Dianna's early 2024 struggles - Kyle's post

Hey everyone, (Levi typing)

I'm going to share Kyle's Instagram post from yesterday here. Dianna's birthday was recent and she's been struggling hard lately with the crashes. I'm going to share an update with you guys next week on her current meals and some of the changes being made. I'm happy we're finally able to give her food she enjoys (she says it's the best part of her day). But it's also important to remember the real struggles of what it's like to be in bed for years.

Thanks everyone, if you're reading this here, you are the reason she has a shot at getting better.
Here's Kyle's text from the post -

- "#mecfs is unimaginably isolating, especially for severe patients like Dianna. The disease just doesn’t make sense; even for me, it’s taken a year of caring for her every day to start to understand.

To get a sense, Dianna has spent the last year and a half in her room, unable to watch tv or read a book or spend time with friends.

She cannot walk or take care of herself. She can brush her teeth and feed herself, but not much more than that. We can cuddle and hold hands, but sometimes that’s too much for her. It’s so removed from normal life, and so much worse than you could ever imagine.

It’s hard to share these things, because I fear people will blame me or blame her for not treating her properly, for not taking this medication or that supplement, or following such and such a protocol. Or worse yet, suggesting that all she needs is to get up and go for a walk.

Even on this post, people will say those things.

But there’s no consistent treatment or even diagnostics at this point. So, we are left alone, in pain, wondering if what we’re doing is right or wrong, if there’s something else we should have done a year ago that would have avoided all this. We try not to think like that, but it creeps in from time to time.

If you are a physician, please consider getting involved in treating and researching #longcovid and #mecfs While Dianna is still very sick, her doctors and treatments ease her burden and give us hope.

Written by Kyle, Dianna’s husband."