So, I won't go too much into detail at this point but enough to say that I have a very rare muscular condition that causes me extreme pain in the legs.
There's no cure for it or even treatment. Because of this I couldn't finish my career and I'm unable to work.
I'm Puerto Rican, living in Spain, and I've been waiting years for a definitive diagnosis so I can apply for economical help.
With this first post I'd like to share how hard it is to live in constant pain. And worse how people around me don't understand. They always complain because I complain of the pain, it limits me in order to do anything and, not only do they don't help, but actually criticize me for being "lazy" when it's just that the pain or fatigue don't let me function.
Do any of you have a similar situation that can share It would help. Thanks
Living with a painful condition
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disneyboy20022
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Re: Living with a painful condition
I understand that with my herniated disc back issues. One friend tagged my on Facebook with a lawn chair. I asked this friend why'd you tag me? This friend said oh because you complain of back pain all the time. Now, I don't think this friend had any malice intentions nor does anyone when it comes to making comments like that. Yet, it did irritate me.
I was actually in play back in December and I had to get an epidural few days before the play. My friends told me that the cast will walk around the block in a Christmas parade. I said that I couldn't do it because I said I needed to rest so my epidural could work for the theatrical performance I was going to put on. However, my two friends said it's just a block you'll live. Another offered a wheel chair, but I said no. If I was going to make this epidural work, I COULDN'T do either of those and if I chose to, I'd be basically ruining any help the epidural would give me. The director of the play already approved for me to stay back in the building where the play was, but yeah I understand exactly what you're experiencing. The problem is, pain like what I have and what you have is an invisible disability. No one can see any sign that I'm in pain, so they judge me. One time my back got a hell of a lot worse and I had to use a wheel chair. I was treated very differently then. I remember I was on a tour of a college and I had to eat in a cafeteria. I was wheeling around getting food, when someone offered to hold my tray of food and brought it to the table I was going to eat it. Even when I use to use a cane at times people would treat me different. It's very unfortunate that people must see some psychical contraption in order to realize someone is in pain to walk etc. So just know that you're not alone about this.
It's because pain like you have is an invisble disablity. No one can see it so they just take jud
I was actually in play back in December and I had to get an epidural few days before the play. My friends told me that the cast will walk around the block in a Christmas parade. I said that I couldn't do it because I said I needed to rest so my epidural could work for the theatrical performance I was going to put on. However, my two friends said it's just a block you'll live. Another offered a wheel chair, but I said no. If I was going to make this epidural work, I COULDN'T do either of those and if I chose to, I'd be basically ruining any help the epidural would give me. The director of the play already approved for me to stay back in the building where the play was, but yeah I understand exactly what you're experiencing. The problem is, pain like what I have and what you have is an invisible disability. No one can see any sign that I'm in pain, so they judge me. One time my back got a hell of a lot worse and I had to use a wheel chair. I was treated very differently then. I remember I was on a tour of a college and I had to eat in a cafeteria. I was wheeling around getting food, when someone offered to hold my tray of food and brought it to the table I was going to eat it. Even when I use to use a cane at times people would treat me different. It's very unfortunate that people must see some psychical contraption in order to realize someone is in pain to walk etc. So just know that you're not alone about this.
It's because pain like you have is an invisble disablity. No one can see it so they just take jud
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Re: Living with a painful condition
Thanks for sharing.
Because of the pain I found out that one of the best things I can do is distract myself. That's one of the main reasons I will always be using the Internet, reading comics or watching series and/or movies. Something that, according to a psychologist I went to, was actually ideal. Yet any time this friend sees me like that he'd say something about it or complain.
Again, the pain is the reason I'm so limited. For instance, I can't do house work. I can cook for example but then I can't wash the dishes right away. Or I can broom and/or clean a room yet I can't do anything else. I have to sit or lay down. Still, this friend will comment or say something negative about it.
... funny enough his mom has a painful condition in the arms. Yet in her case he understands or he'll help her.
Because of the pain I found out that one of the best things I can do is distract myself. That's one of the main reasons I will always be using the Internet, reading comics or watching series and/or movies. Something that, according to a psychologist I went to, was actually ideal. Yet any time this friend sees me like that he'd say something about it or complain.
Again, the pain is the reason I'm so limited. For instance, I can't do house work. I can cook for example but then I can't wash the dishes right away. Or I can broom and/or clean a room yet I can't do anything else. I have to sit or lay down. Still, this friend will comment or say something negative about it.
... funny enough his mom has a painful condition in the arms. Yet in her case he understands or he'll help her.