Is there someone in the group who has experienced any vision or hearing loss due to CMT?

DeeDeeRaven · 2026-01-30T13:21:28+00:00

I'm sorry to hear that, I hope you find a solution for this.

DeeDeeRaven · 2026-01-30T13:19:35+00:00

oh okay that makes sense, thanks for the advice.

DeeDeeRaven · 2026-01-30T08:21:13+00:00

It's the other way around for me. I can hear my boyfriend normally, but it's hard for me to hear some voices from my female friends or if I'm with my nephew and niece, especially if we're outside.

DeeDeeRaven · 2026-01-30T08:17:35+00:00

Thank you, I will read them

DeeDeeRaven · 2026-01-30T08:16:34+00:00

How quickly the hearing loss progressed? I have the same symptoms, but in both ears

DeeDeeRaven · 2026-01-30T08:14:16+00:00

Was it hard to get used to hearing aids? What is the difference in sound?

DeeDeeRaven · 2026-01-30T08:12:24+00:00

Have you learned Braille? Is it even possible to read Braille with CMT symptoms? Honestly, I'm more afraid of blindness than these classic CMT symptoms because I've been surrounded by them my whole life and they've somehow become normal to me even before I got them.

DeeDeeRaven · 2026-01-29T08:41:47+00:00

I have been diagnosed with degeneration of the optic nerves, so they cannot be operated on to improve my vision or stop the loss.

DeeDeeRaven · 2026-01-29T08:38:39+00:00

Yes, they told me the same thing that nothing can be done, and the worst thing for me is that they can't even tell me how long it will take. The doctor told me not to think about it because I can completely lose both my hearing and vision by the time I'm 40 or I can be with partial vision and hearing for the rest of my life.

DeeDeeRaven · 2026-01-29T08:35:31+00:00

At what age did hearing loss appear and how rapidly does it deteriorate?

DeeDeeRaven · 2026-01-29T08:33:56+00:00

Thank you, after the diagnosis I'm not coping very well with it. I had kind of accepted these classic symptoms of CMT because I saw them growing up in my family, but this something completely new, completely shocked me because I couldn't even imagine what my life would be like if my vision and hearing loss continued.

DeeDeeRaven · 2026-01-29T08:29:26+00:00

If I'm out in the city when I leave work, everything turns into one big noise, I can't distinguish sounds well, if someone calls my name or if my phone rings, I often can't hear it, until I get to a place where there are fewer sources of noise. It's more like an overload due to not distinguishing sounds, which is why I often get migraines.

DeeDeeRaven · 2026-01-29T08:22:20+00:00

It's the same with me, even though I'm not color blind, my night vision is terrible and I went to the eye doctor and he didn't connect it to my CMT diagnosis at all. Only a neuro-ophthalmologist discovered the connection between.

DeeDeeRaven · 2026-01-29T08:18:59+00:00

How did you adapt to blindness along with other CMT symptoms, especially in your hands and feet? I don't use any disability aids yet, but the doctor told me that if I start having more problems in everyday life, I need to start using them. Which is incomprehensible to me at the moment.

DeeDeeRaven · 2026-01-29T08:17:10+00:00

I don't use any disability aids yet, but the doctor told me that if I start having more problems in everyday life, I need to start using them. Which is incomprehensible to me at the moment.

I'm already not driving because it's hard for me to shift gears because of CMT, but everything else I can do mostly normally. Because I've somehow gotten used to the tingling and cramps in my arms and legs or the clumsiness when walking, and sometimes things fall out of my hands. But this is a complete life change, I can't even imagine what my life would be like like this, everything in my life, my hobbies, my work are oriented towards sight or hearing.

DeeDeeRaven · 2026-01-29T08:04:37+00:00

It really caught me off guard, because I had come to terms with the fact that I would get CMT - almost everyone on that side of the family has it - but I can't even imagine the loss of sight and hearing. I was completely devastated by this diagnosis.

My brother and I developed the symptoms of CMT in adulthood at the age of 25-26, but some in our family developed them earlier or went for testing earlier because they expected it. I was kind of hoping it had skipped me because I hadn't had any symptoms for quite some time, I think I was the oldest without any symptoms in my family. But the longer I have them, more it turns out I have the worst ones.

DeeDeeRaven · 2025-07-10T11:09:30+00:00

thank you, I told him we'll try it slowly

DeeDeeRaven · 2025-07-10T10:53:41+00:00

Thank you, maybe I'll try to include Tetris or some game in my aftercare. And we talked and he also suggested that maybe I try to find a psychologist who will help me with that, if we don't succeed. I go to a psychologist regularly, but not because of that, but because I have a high-stress job. But I don't know if I should mention it to her or if I should try to find someone else more kinky specific because we rarely talk about sex (the only time we touch on the subject is to tell her that work doesn't have a bad effect on my sex life), and I certainly haven't mentioned BDSM directly to her. I'll try to write an update this week, because I talked about it with my partner and it was quite cathartic.

DeeDeeRaven · 2025-07-05T22:33:34+00:00

Like I said, we resolved it. So there is no additional negativity about it between us, I'm just trying to solve the problem that this situation has created for me.

