be the exact angle, otherwise I could hurt myself.
I sometimes turn around to check if I stepped on something and something between my shoulder blades sends a sharp pain into my neck. The back of my ear, the back of the 'shell', also tends to hurt a lot if I have shoulder aches, which is often. Doorknobs are my worst enemy because they make doors so hard to open. My sternum and ribs make weird noises when I stretch, and very often it hurts so much to breathe. My scalp - yes, my scalp - actually hurts after I carry a heavy backpack.
The list goes on.
***
I've lived with pain every day of my life for the longest time, but it's only gotten really challenging in recent years.
You know me through writing, so this might be easy for you to digest; it might be easy for you to empathise. But if you knew me in real life, you may not be able to accept that I am sick. You might question the authenticity of my pain. You might be wondering what the hell I'm talking about, because I look fine.
I'm not.
Again, I'm okay with not being fine; I'm not looking for sympathy. But telling me that I'm okay, or that I'm making a big deal out of this, or that I'm not as sick as the others - it means you're denying that I'm not okay, and that's not cool.
I was reading some coming out stories, and some gay people mentioned how, after coming out to their parents, their gayness was ignored - like, their parents would still try to set them up with members of the opposite sex, or gripe thusly: "Why don't you have a girlfriend/boyfriend?" Sometimes this would happen even if the gay person was in a relationship.
It's not the same, but the whole ignoring of information thing, I really get. Common responses: "I've known you x number of years, why didn't you say anything?" "I'm sorry, I don't see how you're sick because you look fine?" "It doesn't look like a serious disease if it means you just have stretchy skin and loose joints."
Because it's not just that; stretchy doesn't stop at skin - it's all of me. All my organs are stretchy. I can't expel phlegm very well because of this stretchiness, which means when I have an infection the germs sit in my body and have an orgy. And don't get me started on my bowel.
Loose joints mean I have to over-compensate for what you can do in a cinch - like opening doorknobs.
I feel that people just miss the point sometimes.
***
I'm not all doom and gloom; quite the opposite, in fact. I don't like to appear sick, which might not work to my advantage because the 'but you don't look sick!' comments just increase. Think about it, though - if you live with chronic pain, would you really want to let it show in every aspect of your life, every single day? FYI, you don't get a break from chronic pain. The good days are days you wake up with less pain. There is no such thing as 'no pain'.
If I were to accurately depict my illness in my behaviours and words, I would have no friends. My husband's life would be hell. I would be a really sad, really damaged person.
I face my disease the way I do because I made the choice to not be sad about it. It's a part of me. When I first got diagnosed, I said on Facebook: "I have a disease! It's like my pet. My very own disease." And then I went on to joke about it.
Someone I consider a friend took offence. He said that I wasn't respecting people who actually have serious diseases, who are dying from said diseases.
I chose not to argue with him. Essentially he was saying my disease wasn't serious; he was saying our disease wasn't serious. 'Our' because there's a 'we'; it's a rare disease, but EDS has thousands and thousands of sufferers, and we are a collective.
I put it that way - that it was a pet - because I felt that I had to. I had a choice as to how I should break the news to my friends on Facebook, and I chose to do it light-heartedly. A lot of people saw my point and gave me props for treating it positively, but I will always remember how that someone took offence, and how he made me feel bad about myself, how he made me feel inferior, for suffering. For not suffering enough, essentially.
***
Understanding this condition, compounded with going through my miscarriage, has made me a really different person. I now know how much it hurts to not be understood, to be denied validation. I know how the people you think are on your side end up against you, and how you have to let it go because they really don't know better, and how you can only pray that someday they do. I know what it feels like to have to deal with something alone - even with the support of your loved ones, there's only so far they can accompany you on your journey, especially since this pain is something they cannot feel. I know what real sadness feels like.
And I think I'm a better person for it.
***
PS. Some people ask me how I still can dance with my illness. There are a lot of dancers with EDS, by the way, and we all approach dance differently. Just because we have limitations doesn't mean we should deprive ourselves of something we can enjoy; we should be able to enjoy it as much as we can within those limitations!
That said, I don't dance because I enjoy it. I dance because I have to; it gives me more stability, more muscles to support my condemned joints. But sometimes things don't go to well and I still hurt myself. I have a bit of a sticky shoulder I managed to eff up swimming the breaststroke. Award for most unlikely way to hurt yourself. I posted about it in the EDS forum on Facebook and some people said the same thing happened to them. But most of us are like ¯\_(ツ)_/¯ , because we can only work around it; we don't want to stop swimming :)