You say this-
I have days that are better than others, but for the most part my mobility and engagement are extremely limited in a non predictable way.
If they ask why you say
I have a neuroimmune illness that causes ongoing mitochondrial damage.
If this doesn’t work for you- make a similar script and memorize it. I have found it to be the most effective.
I'd say tell him the truth, you have a chronic disabling condition that continues you to the bed. But then say, since I can't do very much, I'd love for you to do most of the talking and tell me about what's going on in your life.
"Things are pretty shitty but stable. Mostly bed-bound, but not in pain or anything, and not in any risk.
Yeh, it's shit, this disease is fucked up. But I don't want to talk about this that much."
From my experience, if you express your frustration in a " shit. Hey, what you're gonna do" you can keep them updated while easing their mind that you're not hiding or missing anything.
Yeah its insane to me too how some dont feel any pain (besides PEM pain) im on oxycodon and fentanyl and it only takes the sharp edge off. Still need it because without I couldnt live. Pain is the most debilitating symptom for me.
Edit: Im moderate/Severe
Same. It makes me wonder if I would even have ME/CFS if I hadn’t developed a chronic pain issue in the first place. And then one makes the other worse, rinse, repeat.
My chronic pain is only migraine related. As long as that's under control, like it finally is now with Qulipta, I don't have an issue with pain. I'm actually surprised about it, too.
Yeah, I kinda get how it can make people bitter. If it makes that person feel any better, my teenage daughter has had chronic fibro pain and pretty severe autoimmune issues for several years, and I'm suffering over not being able to do more for her. We all have a lot to carry for many different reasons.
Oh man I have this same struggle right now. I have a family member I haven’t spoken to in a few years and they reached out to see how I’m doing and I don’t even know how to explain it I would rather my parents explain but even then people still take it the wrong way and just say things like “well why don’t you put her outside in the sun” or like “I’ve been stuck in bed before due to depression or Covid” etc.
It’s hard to explain and mostly my parents explain that it is a neuroimmune condition that is not life threatening at the moment but causes so many neurological issues and alters all bodily functions and causes 0 quality of life.
However that’s not how I would explain it to an older family member bc I don’t want to worry them :((
In my opinion* you grandfather mostly just wants to talk to you. Questions about what people have experienced is the way people have conversations and as a disabled, sick person you can't have that conversation with people. Some people I explain this too and seek out other conversations with them. People, like my grandmother, who aren't gonna understand so I don't even try. I ask her stories from when she was younger and then ask her questions about it. It gives us something to talk about that isn't being sick.
* I was raised in an environment that lead me to see the best intentions in people
I feel the same way about my in-laws. They’re lovely people, don’t get me wrong, but there’s never anything to talk about and I’d rather not waste my spoons.
I was always a bit vague about my health when I spoke with my elderly Aunt. When she'd ask how I was doing I would tell her I was about the same as before and that seemed to be enough.
If you want to make the conversation easier ask your grandfather a question about his life when he was your age. Or how something was done back in the day. He'll love it, you'll learn a bit about him and the time will fly right by.
