survivinglife
Forum Replies Created
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Yes, I have a lot of contractures. They hurt a lot, especially in the knees. I had a surgery on my right knee when I was 9, but it didn’t help at all, and it was a lot of pain during the surgery and recovery.
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I play PlayStation 4. I have a monopoly game on there that also has family feud and trivial persuit and scrabble on it and I seriously love it.
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Thank you Kathryn. That does make me feel better.
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I have a custom chair that tilts back. It doesn’t come with a tray but that’s okay. I have a table that is adjustable and we have it at the best height. I love it and can’t live without it. Still my arms are extremely weak. I’ve considered getting the jaco arm but 1). my mom swears I’m not at that stage yet and 2). I’m kinda scared of anything that works on its own but I can’t see their brain. I don’t even like hospital beds but my mom thinks it’ll help me with my swallowing and pain.
I talked to my brother about the online dating thing and he said that it shouldn’t be a problem for my mom to drop me off at the date but I said if I can have someone else do it, I’d rather that cuz who wants their mom to drop them off on a date? Lol. Then I said, “I’d even rather you drop me off. I’ve thought about doing a double date with you that way you’d also be there if anything goes wrong you know? But I understand if you don’t want to do that even if you didn’t live 2 hours away.” And he said he wouldn’t mind doing a double date. So maybe one day I can go on a date. Plus I think I would feel more comfortable with him there cuz I don’t trust anyone as much as I trust him. My brother makes me feel like not only will he not hurt me but he also won’t let anyone else hurt me including me.
Like I said I’m at respit right now and I’m using their tablet right now. That’s how I’m talking to you guys but I’m leaving tomorrow so I might not be able to respond for a couple months. I might come back to respit in September. Thank you guys for helping me so much. I listen to the flash briefings all the time and they make me feel better. Thank you. -
I don’t think I’ve told y’all yet but sma has progressed so freaking much for me now that we’ve only found one chair that actually works for me and that one doesn’t have a tray. And yeah we do have a service provider but she is currently working on getting me a new bed and home health aide.
I can barely even swallow anymore. Even my own spit won’t go down. I’m kinda scared but I’m trying not to think about it and just stay positive.
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Thank you guys. My mom has been trying to get at home health aides or nurses. Is that the same thing? I don’t know but we haven’t had much luck at all. Actually we’ve had zero luck. Right now I’m in a respit home but my time here is almost done. I don’t know what will happen next but I know we’ve had more luck with this place than having a nurse at home. Online dates would probably be best at least at first. But we’d have to meet in person at some point, you know?
I do use the on screen keyboard and actually mine allows me to make it smaller which also helps. But I just can’t reach my arm up to the tablet. I can barely reach my table. The only reason I’m able to be on here right now is because the nurse put my elbow up on the table for me but my moms hate doing that for some reason. Also I can’t find my tablet at home. I’m using the respit place’s tablet.
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Thank you! I’ll definitely check it out!
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I wish I could give some advice, but actually I need some advice on this one too.
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Awe I don’t have a phone at all. Besides I don’t have much luck with electronics. This is my 4th tablet. Lol.
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I’m not sure yet about the being part, but I do notice things differently. I am always observing since that is easier than like being the center of attention at parties and whatnot. And therefore I see things that other people don’t.
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Thank you guys – I mean, gals! Lol. My mom said she looked into toothbrushes for people with cerebral palsy but she doesn’t think any of them would fit in my mouth. Not only do I have a really small mouth, but it barely even opens anymore. Another reason why I struggle so much with brushing my teeth…
I have an Echo Dot but my mom hasn’t set it up for helping with the lights and whatnot yet. It has a hard enough time understanding me too. But I do have fun with it when I’m laying down, which has been a lot lately since I have been struggling so much and I currently have a wound on my buttocks. I can’t do anything else laying down cuz I can’t really move my arms.
What about games? Playing games is a good exercise. What kind of games do you guys like to play?
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Yes ignored! But if they want to talk to me like I’m an adult, then yes please!
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OMG thank you all so much! These were beautiful and very inspiring! And funny. Thank you for being so honest and open. I have had someone take a picture of my butt cuz I wanted to see how the wound was doing but I only saw the wound. Not even my whole butt. But I’m getting a bath tomorrow (pray for me, I hate baths, they hurt so much) so maybe I’ll have my mom take a picture of me naked so I can see.
I don’t hate my body for how it looks necessarily – I don’t love it but I don’t hate it either. I love my eyes and that’s enough to get my mind off of the snake shape of my body and the fact that my stomach sticks out on my side. Plus I don’t really care what people think. I have gone to the park with my brothers a few times without even brushing my hair. Lol. Sometimes I do think “how can anyone fall in love with me? Look at my body” but my brother snaps me out of that pretty quick. He says that someone will love me for my personality and whatnot and they’ll understand that my crazy body and a lot of work comes with the package. He says he loves me and that’s why he hangs out with me when he can even though he might have to take me to the bathroom or reposition me a couple hundred times cuz I’m hurting or just having trouble sitting up on my own. Sometimes he’d even pull a chair into my room so he can hang out with me while I’m laying down. And he says that he won’t always be the only one who does that.
