Okay, I just have to get this out of my mouth. Or else I go crazy, so please excuse all this personal ranting.
I am sick of how people don’t take me seriously. I am hypermobile and have fybromyalgia, and people just don’t seem to get it. I need help some days or company, because of the pain the fybromyalgia causes me. But because it is so fluctuating and invisible this is what I get to hear.
"Everyone is a bit tired once in a while”
I am not a bit tired, I am physically and mentally exhausted. This is not being tired, because I stayed up late and woke up early. This is every day life for me. I have troubles falling asleep, because I have this pain all over my body. And when I do finally fall asleep I wake up multiple times at night, uncomfortable with pain and the process of trying to sleep for a bit starts again. I can’t concentrate and am very forgetful, because the lack of sleep I have. So please stop telling me that ”everyone is a bit tired once in a while” and that it is not an excuse
"You isolate yourself”
No I don’t. I love company, please visit me more often. However people always want to hang out at bars or their place which requires a long bike ride/bus ride. That is just to exhausting/painful for me. I can’t stand a whole night/sit on an uncomfortable bar-stool. I need a good seat, maybe even the option to lie down if its all to much for me.
”You don’t look sick, so stop making excuses”
Those are the times I wish I was dealing with a broken leg or in a wheelchair, so people could see you are in pain. Fybromyalgia is invisible, so people assume because you look okay, you are okay. But really I am not, my body is aching with pain everyday. All over. My back, hands and knees are most affected by this. So excuse me that I do not want to bend over to vacuum clean or crawl on my knees.
"Fybromyalgia is not an excuse to be lazy and stop doing exercise”
People who say this hurt me the most. Because before I heard I had fybro, I wanted to pick up hiphop dancing. Now they said I better not, not because I will damage something, but because I will probably spend the next three days in bed with a lot of pain. I can’t exhaust my body to much, so the only thing my doctor says I can do is a 30 minute walk or a short yoga session and well frankly I get bored doing that. So I am still in search of the perfect sport, but it is hard when everything is to ”heavy to handle”
”Yesterday you could do X, why not today.”
Fybro is very fluctuating and while one day I may be doing fine on a girls night out and even dance a bit. The next day my body will probably be really tired and painful from doing that. So I like to keep such heavy activities to a minimum, also it fluctuates on its own a lot already. Some days I don’t even dress myself, because getting out of bed is too painful, while the next I feel fine and go for a jog..
"I have a relative/friend with Fybro and they say…."
Sometimes people mean well when giving me an advice that said relative/friend has tried, but Fybro is different in everybody. That your friend can still dance is great for him/her, but it doesn’t work out for me. So please stop doing this. I read about people with Fybro that are in a wheelchair and had to stop studying. You don’t see me going around with ”I have Fybro and can still study, so you just have to try harder”
Well that is all I have to say about how people’s reactions towards my fybro annoy me. Now on to the hybermobility. Which I will keep short.
Yes I am hybermobile, no this does not mean I am:
A) Your personal freakshow that will do some cheap flexible parlor tricks when you ask for it. Because it is not cool/gross, it is annoying and sometimes even painful
B) Lying about hypermobility, because I can’t do the things that contortionists can do. I overstretch my limbs, doesn’t mean I can knot myself into a swan or something silly like that.
C) So awesome, because I am so flexible. I am actually concerned about being hypermobile, because in the long run you have a higher chance at arthritis and broken bone marrow.