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Dianna's early 2024 struggles - Kyle's post
🕑 Added 2024-05-10 15:33:37 +0000 UTCHey 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."
Comments
ELIZABETH FIGUS
Thank you for sharing this. My partner and I went through this when I was at my worst with Long Covid ME/CFS in 2024. By sharing your story, you are moving the needle towards finding a cure for everyone. Thank you so much!
Steve Brumme
There is no blame here. Just inspiration and compassion for the love Kyle is giving to Diana, and the love Diana is sharing with Kyle and everyone. I listen to Diana's videos and the life, and the joy of learning and teaching she shares... May the illness pass. It is a wish. Just that lives here.
Dee
My heart goes out to you both. You are doing an amazing job getting through the most difficult situation. Praying for a full recovery.
Andrew Irvine
Can't help it. I cry every time I look at this picture. There's always hope, though.
Monte
Dear Sister we are praying for You and Your Amazing Hub Kyle!!! Lord, bring Healing into Every cell of Dianna’s being! Restore all that has been lost and Bless with so much More!
Stefan Theodoru
Thinking of you both, I truly hope things improve. All you can do is your best, no one can expect anything more. Much love.
Ivy Tara Blair
oh oh oh, the guilt and blame game that sneak into our heads when we're not looking.... the healthiest most vivacious most athletic most normal every day most health conscious most driven CEOs have been hit with Long Covid. We have to remember that there was NOTHING any of us could have done that caused covid to transition to LC - if there is any underlying factor that ties us all together, it is yet unknown. We could no more have staved it off than those with Lupus or MS or any autoimmune condition (if indeed LC is - my current ponderings for my own illness). No blame, no blame okay? (and oh, please, medical research now that we have literally millions around the world with this disease, PLEASE throw money and time at it...)
