Tremors

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    Are you Dis-abled? Are you Handicapped? How do you see yourself? How do you think others see you? How do you wish they would see you?

    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!

    ———————————————————

    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

    Post

    I had been invited to a party. It was a masque; we were dressed to the nines. The living room was small, the room crowded.

    The situation triggered my tremors. A friend pointed out, "You are trembling." I took a deep breath and then, I went home.

    Weeks later, I was enjoying a play. There was not an empty seat in the house. A standing ovation punctuated the final number that had been performed.

    During the performance, I was relaxed. I realized that, with arranged seating,I have a sense of organization. With a situation like the party, where others can mill about aimlessly, that understated chaos, triggers me.

    1. Having a close friend nearby is helpful.
    2. Self-awareness is a powerful tool.
    3. Now that I know which settings trigger me, I can better prepare for the next time.

    #Tremors , #CPTSD

    Post

    How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

    I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

    Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

    The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

    The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

    Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

    Post

    Back into the Unknown

    I was diagnosed with fibromyalgia and essential tremors a few years ago. It was such a relief to put a name to the disease, and be able to focus my energy on treating and living with it. Fast forward to the last few months, my tremors have been worsening, and they have affected my writing, typing, and errant mouse clicks ( I'm in IT) even clicking on send to all email to my entire company. Long story short, I'm being sent to a movement disorders clinic for my tremors and to be evaluated for Parkinson's Disease due to other issues lining up with it. I feel like I'm starting over again, and 4months to wait for an appointment is just cruel, but they are supposed to be great, so I'll wait and hope for a cancellation. I need to have a name for my foe. Thank you for letting me vent.

    #Fibromyalgia #ParkinsonsDisease #Tremors

    Post

    Feeling run down

    How do you stop worrying about how everything is feeling and focus on your own mental health? I’m not in a good place. I’m constantly worried about every person in my life and feeling like I have to tiptoe around everyone. I can’t just let people feel their feelings because I don’t want them to be upset or sad but yet for some reason it’s ok for me to feel that way constantly. I haven’t been able to go to counseling in almost a month because of life. I have an appt next week but even then I feel like we talk more about how she can relate to me and things her kids have been through. Then I leave there feeling like I didn’t get anywhere. I’m in pain physically constantly and can’t get in to see a dr until November to get shots in my head. Physically and mentally I just feel worn out and don’t want to do it anymore but I keep doing it for my kids. I’m just so tired of everyone’s shit when I can’t even take care of myself. #Depression #ChronicPain #OccipitalNeuralgia #Anxiety #ArnoldChiariMalformation #IntracranialHypertension #Tremors

    Post
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    Wing Without a Bird #ChronicIlless #Dementia #PTSD

    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.

    Post
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    My name is Jennifer, I'm 36yrs old from Nicholasville, Ky. I'm looking to meet like minded people.

    I'm lonely, have several Health Issues, no one cares

    I've been called a Debbie Downer and Burden, not friendship material, etc.

    I have

    Congenital Hydrocephalus
    Retinaopathy of Prematurity
    Hypertonia
    2 L5 S1 Discectomy Back Surgeries
    Chronic Knee, Ankle Pain
    Essential Tremors
    Carpal Tunnel Syndrome
    Neuropathy
    Possible RA

    I need support, care, friendship

    Thanks for allowing me to join

    #Tremors
    #struggling
    #PeopleWhoDon 'tBeliveYou
    #Neuropathy
    #sleepproblems
    #ChronicPain

    #Nosupport
    #Friendlessness

    Post
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    My name is Jennifer, I'm 37yrs old from Nicholasville, Ky. I'm looking to meet like minded people.

    I'm lonely, have several Health Issues, no one cares, No Support, out of work til further notoce, negative in the bank.

    I've been called a Debbie Downer and Burden, not friendship material, etc.

    I have

    Congenital Hydrocephalus
    Retinaopathy of Prematurity
    Hypertonia
    2 L5 S1 Discectomy Back Surgeries
    Chronic Knee, Ankle Pain
    Groin Pain
    Essential Tremors
    Carpal Tunnel Syndrome
    Neuropathy
    Possible RA

    #ChronicPain
    #painflare
    #Insomnia
    #Tremors

    #struggling
    #Lonliness
    #Friendlessness
    'tBelieveYou
    #Neuropathy
    #ChronicPain

    Post

    #Depression as per my past few days

    Whats on your mind?

    I haven't showered in days. I've been asleep more hours than I've been awake. My sustenance has consisted of gas station snacks and #Anxiety . My words seem like i can't get them out fast enough, as if theres a rushing whirlpool in my mind. My t-shirt has been my tissue as well as my napkin. Something about mercury in retrograde again. I know I'm not hungry so, why did i eat that? I messed up and only shaved half of one leg. My #Tremors are making it hard to hold things, write, type. I'm scared. Always so on edge. I'm afraid one day my med's will stop working and i wont have developed the proper coping techniques to be okay.

    Thats whats #onmymind