While on my PICC the previous stent of IVs I had a couple times where I felt different. Bad different sadly. It's really hard to describe the feeling I have, it's not Lyme it's different. It's a different type of weakness, tiredness and all around feeling awful. The first time I felt this I asked my doctor what was going on. I described what I was feeling and he told me it was a sign that right now my body is not able to handle much. At that point he immediately took me off all medications to let my body rebuild. I do believe the last time this happened with my PICC was PAX 2013. I wasn't on IVs immediately after it before, and shortly after I restarted IVs was when I had my "break through" of feeling so good I got my PICC removed.
That would be awesome if that's what happens this time. But, the body giving up things happened several times before without the great ending result.
I have done a lot this year. I've actually been able to work, I've been able to travel. It's hard though, because after not feeling well for 17 years, the instant you even feel slightly better you want to spend it all at once.
There's a term chronically ill patients are called; spoonies. A spoonie will save their "spoons" for moments of worth. A spoon is your energy, and sometimes being sick you have to conserve and choose what you want to spend your energy, "spoons", on. This last year I over estimated my spoons, because I had a lot more to spend than I've ever previously had.
Since august it's been the same, if not more severe with my over spending of spoons. I've traveled more than I should; but only because I have a fear of being stuck, which I am. I have a hard time accepting that at the moment so the second an opportunity comes up to leave the house, I grasp at it.
I got back from PAX 2014 a week ago, and I've been down ever since (and was down while there. I missed two days of helping at the convention because I was stuck in bed.) Today I was able to recognize that unique "body giving up" feeling again. It's the weekend so I don't know exactly what to do, there's actually a lot of dilemma. Next weekend is my brothers wedding. I do not, at all, want to feel like this at his wedding weekend. I can't. I've made a decision without doctor consent because I won't be able to talk to him until Monday to stop all antibiotic medications tomorrow and Sunday. No IVs, no mepron, malarone, etc. By Monday hopefully I'll be able to notice if I feel better or worse, and by that time I'll be able to contact my doctor and see what he says. I feel like he will tell me, like previously, to stop everything for a week then slowly restart. I see my LLMD on Tuesday of the following week, so no matter what change happens, at least I'll be in my doctors hands immediately following the wedding.
We will see what happens. I hope this feeling goes away, it literally feels like my body is stopping, and no matter how much I want to operate, it won't let me.
I hate this. I want to work. I want to see my goats. I want to go out with friends, be normal and do things. I hate hate hate this.
