Yesterday was a doozy for me. It began with a lovely morning dog walk. Both dogs behaved, too, so that’s always a
bonus. I walked with them easily and
quickly, and only needed to use my cane at the very end. It was humid so, we only walked about 25
minutes. That’s quite a long time for me
to walk. The key is to do it first thing
in the morning, before I even feed us.
Got home, got myself ready for my bus ride to my psych appointment. Had an enjoyable ride, the driver and I
laughed and laughed together. I was in a
good mood and had some positive, proud moments to tell my therapist about my
life. Had a nice, uneventful meeting
with her, and then went downstairs to wait for my return home bus. I had an hour to wait. I ate a protein bar and some quality jerky,
took my lunchtime pills, and had plenty of salty hydration, so, I was set. I have to constantly watch and make sure I am
getting both enough protein and enough salt.
I have POTS (Postural Orthostatic Tachycardia Syndrome) and two of the
effective treatments for me have been those adjustments, high salt, high
protein. Also, I have hEDS (Hypermobile
Ehlers Danlos Syndrome) which is a painful connective tissue disease. It’s rare, and genetic, incurable and
painful. On top of those, my little
basket also holds migraines, Raynauds syndrome, MALS (mesenteric artery
ligament syndrome), gastropariesis, some arthritis, and reactive
depression. Oh, and fibromyalgia. Anyway, I have lived with symptoms of these
for about 13 years so, I have learned how to cope and what my body needs and
when. Except for yesterday.
While I was waiting for the bus to come, sitting in my
wheelchair reading, I felt a sudden flushing of my body. Immediately nauseated plus the feeling of
needing to go #2, badly. (Neither of
those happened.) I felt way too warm,
like I wanted to begin peeling off my clothes, but I wasn’t sweating. I was very confused, very dizzy. But, the thing that was a bit scary was the
profound weakness. It felt like my head
weighed at least 20 pounds and my neck was a few stalks of dry straw. Couldn’t hold it up. In fact, when the bus pulled up, I was in the
process of getting out of my chair to lie on the hallway floor because I
couldn’t sit up any longer. Slowly, I
got myself out to the vehicle, and the driver was jovial, and remembers me as
being such in the past, and I told him I didn’t feel well. He turned up the AC and let me sit
quietly. Kept checking on me throughout
the ride. Got to my home about 45
minutes later, and I couldn’t have stood up to save myself. That’s downright scary when I’d been walking
independently just a few hours before.
Timothy, my husband, was already home from work, and I called him on the
way and told him I needed help. He could
hear in my voice that I did and it was serious.
So, he met us at the curb. I
couldn’t lift my bag. My head was
lolling on my shoulders, which is really painful if you have EDS because our necks
seem to always be sort of unstable and out of whack.
As soon as he wheeled me inside, I could feel the drastic
depth of my symptoms because, normally for me, just being back in my home makes
me feel a little better, if only psychologically and emotionally. Yesterday, not so. I had him take me straight to my bedroom, and
it was a chore to strip and get into the bed.
(I don’t tolerate any clothes on me in bed.) By then I had a migraine working. After I had rested 30 minutes or so, I got up,
into my chair, to the bathroom, and then to the kitchen to get a drink, and
headache pills, then back to my bed. All
from my chair. I had to take about 4
steps from the door of the bathroom to the toilet, and those were risky. Migraine wasn’t the controllable kind, so I
knew things were different. Bad
different.
At that point, I wanted so much to pass out and escape, but
I reached out instead. I got on both of
my two support groups and told of my afternoon.
Told of the symptoms, the onset, the results, my safety, my current
status. I was home safe. With a responsible adult. But, I still didn’t know what was going on,
nor why it happened. And this very thing
wasn’t brand new, it had happened before.
I needed to understand it. I
wasn’t at peace. I wouldn’t be able to
rest peacefully until I knew what was going on.
I knew this. A few hours after
I’d been in bed resting, chatting with my friends about what it may be, the
migraine bloomed into a full-rose, and the vomiting began. This was new and different. So, now I had to make a choice whether or not
to be scared.
And that’s exactly what I did. I made a choice not to be scared. The unknown is terrifying, if you give it
that power. Also, it can be thrilling,
if you give it that power. It’s unknown
after all. Just neutral. When you’re suffering, you already have
momentum on a certain path, and it isn’t good.
It’s only natural to think you will continue on where you’ve got
momentum. Not that irrational to suspect
things could continue to feel crappy, and wonder just how crappy they’ll get,
and whether you can handle it. But,
here’s the truth. The truth of my life
and what living with chronic illness has taught me. I keep surviving. Every single time. And as long as I have faith that I will survive
it, it no longer worries me. I have deep
faith that the one time I don’t survive, if that happens, I will be in the Best
Hands Ever, with Christ. Until then, I
reach out to my support system to keep me from panicking. They jump in with good vibes, and
suggestions, and possible triggers. And
prayers. And I feel loved. Cared for.
And then, I could rest peacefully.
I could sleep. After seeking
help. Help is out there.
This morning is better.
I figured out that I think I was feeling side-effects from a muscle
relaxer I took yesterday morning (I tweaked my low back changing the sheets on
my bed the day before). I wouldn’t have
even remembered that if not for my friends suggesting possibilities. So, that’s entirely understandable. And no wonder my head was too heavy to hold
up. And I can say that I don’t have fear
going forward. I always want to be able
to say that, with honesty. There are a
crap-load of events and issues that are entirely out of my control, and then
there are even more happening within my skin that are outside my control. But, if I can control something, even if only
my attitude, then I control everything.
Lovely finish. Gotta go back to
bed now.
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