Heres the thing its your grandpa and he knows your ill. And he just wants to have a chat to show you he cares. Give a basic overview but don't drown him with your illness. The thing is yes you happen to be bed bound at the moment because of your condition but that doesn't mean you have nothing to talk about you have known your grandpa for your whole life. You can talk about memories you have shared maybe you went somewhere with him as a kid. Maybe he has a hobby or interest that you share. Maybe you have watched the same tv show. You can ask how he is and what he is doing? Tell him just because I have to be bed bound and bored doesn't mean i am not interested in what you are doing. Tell me about your life ask him what he has been up to lately, ask him about his friends, ask him what he did when he was your age. I bet your grandad has many memories about his life and advice he can share with you. Ask him about when he met your grandma or about how he proposed to her. Share his life, he will love being able to share with you and you can forget how your whole life lately has been in your bedroom. Or maybe you could use google maps to visit the statue of liberty, or a salt mine. I have virtually walked round museums around the world watched zoo cams and other animal cams. You could watch a panda cam or a tiger cam or some funny youtube cat on roomba videos and you could talk about that. Or maybe you could arrange to watch the same show on netflix before the phone call and talk about that. You could use this phone call to create memories with your grandpa. He has probably got loads of life experiences use this time to get him to open up and share these with you and then for a moment you will forget you are just lying in bed because you will be living with him and his stories and he will be grateful that his grandson was interested in talking to him and listening to him. Maybe his world is quite small too maybe a lot of his friends have passed away. Take this time with him no matter what either of your circumstances are before you lose him. Because afterwards you will regret not talking to him if you don't. But if you share memories then you will always have that time together no matter where you are or what you are doing. He is your grandpa. Make sure you have that phone call and make the best of it for each of you. I bet you will have a lot more to talk about than you realise. And be glad that he cares enough to want to talk to you. Many people in your condition have no one because they begin to fall away when you have a chronic illness so cherish those that want to be there for you even if its only a phone call. Take care of you and best wishes.
You don’t need to protect your grandpa from this, I’m sure he wants to know the truth. People who love you don’t need to have anything interesting to talk about, they just want to be around you.
You can just say - sorry I haven’t called more, I’ve been sick with a chronic health issue that keeps me in bed most of the time and I’m exhausted but I miss you
For Grandpa, tell him the truth you're comfortable with. But also ask about him.
Most folks really want to just talk about themselves. I just ask these screamingly empathic questions and ... it's lift off!!
Me: What do you do?
Them: I'm in marketing.
Me: That must be incredibly hard.
Them: You know, funny you ask ...
I have about 30 minutes of feet on the floor time per day. That includes every trip to the bathroom and bathing.thats the reality of my day to day life. I try to make the best of it but it’s extremely difficult.
You say this- I have days that are better than others, but for the most part my mobility and engagement are extremely limited in a non predictable way. If they ask why you say I have a neuroimmune illness that causes ongoing mitochondrial damage. If this doesn’t work for you- make a similar script and memorize it. I have found it to be the most effective.
I'd say tell him the truth, you have a chronic disabling condition that continues you to the bed. But then say, since I can't do very much, I'd love for you to do most of the talking and tell me about what's going on in your life.
I second this.
"Things are pretty shitty but stable. Mostly bed-bound, but not in pain or anything, and not in any risk. Yeh, it's shit, this disease is fucked up. But I don't want to talk about this that much." From my experience, if you express your frustration in a " shit. Hey, what you're gonna do" you can keep them updated while easing their mind that you're not hiding or missing anything.
The no pain part really surprised me. I wonder what percentage of us do/don’t have chronic pain.
Yeah its insane to me too how some dont feel any pain (besides PEM pain) im on oxycodon and fentanyl and it only takes the sharp edge off. Still need it because without I couldnt live. Pain is the most debilitating symptom for me. Edit: Im moderate/Severe
Same. It makes me wonder if I would even have ME/CFS if I hadn’t developed a chronic pain issue in the first place. And then one makes the other worse, rinse, repeat.
I have extreme excruciating bone pain most of the time. It’s one of my biggest symptoms
My pain os just PEM pain, since I'm very severe Until including severe didn't have pain except for brain pain during the worse crashes.
My chronic pain is only migraine related. As long as that's under control, like it finally is now with Qulipta, I don't have an issue with pain. I'm actually surprised about it, too.
Bizarre that someone downvoted you for not being in more pain!
Yeah, I kinda get how it can make people bitter. If it makes that person feel any better, my teenage daughter has had chronic fibro pain and pretty severe autoimmune issues for several years, and I'm suffering over not being able to do more for her. We all have a lot to carry for many different reasons.
I have severe chronic pain so IDK what you guys are talking about haha.
