Archive post four: Living in the moment is all I can do
Originally posted on April 13, 2017 on private blog edited for myinvisiblebff.com.
Rundown:
1) I weened off of my neuro meds to see what my baseline is (or what symptoms are due to the hemorrhages), and also because I didn't know what side-effect was related to which symptom. I was fully prepared, or so I thought, to deal with a whole lot of symptoms since they were the reason I was on the meds in the first place (mainly headaches, tinnitus, and nerve pain with some tingling/numbness for good measure).
2) In addition, I was gifted a brand new symptom of shortness of breath (which alongside some of my other symptoms such as tachycardia for over 2 weeks, was more than a bit concerning--like "oh crap I'm having a Pontine bleed" sort of feeling)
3) Went to the ER twice in as many weeks, got another MRI (that thankfully didn't show more bleeding), have been on a beta-blocker which is helping immensely, and made a "frequent flyer" joke twice to the same nurse who didn't laugh either time.
4) I had to cancel 4 PT/OT/Speech sessions which was such a bummer but the crappy feels were above and beyond my "normal" crappy feels, which I now equate to waking up everyday with a hangover. (It only took 7 months to come up with that description!)
For the first time in two months I can write and say I am feeling good. I mean...still not great, but the improvement in the last few days is amazing. The only thing I can say for sure is that it will change, because this has been one hell of a rollercoaster ride {both with symptoms, and mental health}. But for this moment, writing and being social and physically sitting up typing on my laptop doesn't make me want to puke. I call that a win.
I was trying to think of how to best offer my 'sage' advice about all of this living in the moment stuff. I'm pretty lucky because feeling so shitty has taught me a lot, especially about how to recognize the great moments and days.
So here it is: if you feel good, do something to keep it going for as long as you can, recognize it when it happens, and enjoy it. And never, ever, feel bad about feeling bad. It zaps energy like woah. Trust me.
