INTERNATIONAL M.E./C.F.S. AWARENESS DAY
This week is International M.E. Awareness Week, and more specifically, today is International M.E. Awareness Day. I don't talk about my illness too often. I live with it, and the internet is the only place I can put it aside and be me.
That doesn't mean it doesn't limit me online, though: I can't stay on the computer for hours at a time. Some days, I can't read the words on the screen. I can't follow long conversations in IMs or on Twitter. Reading fanfic is sometimes really hard, because the words jumble together and it takes me three tries to sort it out in my mind. Typing can be hard, because my wrists hurt or simply because my fingers don't want to work properly. I have to turn the brightness down, and not have the sound up loud, and sometimes I space out so much I forget that I'm in the middle of something, or that I have a conversation window open (and if that's ever happened while I'm talking to you, I apologise). I always access the internet from my bed, and I always have my laptop on a table because I can't have its weight on my legs.
But I don't talk about it. I don't want to. I don't want people feeling sorry for me, or accidentally asking the sort of question that makes me really upset, or, through no fault of their own, reminding me that there is so little knowledge about this illness that affects hundreds of thousands of people in the UK alone. Because there is so little knowledge. It's an invisible illness, and so when I come online, I make it invisible.
M.E. ruined my life. It ruined my friendships and my hobbies and my confidence and my school life and my social skills. For a year, almost to the day, I couldn't walk. I couldn't even stand up. My legs were in excruciating pain all the time and I needed a wheelchair to even get out of bed to go to the other side of the room. I pretty much didn't get out of bed. I couldn't stand the light, and even having the lights on the dimmest they would go hurt my eyes. I couldn't stand loud noises, or read, or have conversations, or eat properly. There were no doctors who knew what to do. They didn't understand, because it's such an unknown illness. I've seen countless medical professionals who I've had to tell about my illness, when it's them that is supposed to be helping me. In my town, the only place they could refer me to once I hit 16 was the mental health clinic, because there are no adolescent services. M.E. isn't a psychological illness. It's neurological and it's real and it ruins lives.
I've met some wonderful people through having M.E. that I never would have known if I hadn't become ill, but every day, it limits me. I hide on the internet, because I don't want to remember that I'm so ill. But I am. So many other people out there like me are. They're all amazingly strong and I admire every single person who is living or has lived through this illness.
It's M.E. Awareness Day today. Please, just take five minutes to Google the illness. Take five minutes to think of all the people who are suffering, who can't live a normal life. Take five minutes to think of the last time you were so ill you couldn't get out of bed, double that feeling, and you still don't have what we live with every day. Ask me any questions you like in the comments, and I'll do my best to answer them.
It's an invisible illness, but by posting things like this and raising awareness, we are not invisible.
Edit: Adding a link to a couple of videos made by my friends about today. Please watch them: Daisy and Chlay
That doesn't mean it doesn't limit me online, though: I can't stay on the computer for hours at a time. Some days, I can't read the words on the screen. I can't follow long conversations in IMs or on Twitter. Reading fanfic is sometimes really hard, because the words jumble together and it takes me three tries to sort it out in my mind. Typing can be hard, because my wrists hurt or simply because my fingers don't want to work properly. I have to turn the brightness down, and not have the sound up loud, and sometimes I space out so much I forget that I'm in the middle of something, or that I have a conversation window open (and if that's ever happened while I'm talking to you, I apologise). I always access the internet from my bed, and I always have my laptop on a table because I can't have its weight on my legs.
But I don't talk about it. I don't want to. I don't want people feeling sorry for me, or accidentally asking the sort of question that makes me really upset, or, through no fault of their own, reminding me that there is so little knowledge about this illness that affects hundreds of thousands of people in the UK alone. Because there is so little knowledge. It's an invisible illness, and so when I come online, I make it invisible.
M.E. ruined my life. It ruined my friendships and my hobbies and my confidence and my school life and my social skills. For a year, almost to the day, I couldn't walk. I couldn't even stand up. My legs were in excruciating pain all the time and I needed a wheelchair to even get out of bed to go to the other side of the room. I pretty much didn't get out of bed. I couldn't stand the light, and even having the lights on the dimmest they would go hurt my eyes. I couldn't stand loud noises, or read, or have conversations, or eat properly. There were no doctors who knew what to do. They didn't understand, because it's such an unknown illness. I've seen countless medical professionals who I've had to tell about my illness, when it's them that is supposed to be helping me. In my town, the only place they could refer me to once I hit 16 was the mental health clinic, because there are no adolescent services. M.E. isn't a psychological illness. It's neurological and it's real and it ruins lives.
I've met some wonderful people through having M.E. that I never would have known if I hadn't become ill, but every day, it limits me. I hide on the internet, because I don't want to remember that I'm so ill. But I am. So many other people out there like me are. They're all amazingly strong and I admire every single person who is living or has lived through this illness.
It's M.E. Awareness Day today. Please, just take five minutes to Google the illness. Take five minutes to think of all the people who are suffering, who can't live a normal life. Take five minutes to think of the last time you were so ill you couldn't get out of bed, double that feeling, and you still don't have what we live with every day. Ask me any questions you like in the comments, and I'll do my best to answer them.
It's an invisible illness, but by posting things like this and raising awareness, we are not invisible.
Edit: Adding a link to a couple of videos made by my friends about today. Please watch them: Daisy and Chlay