Im tired of people just not understanding! It makes me so upset sometimes, and I dont expect you to really understand unless you go through what I do, but you can at least be a little understanding of certain things, I mean is that a lot to ask?
Like today my mom was going to the store and I asked if I could go, and she said yes, and I asked well can I bring my wheelchair? Her reply was, seriously why cant you just walk? You just went to the store with your dad and walked. Then she goes on and on yelling with my dad about it, because I walked with him but I wont with her! I said never mind I wont go, or ill just sit in the car because I dont wanna walk but I wanna get out of the house. And my dad goes theres nothing in that store you wanna look at? Ummm yeah there is I would love to go in there but I dont want to walk, because its really hard for me to walk and it causes a lot of extra pain and makes me feel worse.
And then other times when I ask if I can bring my wheelchair she just rolls her eyes and grunts and say whatever I guess, if you have to!
Does she not realize how much it upsets me? And its not like I want to be in a wheelchair, it took me a long time to accept it, for a long time I was unable to walk and was in a bed all day, everyday, because I did not want to go in public in a wheelchair.
Now I have finally accepted it, and I dont care if people stare or if they look away when they see me coming, because at least I dont have to feel worse than I already do, and I can have a better life.
My friends are a whole other story. They really do not understand, which I dont expect them to really understand at all because they dont know anything about the diseases I have or anything. But what really gets me is when they get mad, and try and convince me to do something I cant! And it also makes me depressed because I cant do things I wish I could.
Like for instance my best friends always try to get me to go swimming and argue with me all the time and I once gave in and said I will go but wont get in but, they made me get it and I didnt even have a swimsuit! (but no one really did)
I have tried to explain to them I cant swim because it makes my RSD worse, unless its a heated pool, than it wont make it worse but it still hurts me a lot, due to the pressure of water.
I try to get them to explain I have showed them my Imagine RSD videos on youtube and everything and I have shown them articles and they still dont understand, or they just dont want to!
The biggest one of all though that gets me, is when a doctor does not understand!
I dont know how many times I have been told by doctors I just need to learn to live with it and suck it up. I was even told by my ex-pediatrician, "Well I have aches and pains all the time, you just have to learn to live with it."
Umm you have aches and pains, you dont have RSD, this is not just a simple ache, this feels like someone poured gasoline all over your body and lit a match, and its 24/7! And dont even get me started with doctors telling me Im faking it, when a doctor says anything like this I want nothing more but to punch them in the face!
I do want to say though I have one person in my life, that doesnt have RSD, who actually understands, he is a amazing friend, even though I have never actually met him! His name is Neil, he is from the true life episode, I have a traumatic brain injury. I met him online and we started talking, and he always knows what to say and how to make me feel better. When I was in Dallas Childrens Hospital, doing there intensive therapy program for chronic pain, which by the way those doctors did not understand at all, and told me I just had to learn to live with it! Well you know what Neil told me, "Do I need to come down there and show them just a ounce of the pain you are feeling, and maybe they can understand maybe a little?" It made me smile and stopped the tears. :)
He truly is a amazing friend, and it surprises me that he is the one who understands the most, even though I have never really met him, and never really told him much about the disease. If it wasnt for him I dont know what I would do! I think I would be really depressed!, love you Neil! :)
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