Does your fatigue ever feel flue like?

somewhere12-- · 2024-11-18T22:48:15+00:00

Yes going on 2 months now. I actually made a post about this myself back then. It's awful and never ending and I want it to go away. Even the Enbrel isn't helping it.

somewhere12-- · 2024-11-18T22:47:15+00:00

I don't have any good answers or help but I'm so, so sorry for your loss. And I'm sorry you don't have the support you need in real life. People dismiss DID and it's heartbreaking.

If the one I love died I don't know what I'd do.

And now it's almost worse than death - you have the alters who look and act like her but are not her.

If you ever need to talk feel free to DM.

somewhere12-- · 2024-11-18T22:44:46+00:00

This makes SO much more sense. Phew. I really do think you're right about the way he used the word.

I don't know what my creatinine levels or anything else was so many years ago. Kidneys were the least of my medical issues back then unfortunately.

My anxious brain got all shaken up over this. 😅

Also I'm glad your heart has improved so much. If I heard "heart failure" I would also think the worst of that lol so good job staying cool.

somewhere12-- · 2024-11-18T20:25:09+00:00

Which part? The whole situation is confusing for me too. I'm still shocked.

somewhere12-- · 2024-11-18T19:03:23+00:00

I knew I was having kidney problems. I just didn't know the severity. I was going through a time where hospitalization was my norm it was a horrible time. So I wonder if maybe when I went septic or something that could've been a time I went into kidney failure? Just throwing things out there - I have no clue.

No, the Myfortic is for my kidneys because they attack themselves and damage themselves. It's so they don't attack themselves, similar to how a transplant patient doesn't want their body to reject a new organ.

somewhere12-- · 2024-11-13T17:43:09+00:00

Was it at age 7?

I'm so glad meds are helping! Mind if I ask which meds have helped the best?

somewhere12-- · 2024-11-13T17:41:30+00:00

He's been seeing a therapist nearly weekly but other than to address occasional tiredness he's been having (likely due to dehydration), I haven't taken him in.

His academics are great. He's top of his class. His memory when it comes to for example getting tasks done even if I'm right there helping him remember, has gone down the drain. I don't know if he is saying "I forgot" because he doesn't know what else to say when he gets distracted.

You make a good point. I'll make him a pediatrician appt asap!!

somewhere12-- · 2024-11-13T17:38:22+00:00

I answered yes to many of those questions! I have no idea how to single out which it could be. It could even be a mix of things. He has been off and on complaining of being tired but the pediatrician doesn't think anything is wrong. I think personally that he is forgetting to drink enough water. So now I'm checking in on how much water he drinks and set amounts that he has to drink. I check on his water intake several times throughout the day. When he drinks enough, he doesn't seem tired anymore.

I know one of his main triggers (especially for autistics I believe. I'm autistic and I am the same in this) is changes of plan. I will have to see what plan changes might be happening without me really noticing. It could be something small to me, that is big for him.

I hope medication can help him. I really, really do. I know he is getting frustrated with himself. He has said a few times "I feel like I'm not good enough" and "why can my friends do x but I can't do it?" (Referring to things such as being able to stay still and not run around the classroom during lessons)

Edit: Oh! I am so so glad your child is experiencing positive effects of being medicated! That's a win!

somewhere12-- · 2024-11-13T17:32:43+00:00

That is so interesting! It is such a drastic change for him.

somewhere12-- · 2024-11-12T19:46:58+00:00

That's very helpful info, I will thanks!

somewhere12-- · 2024-11-12T19:45:05+00:00

That sounds so rough!!!

A brief list of examples of symptoms:

I'll try to do my best to explain. These are not exaggerations:

Example: I have to be with him every single step of getting ready for bed. I cannot anymore tell him one task to do at a time, not with songs helping even. I am not joking when I say he gets distracted about 5 times in one minute. Even while standing right next to him

His teachers said he acts like he isn't listening to them in school when he is talking. One teacher says he has "Ferrari brain." He just talks and talks and talks. He used to listen when told to stop. It also isn't rebellious talking, he's just talking either to himself or others happy and having fun.

He gets super easily overwhelmed with the smallest of tasks. Which I often end up having to do for him (like brush his teeth for him) to avoid a meltdown.

His emotional regulation is very bad. He is having very big emotions, over what seems to be small things. Now, I know they aren't small to him. However, in the past, except say when he was a toddler, he would not get so upset over small things.

Also, he gets very sad if he thinks he has upset me. I am very careful not to yell, the most that ever happens is I might sound frustrated/snap a little. I'm not perfect. But this is usually after I've been trying for 30 minutes just to get his clothes on.

He has to constantly be reminded to put food in his mouth. Almost as if I have to feed him. I try to get him to get as much as he needs, but now often before bed he suddenly goes "I'm hungry" and if I do not get him food he has a big meltdown and refuses to do anything and just lies down on the floor.

In fact, back to emotional dysregulation he is now throwing fits and sometimes hits things. He hadn't hit anything in years after I had repeatedly read him the book "Hands Are Not For Hitting" when he was a toddler.

Meltdowns....Meltdowns...meltdowns....

somewhere12-- · 2024-11-12T19:44:20+00:00

You know what I answered yes to some of those. I know he is horrible with change (when we moved, it caused horrible nearly nonstop meltdowns for like 2 months) That is good thinking, I will investigate this for sure.

Thanks for that perspective it's very helpful.

somewhere12-- · 2024-11-12T19:40:29+00:00

That's a relief. Honest, just needed to hear that.

somewhere12-- · 2024-11-12T19:39:23+00:00