Trigeminal Neuralgia

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Trigeminal Neuralgia
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    When you attempt to put off blinking because your eye feels like it is getting poked with a paper clip #TrigeminalNeuralgia

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    I’m new here!

    Hi, my name is Dgrif24. I'm here because
    I was diagnosed with Trigeminal Neuralgia in.1997. I help take care of a sister with Alzheimer’s and is in a nursing home
    #MightyTogether

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    My battle today

    Today I am fighting thoughts of being completely defeated.
    I know from my past experiences that I will make it through, but today I am struggling to hold onto the truth of that.

    I am grieving the fact that I was well for so long after my surgery. I want that pain free time to come back. I may have grieved liked this last before, but my meds have made me forget how it truly was. I have forgotten many months of my life because of them and I don't want to deal with that again. I just want to be well.

    So today, my battle is all in my head, but I can only look forward to when I wake up tomorrow and have a new chance to see my life with this disease differently.

    #TrigeminalNeuralgia

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    I’m new here!

    Hi, my name is zargon20. I'm here because I need some people to connect with to support and get support from with my trigeminal neuralgia battle.

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    Seeing Myself in a Support Group

    Part 1 of 2 I have spent way too much of the last two years staring at boxes on computer screens.

    I taught my parents how to use Zoom.

    I had happy hours and work meetings and training sessions.

    I hate it even though it has been a salve on days when we couldn’t meet in person.

    It has bridged distances and kept me in my pajama pants.

    One thing I hate so much about it is that you can see yourself in that little square. The whole time, you are faced with your own image. I’ve noticed bags under my eyes, wrinkles I didn’t know I had, and when I was long overdue for a haircut.

    The other night I logged onto a support group meeting for facial pain. I’ve had this diagnosis for close to eight years, but Zoom brought me to my first support group. I’ve considered attending before, but they were an hour away and I would have had to take off work and figure out where to park. I didn’t think about attending when my symptoms were at bay, but lately, they have been returning. COVID took support groups all online and I figured it was time to join.

    I logged onto one in a few months ago and it didn’t seem terrible. Some people were in so much pain they were hard to look at, but a few seemed like me. The host was friendly and kept it short and kept us on track. Someone asked an honest, gut-wrenching question about how to not make this your identity when it takes up so much of who you are. Her honesty made me think that maybe these are my people. I spoke up and promised to attend the next one I could.

    I logged on a month later, but these were not the same people as last time. This was not the same host. There was no friendly banter. The host made sure that each person got to tell their story. That they got their time. Which is maybe one of the most important gifts we can offer someone. However, I was uncomfortable from the beginning.

    Each person ticked through their dosage, their symptoms and how long they’d been doing this. People interrupted with questions, “What caused it?” “Who is your doctor?” “Have you tried ________?” “Have you had surgery?” A few people tacked on a heart question at the end. “How do you keep going when it feels so overwhelming?” More than one person mentioned suicide.

    Everything in me wanted to click “Leave Meeting.” These were not my people even though I saw myself in everything they said.

    No one was answering the hard questions. The moderator let them know when it was time for someone new to have a turn. Each time we moved on, and the next person gave their medical history. I squirmed in my seat. I wanted to bolt. I debated over and over if this was good for me or making things worse. I barely spoke. A nurse shared that she just wanted to go back to her old life. She wanted to go back to work. She wanted to go back to being a better mom. One woman could barely talk. Not because of pain, but because she had lost so much memory. She literally read from an excel sheet where she had written everything down. She had given her dose. I did the math. I had been on more. I wondered how I had sounded in those months. I stayed on mute.

    A few people shared symptoms that gave me relief. I am not crazy. This is not in my head. It is real because they feel it too. But I didn’t relish in the “me too-ness” I still resisted. Someone droned about their doctor, specific procedures, or what kind of MRI to get .

    I spoke last. The two hour meeting had already gone over time and I didn’t want to waste any more with my medical history, diagnosis mishaps or dosages. I gave them the elevator version, that I had been bad, gotten better but my symptoms have started to return. I told them that I was really here because so much of what is hard about this disease isn’t the physical pain (although it is unspeakably hard), but the isolation. The fear. The aloneness. That even with a great army of support that I need to connect with people who understand. I told the nurse that I was sorry but her life likely will never go back to “normal”. That it is forever changed. I promised her that it can still be good and full. That she can expand in the places she has lost. I told her that I’m still trying to figure it out, but I know that talking to people helps. I didn’t talk long and I felt relief when I finished. Like had told the truth to a group of people that didn’t require a copay. That wouldn’t feel the need to bring me dinner or look at me with pity. They knew.

    I’ve since realized that we are all in different spaces. Support groups can offer a safe space to vent, ask questions or even tick through our symptoms. Lord knows we all worry about burdening our family and friends with these conversations. One size might

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    Seeing Myself in a Support Group

    Part 2 of 2 now fit all, but Zoom is giving us so many options that we did not have before. All the tiny squares were a continuum of possibility and pain. The kind of relief I hope for and versions of myself I hated to recognize. Regardless of where I fit, at least it was a place I didn’t have to hide.

    Eventually before we closed out, I caught my own eye. My own square.

    I stared at my Zoom box and somehow felt so disconnected from that person. The sick girl in a support group. I realized that maybe I had an opportunity.

    I looked myself literally in the eye.

    I told myself I was strong. That I was resilient. That I was hopeful. Still. I repeated it (silently of course because I didn’t want to look completely crazy).

    Last, I told my Zoom me that I was brave and then she smiled. I said, “look around, these might not all be your people but you are not alone.”

    #TrigeminalNeuralgia

    1 comment
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    I’m new here!

    Hi, my name is mjstamps. I'm here because I feel so alone and guilty for not being able to do the things I used to do.

    #MightyTogether #Anxiety #Depression #Migraine #OCD #TrigeminalNeuralgia #medullaryspongekidney(MSK)

    7 comments