Tremors

(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

I often think about how I see my situation, how to label myself…am I handicapped? Am I disabled? and what the reality is. To be honest I often worry about how others see me too. It takes a lot to process my limitations and how much my life is affected by my plethora of health challenges…

…on any given day: I may have my feet & legs burning in pain due to the Neuropathy I got from my first HIV drugs; I may need to be in the dark with no sound due to an unrelenting migraine; I may stumble putting on my clothes or fall getting up out of a sofa due to my balance problems; I may drop food on the floor from a shaking fork due to my essential tremors; I may not be able to hear someone unless they are close and facing me … even with my hearing aids on; I may only see blurry images and words without may glasses on; I may find it very uncomfortable to sit in a normal chair due to pain from my back problems; I may get lost searching for words numerous times in a discussion due to brainfog; I may have to refer back to get spelling of a word, going back and forth writing every syllable due to my memory problems; I may be deeply depressed or have exaggerated feelings in what I call my Bipolar Brain; I may get incredibly nervous before being around other people due to my anxiety; I may find myself feeling the pull of my addiction.

Whether it’s one of my multiple physical health problems and/or one of mental health struggles, they are all just part of my daily challenges. So have I “earned” the ability to park in a handicap parking spot? What do I think? Does it bother me when people stare? I have learned I have to do whatever it takes to take care of myself. I have learned to not worry what other people think. It might be a day dealing with one of my “invisible illnesses” or things I am struggling with inside. I look just fine on the outside with what you can see. (except when I’m walking with my trekking poles so I don’t fall), I may be dealing with challenges that they can’t see, can't be seen, and things they can’t even be aware of.

So it's hard for others to know what it's like for me to live with such challenges! Because I am embarrassed and hide them so nobody can know about them, nobody can judge me because of them … but then nobody can understand, nobody can love and support me. I hide them all alone and it’s a very heavy load to carry!

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I just spent a whole weekend with my friends on vacation. They were kind and concerned and often offered a hand or reached out to help me …but I declined…

,.. because I have got to practice. I have got to be able to get myself off the floor if I fall when I am home alone. But I think it is also because having them support or assist me means I am unable to take care of my challenges myself, unable to do so because I’m dis-abled! A tough label to own and accept!

#MentalHealth #Disability #Depression #Anxiety #Migraines #COVID19 #BipolarDisorder #RareDisease #MightyTogether #BipolarDepression #Bipolar2Disorder #Bipolar1Disorder #ChronicPain #ChronicIllness #TheMighty #mighty #Selfcare #Selflove #IfYouFeelHopeless #Hope #PTSD #HIVAIDS #BackPain #Addiction #AddictionRecovery #MemoryLoss #ParkinsonsDisease #Tremors #balance #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #DistractMe #PeripheralNeuropathy

My currently #Undiagnosed neurological issues make it harder for me to make work. #Tremors
This is one of the last “fine art” pieces I made.
It’s mixed media.
I’ve been having a rough day and a half and thought I would share something out into the world.