Living with Chronic Fatigue Syndrome (ME/CFS)


Hi today’s video coming from the floor of my bedroom. I have a medical condition – CFS – which Is called Chronic Fatigue Syndrome. It doesn’t sound so bad, I know, being tired all the time, but it’s being it’s being tired, and sleep doesn’t- it doesn’t make it better. And when you’re tired, you get this brain fog and you can’t remember things. I wanted to make the video when I have the brain fog to show you, to explain. So I try. I try. If it’s slow. So CFS or (S?) ME They’re the same… same thing. Some people think that they’re different, but no one really knows what either of them are, so how can they be different if they’re the same? So what is it? So your muscles are in pain, and Your brain and your spinal cord- they get inflamed. So it’s like a pressure in your head, and it makes you thinking really, really slow. And you can’t process things. You can’t, um… If someone throws a ball at you, It’s going to hit you. You can see (mumbles) where you’re looking at them. You don’t know that they threw the ball til After it’s hit you. It’s like being drunk. Like really, really drunk. Tired And your muscles hurt, like hurt really badly. And you are tired all the time, but it is episodic so Sometimes I am a bit better. I could work. I could have a little walk maybe with my dog, and I can go to a party or (mumbles) I think I may have made these into cows. Now they’re kissing cows. Because I went to the party, because I was working really hard, focused. Then the next, day it’s been bad, or Maybe two or three days, and sleeping doesn’t make it better. I am so much better (than) when I first had CFs. I was 17. I was already in hospital because I was ill with my my normal disability which is a really, like, weird thing, no? Having a normal disability? And then, like, an extra one. And then she’s deaf, too. So, i’m determined. So I was seventeen, and I had a (???), and it went wrong, and all my spinal shit If you have a (???) and it goes wrong, and it stays in your body, it’s just like it’s in your body, but the fluid is just gone from your brain. The doctors think that is what gave me this thing, but nobody knows. One year and a half, I was in bed, and I couldn’t open my eyes because it hurt so much. I couldn’t have any sound near me- no sound. At all. Which, I know, I know I’m deaf. This is quite comic. Even- even a touch, a gentle touch- that was too much. That hurt. Oof. You could touch my bed, and it hurt me so much I would want to scream, but I couldn’t scream because the screaming hurt more. And I couldn’t lift my head because whenever I lifted my head, all of the fluid would go down, and then there wasn’t fluid in my brain. And then I would vomit everywhere. And just the pain all over my head It was so bad. And I know just pass out. and it was really slow recovering from that. It was lonely. Everything hurts and you are still awake. But your mind is so slow, and sometimes I would come back a bit, but I’m still trapped, and this body, it hurts. And I was kind of aware of what was going on. I didn’t speak. cause cause it hurt. And my My family had to carry me everywhere because I didn’t stand up. I couldn’t walk. So in the car, I had to lie in the back with my brother. He’s such a sweet boy. I would put my head on his lap and lie down And we would drive. Then they’d have to carry me flat. When I got ill, I was in the middle of my my exams. Bad, bad. Don’t get ill when you’ve got exams. And so I couldn’t go to my classes because I couldn’t sit up, and I couldn’t read, and I couldn’t listen. And I took all of my exams. I took them all in a room in the dark. Lie down. And there was this really, really nice lady who wrote down everything that I said and I led her with my eyes closed, and I just walked I just dictated all my exams. And I hadn’t been to school for for a year. I was in the middle of my A-Levels. I took all of those exams, and I passed, and I got A’S and B’S, and I wasn’t as happy as I should have, cause I wanted better, but That’s just… that’s a bit crazy. And that was hard, and getting to university took me four years. Today, sitting on the floor is amazing. That’s so good. So now, I’m a bit weak. I can’t walk the long distance. Sometimes I get this thing that we call “ragdoll” in the evenings. It’s like it being your body is asleep. You’re trapped in there. There’s this thick, thick wall , and you’re trying to break out. And Tridia(?) can see. So my eyes kind of go like (gestures), and she has to help me get up, up the stairs. And undressing is hard. It’s like a drunk person. They’re(?) never mean. I have to be careful because I don’t want that to happen. I need to not do a lot of things. I need to be careful and do one thing, end the day, and then I need to rest. My friends- the all understand. I’m sorry that I can’t go to all of the parties, and I’m sorry that I sometimes have to go home really early, and I am sorry Walter that I can’t take you for longer walks. And I’m sorry when sometimes I get messages I just, I can’t… I can’t reply In my life with Chronic Fatigue Syndrome, that’s what it’s like for me. I hope I helped to explain a little bit.

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