Am I going down a functional doctor rabbit hole?

[wabi-sabi]

I do t think that is an issue with him for now.

I would agree. An orthostatic incident can cause so much bad stuff and it's hard to connect that with just standing up. Showers are so taxing. I showered yesterday, so today I can't get out of bed. But sometimes the grossness gets to me and I just have to wash, even knowing how sick it will make me. It might be like that for your son too. Sometimes taking a shower is more taxing than leaving the house for a car ride!

I think this illness is very hard to understand.

Oh it is! That's why we all struggle so much. I'm sorry this is so hard for you and your son. You really are doing a good job. It means so much to have family who understands and cares even when there isn't a cure or enough treatment (yet).

The good news is that if you can get even a little control over the OI things really get better. That's one of the more treatable parts of the illness. And an important part of pacing is learning to manage your upright time.

Thinking of you, Wabi.

 

[wabi-sabi]

I'm still stuck in bed most of the time. But I can start to sit up in bed a bit. That seems pretty trivial, but being able to sit up in bed means being able to play guitar instead of staring at social media all day. That's huge for my mental health.

So the moral of the story is take heart in small things. They are important.

 

[Johnmac]

Thank you I’ve come across some YouTube videos that promoted brain training/neuroplasticity. I hear mixed reviews on this. Please let me know how it goes for you. I’m almost certain I won’t be able to convince my son to do those things. He only wants to take pills. But maybe if he has absolute proof he would be willing to try.

Yeah, finding an "I'm cured" video & getting him to watch it might help.

Most sick people don't want to get well, unhappily.

 

[wabi-sabi]

Most sick people don't want to get well, unhappily.

Seriously?! I've neve met a sick person who didn't want to be well. What we don't want are empty promises on how to cure our incurable diseases.

 

[hapl808]

Yeah, finding an "I'm cured" video & getting him to watch it might help.

Most sick people don't want to get well, unhappily.

I disagree that most sick people don't want to get well. When most people get strep throat, they take antibiotics or even natural treatments and they try to get better. I've never met someone who was like, "Man, I want to have strep throat forever."

But since medicine can't treat most chronic illnesses effectively, it has a tendency to marginalize the patient rather than admit limitations. Patients do this as well - either dismissing others as 'not really being sick' unlike themselves, or blaming others for not responding to a treatment that worked for them. "If it worked for me and not for you, are you really sick to begin with?"

There may be some people who enjoy attention from being sick. I'm sure there are some people who enjoy torturing small animals. I hope neither is the norm. I've never met anyone IRL who admits they don't want to get well, but I have met many who claim other people don't want to get well.

Personally, I think most people want to be healthy and feel good - but how we deal with our illnesses does vary quite a bit. I tend not to talk about it IRL, so my friends just think I withdrew. Others I know are 'chronic illness warriors' on their public social media talking about their illnesses constantly. I don't think they don't want to get well, that's just their way of dealing.

One of the reasons I don't talk about it a ton IRL is after 25 years of studying it, I think we know much less than we think we do and it's just not that helpful. I view this as a forum where we're puzzling through difficult symptoms and trying to find things that help, even if we can't be cured with current technology. I find arbitrary syndrome nosology somewhat meaningless beyond as shorthand for discussing things.

But hey, just my own views.

 

[Hope_eternal]

Yeah, finding an "I'm cured" video & getting him to watch it might help.

Most sick people don't want to get well, unhappily.

I thought about showing them to him but didn’t want to give him false hope if it turned out to be untrue. Right now I’m not convinced that the retraining is the answer.

I don’t agree with your last comment. That seems a very hurtful thing to say in a forum of people that are struggling tremendously and have obviously put a lot of time, thought, money, effort and energy, not to mention heartache, in trying to find something, anything to help their situation, Maybe you didn’t mean it in the context I read it. I very much think the majority of those suffering with illness desire to be better. Managing an illness can be a scary overwhelming place to be and in those cases I believe the retraining may offer help in such that it can help ease their worries which is definitely a benefit but again I’m not convinced it’s the complete answer. I’ve heard many contrary account where it actually made no difference.