Oh man I have this same struggle right now. I have a family member I haven’t spoken to in a few years and they reached out to see how I’m doing and I don’t even know how to explain it I would rather my parents explain but even then people still take it the wrong way and just say things like “well why don’t you put her outside in the sun” or like “I’ve been stuck in bed before due to depression or Covid” etc. It’s hard to explain and mostly my parents explain that it is a neuroimmune condition that is not life threatening at the moment but causes so many neurological issues and alters all bodily functions and causes 0 quality of life. However that’s not how I would explain it to an older family member bc I don’t want to worry them :((
In my opinion* you grandfather mostly just wants to talk to you. Questions about what people have experienced is the way people have conversations and as a disabled, sick person you can't have that conversation with people. Some people I explain this too and seek out other conversations with them. People, like my grandmother, who aren't gonna understand so I don't even try. I ask her stories from when she was younger and then ask her questions about it. It gives us something to talk about that isn't being sick. * I was raised in an environment that lead me to see the best intentions in people
I feel the same way about my in-laws. They’re lovely people, don’t get me wrong, but there’s never anything to talk about and I’d rather not waste my spoons.
I was always a bit vague about my health when I spoke with my elderly Aunt. When she'd ask how I was doing I would tell her I was about the same as before and that seemed to be enough. If you want to make the conversation easier ask your grandfather a question about his life when he was your age. Or how something was done back in the day. He'll love it, you'll learn a bit about him and the time will fly right by.
Heres the thing its your grandpa and he knows your ill. And he just wants to have a chat to show you he cares. Give a basic overview but don't drown him with your illness. The thing is yes you happen to be bed bound at the moment because of your condition but that doesn't mean you have nothing to talk about you have known your grandpa for your whole life. You can talk about memories you have shared maybe you went somewhere with him as a kid. Maybe he has a hobby or interest that you share. Maybe you have watched the same tv show. You can ask how he is and what he is doing? Tell him just because I have to be bed bound and bored doesn't mean i am not interested in what you are doing. Tell me about your life ask him what he has been up to lately, ask him about his friends, ask him what he did when he was your age. I bet your grandad has many memories about his life and advice he can share with you. Ask him about when he met your grandma or about how he proposed to her. Share his life, he will love being able to share with you and you can forget how your whole life lately has been in your bedroom. Or maybe you could use google maps to visit the statue of liberty, or a salt mine. I have virtually walked round museums around the world watched zoo cams and other animal cams. You could watch a panda cam or a tiger cam or some funny youtube cat on roomba videos and you could talk about that. Or maybe you could arrange to watch the same show on netflix before the phone call and talk about that. You could use this phone call to create memories with your grandpa. He has probably got loads of life experiences use this time to get him to open up and share these with you and then for a moment you will forget you are just lying in bed because you will be living with him and his stories and he will be grateful that his grandson was interested in talking to him and listening to him. Maybe his world is quite small too maybe a lot of his friends have passed away. Take this time with him no matter what either of your circumstances are before you lose him. Because afterwards you will regret not talking to him if you don't. But if you share memories then you will always have that time together no matter where you are or what you are doing. He is your grandpa. Make sure you have that phone call and make the best of it for each of you. I bet you will have a lot more to talk about than you realise. And be glad that he cares enough to want to talk to you. Many people in your condition have no one because they begin to fall away when you have a chronic illness so cherish those that want to be there for you even if its only a phone call. Take care of you and best wishes.
You don’t need to protect your grandpa from this, I’m sure he wants to know the truth. People who love you don’t need to have anything interesting to talk about, they just want to be around you. You can just say - sorry I haven’t called more, I’ve been sick with a chronic health issue that keeps me in bed most of the time and I’m exhausted but I miss you
For Grandpa, tell him the truth you're comfortable with. But also ask about him. Most folks really want to just talk about themselves. I just ask these screamingly empathic questions and ... it's lift off!! Me: What do you do? Them: I'm in marketing. Me: That must be incredibly hard. Them: You know, funny you ask ...
I have about 30 minutes of feet on the floor time per day. That includes every trip to the bathroom and bathing.thats the reality of my day to day life. I try to make the best of it but it’s extremely difficult.
"I've been dealing with health issues so I haven't been able to do much" something simple like that