Again****** trigger warning
Reader discretion advised.
I feel like I’ve made so many tiny leaps and bounds forward past few years. Slowly. Nothing huge… but making my existence more comfortable after non stop torture for so long. And that’s not far from the truth. Not Surprisingly, after that much suffering, the mind really starts to go into limbo. Understandably, the fight response to keep going becomes compromised at that level of every hour for years.
Things don’t feel good this week.
Let me rephrase that, things are terribly wrong. There are horrible things happening in my blood and organs and mouth etc and although I can go through potential lists and ideas here, it’s essentially pointless because I do not fit into the category of patient that can be transported to specialists.
So, that leaves me alone.
In the dark.
This isn’t new. This used to be my daily reality. But when it hits to this level, I’m reminded that this is really bad. Whatever has happened to me. Quite possibly many, many conditions at this point. Very swollen organs. Each breath hurts. Lungs. Blood having issues. Assuming hypovaelic (for a long time) but could be other things happening in my blood too. Tuesday was really bad. Almost had to call for ambulance as I couldn’t keep my oxygen much above 90 which produces many issues in my body. Even turning to my side produces terrifically awful things… when I can.
Somedays, I really feel I’m pulling through this AIDS like disease I seem to be facing. Call it Lyme. Call it CIRS. Call it whatever anymore. There are too many labels at this point.
And then yesterday and today, I’m on my knees again. I realize I might not be surviving this illness. Because how could anyone? This is honestly impossible. I can’t much look at things since 2017 as everything shakes and spins my brain. Understatement. I cant be upright for long as there are too many issues to list, one of them being my already struggling organs feel like even worse pancakes and starved of cellular something ir another. Maybe I shouldn’t be sharing this reality on a me/cfs board but on a Lyme board instead. Does it really matter at this point?
It just seems like a cruel joke Somedays.
Even if all the stars aligned and I was given a stretcher and made it to a,b,c,d and e specialists…. My liver is constantly swollen and has severe reactions and can’t properly metabolize most medicines. Found that out the hard way over and over. Let’s not forget the super awesome health insurance I have every doctor wants. Not.
I haven’t seen my nurse friend in over 2 weeks. She came today to help me bathe. Get clean sheets. And she seemed concerned the entire time. Did I feel like I wasn’t going to make it at times today? Yes. But what’s new. I try to keep distracting. Pushing onward.
I mean whatever could it be? The fact I crash every 20 seconds? And have to lay and not move while organs freak out? Can’t speak much? My abdomen is painfully distended? Eating terribly complicated. That I can’t freaking bathe myself for 5? Years now?! We will stop the list there.
I mean which could it be??
Truly can’t imagine being worried about someone like me with one foot in the grave for so many years and one foot out.
She messaged me this evening and said she was extremely concerned because my color is gone and my vitals are not stable. Well, that used to be my 24/7 reality. Not much I can do there. But lay on my side, in the dark and ponder the existence of the microbes in me. Tap into their consciousness. Escape this hell.
I’m not feeling strong this week folks.
I’m sorry. I don’t have any pleasantries to share. I do. But I don’t feel like it. Because I’m in the throes of fighting death again and I’m so tired.
I. Am. So. Tired. Of. Doing. This. Alone. In. A. Broken. System.