No, I hate my body cuz it won’t leave me alone. I’m always hurting and I’m not exaggerating. And the pain is always BAD. SO BAD. And I can’t do anything about it. I know I’m not the only one who hurts, especially in this community. But this is driving me insane! I currently have three – sorry, four – bandages on my body. And they all hurt extremely bad. AND other things hurt extremely bad too. And I always have to use the bathroom at the worst times.
I’m sorry for complaining so much.
Oh and Losmi, I also have family who are mentally ill. My birth mom, my older brother and my older half brother. And all three have hurt me a lot, physically and emotionally and mentally. It sucks, doesn’t it?
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What pain medicine do you guys take? I forget the one my doctor has me on right now but I can only take a low dose (1/2 a milliliter) cuz if we go higher, I can’t hold my head up and I have accidents in the bed a lot. But this low dose isn’t helping, even though I take it twice a day every day.
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Lol my first thought and choice was to leap from the top of buildings, but after hearing all of the other answers (especially Adam’s) I’d have to go with controlling things with my mind.
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Mike, I don’t think it’s weird SMA prepared you for the pandemic. It definitely prepared me and my family for the pandemic. My mom tells me all the time that focusing on the positive aspects of life helps, and she’s right. It’s just hard to do that sometimes.
Another thing that she says helps me a lot too. I’ve been struggling with a lot of pain lately and certain activities, like taking a bath, hurt more and sometimes hurt me seriously in a way that doesn’t heal for weeks, and therefore I hate those things. I’m actually scared of baths even though my mom is super careful. But my mom said, “Instead of fearing pain, go into each day knowing that you are going to experience some kind of a pain but set a goal for each day. That way you can say, yes this happened that hurt BUT I accomplished THIS today. It doesn’t have to be an insane goal. Maybe something like, I will hold my book open on my own for 20 minutes today while I read.” At first, I didn’t see how that was supposed to help, but I tried it out, and let me tell you, it really does help. It doesn’t take the pain away. It doesn’t fix anything. It just gives me a reason to want to get out of bed every day. It gives me a reason to live each day. So I guess that’s what I cling to each day. That and my brother. My brother is the one thing that has kept me from losing my mind. -
I haven’t watched all of The 100 but what I saw was very engaging. I’m stuck on Supernatural. I can’t stop watching it. Lol
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My favorite day would probably also be Thursday. Lol. Every day is pretty much the same to me, but on Thursdays the new episode of the podcast I listen to comes out. I love the podcast (Experts On Experts with Dax Shepherd, also called Armchair Experts) on Apple Podcasts not only cuz it makes me feel connected, but also cuz instead of pretending like they already know everything, they actually interview people who are experts on certain topics. This week they interviewed an author, which was extremely cool for me. Lol.
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oh thank you!
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we haven’t found one yet I don’t think, but I know my mom wants one. We have an ear one and it doesn’t work real well. That’s a great idea to have them check their temps though! No one is allowed in our house if they have or had a temperature recently, unless of course they live here. Then their just not allowed in my room unless they absolutely have to.
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That is great advice. I’m gonna have to use it myself as well. Lol. And yes, hearing someone say what you’ve been feeling does make it more real and it can hurt. But again, all we can do is try to brush it off.
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Thank you gals! *Hugs*
Kelly, I really appreciate what you said. I’ve been in a dump lately and I’ve been struggling with finding any reason to continue trying. I even told my mom that I thought it’d be better for me to just go to a nursing home so that they didn’t have to deal with me anymore. But my mom was adamant about not sending me to a nursing home yet. I love her. I’m trying to find that light you’re talking about, Kelly, and I’m looking forward to the day I see it. My mom always says that everyone goes through what they go through cuz they are strong enough to go through it, and I think she is right. These past few months have been torture for me, but TBH I’d rather go through that again than have to have a trach. I think that would be the ultimate blow for me. I’ve already told my moms and doctors that if I ever have to be put on a ventilator, I want them to just take it out and let me go. I don’t want to live like that. Do you still have your trach? Or were you able to get rid of it? Either way, I have incredible respect for you for going through that and still seeing the light.
Thank you for sharing your story with me. -
It also depends on the person I guess. One of my moms acts like I’m a chore sometimes, but that’s just how she is. Literally everything is a chore for her, including giving herself a bath. My other mom admits that it’s a lot of work, but I never feel like I’m a chore with her. Nor do I feel like a chore for my brother. But even when they don’t make it seem like a chore, I feel like I’m a chore simply because I know I am a lot to deal with. And that really bothers me sometimes, but my brother tells me to just let it go cuz there’s nothing I can do about it and letting it get to me is pointless.
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Thank you all! Yes I am glad that other people can enjoy these things but still it’d be nice to be able to enjoy them myself as well. Mostof the time I’m okay just watching other people enjoy their selves just like watching a movie is enjoyable. But lately I’ve been tired of SMA in general and those small things just add to it you know? Today my mom put some kind of foam in my chair to see how that goes and it was working good for a while. It’s just now starting to hurt but it’s hurting real bad. Ugh.
I’m gonna have to go. I have more to say but I just can’t. I’m sorry.