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POTS Fall

My POTS has been manageable for quite some time now. But this past week, symptoms have been coming back. Yesterday and today both I had a fall. The second one in front of family which is embarrassing. I don’t know why I’m posting this. Probably because I feel all alone in this world. The only good thing is I brought some education to my family. And my dad was supportive and telling my family about all the things I deal with. (In a good way. He wasn’t saying it in a harmful way.) I’ve already emailed my cardiologist so hopefully she’ll have an answer. I also somehow twisted my ankle and my leg and they both hurt like hell but the ankle is worse. I think it’s sprained but my uncle who is a paramedic said to just monitor it and if it gets too bad then go to the hospital. Anyway, just wanted to vent here and connect with others who understand. #POTS #fall

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Concussion, Migraines, major Balance issues, Parkinson’s, tremors, Neuropathy, shoulder/neck pain, back pain, brain fog, poor memory, and no appetite.

(PART TWO - please read Part One above first)

…and the Neuropathy and Migraines I already had have gotten much worse. I had started a new daily med for my migraines and I was having much fewer and less intense ones whenever I did have one. But since the concussion I went from only 4 a month back to 12 migraine days in December. They can really hijack a whole day from when I wake up til bedtime, with bad light and sound sensitivity leaving me in the dark with no sound and very sensitive to movement. I have had Neuropathy since I first started my HIV cocktail in 1999 but it had gone from being bedridden to manageable. Since the concussion I have struggled even before I got out of bed, and I also have no appetite at all. I was about 205 before when I got Covid two years ago but weighed in at 192 when I got out of the hospital and rehab where I did PT and OT but I just weighed in at 178. This is too much weight loss!

This week I started PT for movement /balance and will do so 2x/wk for 8 weeks plus OT. I have been doing the exercise I was given so far 3x/day. (Please see the Update at the bottom about a new fall recently that was probably another concussion). And with the newest med I’m on I have gotten some good night's sleep. Every 2-3 nights but still some are better than none. I use a walker everywhere I go for necessary support and have started drinking two Ensure drinks a day to get protein I need with limited eating.

I definitely am not a patient person but this 6 month scenario has me putting up with challenges for 4.5 months more and adapting to my limitations. When it’s not one thing, it’s another. It’s really helpful that I have had serious pain and lived with other limitations much of my life, so sadly it’s not unfamiliar ground and I just hang on. I enjoyed watching football this weekend while stuck in my lazyboy recliner like usual and tomorrow I will park in a handicap parking spot and use my walker to get to yet another appointment. I try not to dwell on the limitations instead I choose to remember I am on a Path to Recovery and I won’t be like this forever.

UPDATE: Sadly, I was going to post this 3 days ago, but just fell again and face-planted and hit my head very hard. I have a gash under my eye in the shape of my glasses which rammed into my face. I cut my lip pretty badly and both places are very swollen and bruised including a nasty black eye. Just the week before my Neurologist was so happy to see I was using a walker because he said “I’m glad you’re using it because the last thing we want is for you to get another concussion” I fear (and feel) that is what I just did!

#MentalHealth #Depression #Anxiety #Concussion #ParkinsonsDisease #ChronicPain #ChronicIllness #Disability #Limitations #Selflove #Selfcare #COVID19 #Migraine #PeripheralNeuropathy #HIVAIDS #PTSD
#BipolarDisorder #BipolarDepression #Bipolar1Disorder #Bipolar2Disorder #ADHD #Tremors #balance #fall #TheMighty #MightyTogether #MightyMinute #IfYouFeelHopeless #Hope #Love #Belief #happy #DistractMe #BrainFog #Memory

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My Friend the Floor

Sometimes I say I don’t need people to catch me, because I am friends with the floor. The floor catches me sometimes and laughs at/with me sometimes and sometimes lands a well-meaning punch too hard. I have to be patient with this friend who often shows up unannounced, thinking to surprise me and it will be great fun. When I’m writhing there, if someone is in the room, I know they cannot contain my pain. It hurts me to see them watch me there - someone they love’s body trying to turn itself inside out. They plead, beg and bribe the gods for a way that they can help. There’s not. I dance with the edge of knowing what I can control; where is my power and where isn’t it? But most often able people have not fought this war of attrition, and are not prepared for the blow to the gut knocking all the air from their hearts. Seeing them powerless and unaccustomed to this pain adds the hurt of another too and it weighs so much. But the floor, for all its flaws, is quiet after the initial impact. I scream and it listens.
#fall
#EDS
#AutonomicDysfunction
#Dysautonomia
#HEDS
#PosturalOrthostaticTachycardiaSyndrome
#LivingWithPOTS
#MastCellActivationDisorder

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Good Afternoon

I hope all has a awesome good #positive day. Just stay calm and do the best you can do. Laugh & smile.

I'M a little tired this today. Just feeling #Lazy #TheMighty #MightyTogether #Depression #Anxiety

It's just a cloudy rainy type of depressing #fall day.

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Leaves changing

#fall #Photography #Nature

I first saw this tree yesterday and the last few falls it has changed colors so quickly. Just wanted to show a little of nature's beauty from my corner of the world.

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Good evening everyone.

I can't believe it's OCT and Thanksgiving is next Monday. (if you live in #Canada Today was a beautiful #fall day. Pretty warm.

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#fall Cleaning

It took a few hours, but it's nice and clean! Spring time will be painting. Front Porch!

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Baking !

I love baking it keeps my mind off things. My back gave out today twice after my workout today which sucked so I’d love something to look forward to. What baked goods do y’all like to eat in the fall? #ankolysingspondlytis #baking #fall

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