Halloween, E.T., and a glossary...oh my!
Halloween was a blast this year!
I had the Elliott and E.T. in a basket costume in my head ever since I started using my rollator full-time. I wholeheartedly believe in comfort, and cleverness especially, in a good Halloween costume and this did not disappoint!
I excitedly got dressed in the morning and my mom presented me with the finished version of E.T. (so clever!!) My dad was the photographer for the day (jk he took me to my appointments, then I made him Kodak those moments and he nailed it).
I was exhausted, but I was still so excited, by the time I returned home and posted some of the pictures on social media. It was crazy because I remember physically feeling the spoons (energy, see below) draining out of my body. And then the symptoms came, and let’s just say I was completely done by 4:30 pm.
Yes, if you were wondering, the symptom part is always awful.
But I had such a good day with my friends at my appointments. At both of them I took a picture, and the above photo shows me and my (former *sad face*) physical therapist on the left, and to the right of me is my receptionista favorita at the rehab center.
They are so much fun to chat with because I know them so well (PT/OT/Speech 2-4 times a week for 10 months) and maybe more importantly, they know me so well. They know the e-Lo 2.0 sorta me, and they even are well-acquainted with my invisible BFF. So aside from my roomies and a few others, they are the closest to my ongoing saga.
I miss that. Now I am wrapping up speech/cognition therapy so I’ll have to make sure to pop in once in awhile! (I feel like I’m on Cheers when I go there ya know? Sometimes I wanna go where everybody knows my name…ha, you sang it didn’t you?)
Also, it has come to my attention that I need to define some terms that I use a lot in my writing.
Glossary (ABC order)
Exhibit A: my badass AFO
AFO: ankle foot orthodic. I use this anytime I leave the house. My knee and ankle gives out if I don’t, so it’s pretty important. It’s also pretty badass.
Bling, John Mc, or pimp: my canes. I pick one to take with us based on my mood and it's pretty straightforward: plain, or fancy. Also, how many times do you think Bling and John Mc have been used in the same utterance? (cane/resources/other aides here)
Brain injury: an umbrella term that includes concussion & PCS, traumatic brain injury (TBI), stroke, lesion, brain tumor, CCM, AVM, aneurysm, Chiari Malformation, and many more! Most of the time when someone tells you they have a brain injury it’s pretty loaded and could mean a lot of things. **The best thing you can do is be aware of this, and be understanding that they might have cognitive issues (that you probs won’t see), physical symptoms (that you may not see), and emotional stuff (ranging from depression to personality changes and anything in-between).**
Cav(s): describing one or more CCM brain lesions (aka: cavernoma, cavernous malformations, cavernous angioma)
CCM: cerebral cavernous malformation brain lesions that look like raspberries, bleed on occasion, leak often, and cause deficits & so much more! The Angioma Alliance is the best resource!
Cocoon: a place to chill, relax, and avoid outside stimuli. Steve Guttenberg not included *that was a reference from this, haha (Cocoon, 1985 IMDB)
HOD: Hypertrophic Olivary Degeneration; the olive in your brainstem is super freaking important, y'all. This disease is very rare, and here’s how it can happen. First, you must have one of these things: a brain stem hemorrhage, or brain stem surgery (or gamma knife), a tumor, or other injury to the very specific spot in the brainstem. Next: it irritates the olive in the brainstem and it gets pretty large, in some cases and causes HOD. It shows up on the MRI as an olive looking thing. It’s a degenerative, nerves & other autonomic stuff, but the pool of research isn’t very large. Prognosis is not really known. (No joke here but if you want to chuckle, look up HOD on Urban Dictionary. Grandma, if you’re reading this-please don’t.)
Invisible BFF: a sarcastically loving, term of endearment for a mostly invisible chronic illness, or the symptoms resulting from one.
Invisible illness and/or disability: an excerpt from Invisible Disabilities Association “The term we define invisible disability refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.
Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have and invisible disability or invisible disabilities. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they live with invisible disabilities.” Read more here.
Pool: exercises in the pool; think water aerobics or pool therapy. I went through one-on-one pool therapy with a neuro-vestibular PT before I got a monthly pass. Now, I work on my exercises as often as I’m able, and am tempted to join a group class. Then I remember that I can’t plan on things because I’m constantly on a rollercoaster ride of symptoms.
Spoonie: a person who has a chronic illness and/or disability...aka: me! A proud spoonie! (see Spoon Theory below) Examples are: Fibromyalgia, MS, brain injury, mental health conditions, Crohn's & IBS, and honestly so many others.
My motto...this works about 30% of the time, ha!
Spoon Theory: as the legend goes, spoonies got their name because they have a limited amount of 'spoons', ie: energy, to do tasks. The more daunting, the more spoons required. (It's all relative; my idea of daunting before included teaching 10 hours in one day. My daunting now is ordering and paying for tea at a coffee shop--so, it's all about how you look at it.) Once a person has used all their spoons, they are so fatigued and cannot re-spoon until the next day. Check out Spoon Theory for newbies
Symptoms: a nice & simple way of describing any of the following (for me: e-Lo)--headache, trigeminal nerve pain (and/or other nerve pain & sensation), neck pain, dizziness, nausea, fatigue, coordination & balance issues (formally called ataxia), tinnitus (ringing and pulsing), strength & grip issues, sensitivity to light & sound, slow & slurred speech, brain fog, and finally anxiety & emotional issues relating to said symptoms. (I think we’re all glad I don’t list all of these each time...)
I have used more than my spoons writing this, but I am happy to do it! Say hi and leave a comment. Spread love & peanut butter!
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