I do hope it works for you. May I ask how it’s going? Would you be willing to share your ME level? I’m open to trying the method and may still down the road but need more data. It requires energy that I don’t want him to expend if it turns out it often doesn’t make any marked healing in many that try it.,

 

[Hope_eternal]

I'm still stuck in bed most of the time. But I can start to sit up in bed a bit. That seems pretty trivial, but being able to sit up in bed means being able to play guitar instead of staring at social media all day. That's huge for my mental health.

So the moral of the story is take heart in small things. They are important.

Oh yes those “small” wins are very uplifting! I’ve always wanted to play the guitar. It’s one of my favorite instruments. I tried to learn on my own but that didn’t go so well . Did you take lessons or did you self learn? What type of music do you like to play?

We’ve been having some “small” wins here. I started giving my son cumin a couple days ago after he crashed from taking one too many showers and I don’t know if it’s just coincidence but he’s been much more energetic in his conversation with us. It’s so nice to be able to connect with him and see him laugh again. He has had times similar to this but these last two days I feel he’s almost back to who I remember him to be conversationally. Gives me hope. And you’re right. These wins are very important. I’m glad you have had those wins and I pray there are more to come!

 

[wabi-sabi]

Did you take lessons or did you self learn? What type of music do you like to play?

I had piano lessons as a child and a bit as an adult, so I already know how to read music. For the guitar I am watching youtube videos and have some easy lesson books from the library. It's an acoustic guitar and I am trying to learn folk songs and campfire songs as well as classical stuff. I just love classical Spanish guitar. It might take a bit before I can play Capricho Arabe:

But then I want to be able to play Blue Shadows from the Three Amigos too!

I'm really glad to hear that you are having some improvement.

 

[Seadragon]

We’ve been having some “small” wins here. I started giving my son cumin a couple days ago after he crashed from taking one too many showers and I don’t know if it’s just coincidence but he’s been much more energetic in his conversation with us. It’s so nice to be able to connect with him and see him laugh again. He has had times similar to this but these last two days I feel he’s almost back to who I remember him to be conversationally. Gives me hope. And you’re right. These wins are very important. I’m glad you have had those wins and I pray there are more to come!

This is wonderful news!

 

[Hope_eternal]

I had piano lessons as a child and a bit as an adult, so I already know how to read music. For the guitar I am watching youtube videos and have some easy lesson books from the library. It's an acoustic guitar and I am trying to learn folk songs and campfire songs as well as classical stuff. I just love classical Spanish guitar. It might take a bit before I can play Capricho Arabe:

But then I want to be able to play Blue Shadows from the Three Amigos too!

I'm really glad to hear that you are having some improvement.

Oh wow nice. That’s quite relaxing actually. Nice choice., I’m impressed you are able to learn with videos. I purchased what was supposed to be an easy way to learn dvd package and let’s just say it wasn’t pretty lol.

 

[wabi-sabi]

I purchased what was supposed to be an easy way to learn dvd package and let’s just say it wasn’t pretty lol.

I always try out the free lesson first. If I don't learn from that, well I don't buy anything. And if they don't have a free trial I generally don't buy either. There is so much free stuff on youtube.

Videos aren't as good as a real live teacher, but I'm not healthy enough to get real lessons. So I'm just trying to do what I can. It keeps me happy.

 

[Hope_eternal]

I always try out the free lesson first. If I don't learn from that, well I don't buy anything. And if they don't have a free trial I generally don't buy either. There is so much free stuff on youtube.

Videos aren't as good as a real live teacher, but I'm not healthy enough to get real lessons. So I'm just trying to do what I can. It keeps me happy.

It’s important to have things that uplift you. I’m glad you have that through music. I agree real live lessons are much preferred to me but it’s hard to find time. So for now I learn things off the internet too. I learned my lesson about buying before trying lol

 

[wabi-sabi]

It’s important to have things that uplift you.

Ooh yes. I think mental health is so important, especially when you're dealing with something hard like a chronic illness. Joy is good for the mental health.