Posted 5/6/2019 4:55 AM (GMT -6)
Morning everyone, hope the day is good to you.
I am posting about something I don’t often see much here or anywhere really.
I am and have been struggling.
I have gone from a decently normal life to something much different.
As is always with Lupus it’s allot about patience and wait and see.
Well I have really noticed a change since the summer of 2017. Much more nagging illness, much more wait and see. It never really changed back to decently normal and pretty much I have learned that things seem to be taking a turn.
I have been struggling with terrible GI stuff, gut trouble. It just doesn’t want to work very well anymore.
I find it harder and harder to eat. The nausea is enough to drive me mad.
Well since about February of this year there has been another definite turn.
I’ve gone from hard to eat to just don’t want to because it makes me feel so yucky.
I have had some reall trouble with spine too. Cervical. Which in turn is causing all kinds of problems in my head. Pain, hearing loss, vision disturbances, balance issues....and so on.
The fatigue is beyond that to extreme. I can and do fall hard and fast to sleep and sleep for hours and then still sleep hard through the night. We all know that’s not normal for Lupus.
So more blood work, awaiting a MRI.
The bloodwork shows mild to moderate kidney disease and liver problems. Which tells me allot about the “what and why”.
Trouble is nobody ever talks about what it looks like in real life or how to manage it.
It is what it is, but I want to know how to navigate this.
I am not the person I used to be physically, nor cognatively some days. How could I be?
I am not blaming myself or anybody it is what it is.
But when and how can and do I stop living the normal life? Life just keeps on going even when
I can no longer deal....I mean with bills payments, schedules, this account and that account, the car, groceries, socializing, you know life! It takes a pile of effort which I just haven’t got and when I try to keep up I just get sicker.
How does one begin to shut life down, just to be able to navigate something much more pressing, progressive nasty Lupus. I feel much better when the load is off me but how does one begin to shut down the freight train that is life?