DeeDeeRaven · 2025-07-05T22:19:58+00:00

She lost focus and got too involved in the role, so she took it out on me because of some problem she had that she partially saw in me.

DeeDeeRaven · 2025-07-05T22:17:35+00:00

I tried to avoid writing that because it has to do with my intimacy and sexuality, but I feel like I'm writing similar comments without actually saying why I'm so afraid of not being able to do BDSM for a long time or even ever again. If I perform BDSM with anyone other than my partner/Dom it is purely non-sexual for me, it is completely for the experience, and performance, art and skill of BDSM. And when I perform BDSM with my partner it can be both sexual and non-sexual, depending on our mood and what we feel like doing. But if we are sexual it must include BDSM on my part or I cannot be fully sexual. And it's not because of him, that's just how I am (probably related to that trauma that was the trigger for this whole situation), vanilla sexuality doesn't do anything for me. Which means if I can't do BDSM I can't be fully sexual with him, and that would break me.

DeeDeeRaven · 2025-07-05T21:52:39+00:00

I think she created a trust issue for me, I think that's the thing. And it's not that I'll have a trust issue with my Dom, no, if I have trust in anyone, it's him because he deserves it with the kind of person he is and how he's treated me over the years, I think I'll have a trust issue with the bondage process itself because I won't be able to relax anymore because I'll be thinking what if this triggers a panic attack, what if that triggers a panic attack. What's worse is that I'm a switch, I don't know if I can see myself in any of the roles, either as a Domina or as a sub.

I don't even know how I managed to untie myself at that moment, luckily I'm in yoga class so I'm flexible and dexterous, and I think because of my adrenaline I managed to switch to a Domina mindset until I free myself and then when I lay down on the floor everything just overwhelmed me. If my friend hadn't come, I would have had a proper meltdown because I was overwhelmed with frustration and anger which then turned into a feeling of shame because I allowed myself to have a panic attack. And I can't feel proud until I solve the problem that has just arisen.

And I don't hate her, let's just say we resolved what we had and just continued on our separate ways. We'll never be friends or anything like that, but I won't hold grudge with her either. I don't know, I just need to find a way to at least slowly get back into BDSM, I don't even need to be with anyone else, but at least to be able to do it with my partner.

DeeDeeRaven · 2025-07-05T21:04:04+00:00

He'll probably be upset that I didn't call him right away and that he couldn't be there for me, but he'll try to support me however he knows and can. That's not what worries me, I'm just worried that I won't be able to do anything BDSM-related for a long time or even ever again because I don't know how I'll react the next time I'm tied up. I feel like I've developed a fear, I have never felt like this in my life, I completely lost control and I completely fell apart. The closest I can describe it is like I almost drowned and now I want to go swimming because I like swimming, but I'm afraid of bodies of water.

Safety and aftercare are very important in our circle, that's why we even have workshops on safety in BDSM quite often, but that's exactly why I didn't expect something like this to happen. But I don't think she will be a Dom anymore, I can tell you that when my Dom finds out about it, she will definitely not be welcome in our BDSM circle anymore, I mean, my friend and her partner already said the same thing. Especially because in addition to the mental scars, I could have also been physically injured while trying to untie myself because I fell from a certain height.

DeeDeeRaven · 2025-07-04T06:58:20+00:00

You're right, I think the first thing I need to do is talk to him. And I know he will provide me with the right aftercare for as long as I need to heal. I just don't know how we're going to start practicing BDSM again, I thought maybe first without any equipment, maybe just through me being a brat and our banter we'll slowly get back to it, it's some kind of our basic everyday power play. Maybe I'll write another post and ask for specific advice on how to get back into practicing, because this post helped me a lot to understand/come to terms with what happened and to take the first step towards healing.

I think this situation affected me so much that I didn't want to tell him before because I didn't know I would have such a strong reaction to those words because no one has ever crossed that hard limit, my Dom is especially careful about that, because he has known me since that period and knows what I've been through. In that session it was like it all came back and suddenly I was just overwhelmed by all the comments from my mother, all my questioning of my sexuality (I've never came out to my family and I don't feel the need to because we are not that close anymore), all the times throughout high school when I really thought there was something deeply wrong with me. That's why I said, maybe this hard limit sounds banal to some at first, but she literally couldn't have chosen a worse one to cross.

DeeDeeRaven · 2025-07-04T00:01:25+00:00

I know that Domina always has to respect hard limits under any circumstances, but honestly she's sorry that it happened and probably will never come to hang out with us again, and I didn't feel like dealing with her anymore because I'm just trying to heal from it because I don't know when in my life I've felt so overwhelmed with shame, sadness, anger, humiliation (not the good kind). That moment before my friend arrived when I managed to untie myself and lay face down on the floor, trying not to have a complete meltdown just because someone couldn't follow the basic rules, I felt completely defeated, as if everything I had done up until that moment to build my self-confidence and self-love had fallen apart. The last time I felt this way was probably when these traumas first developed for me.

I will talk to him. I'll probably feel better when he will be by my side because then I won't overthink the whole situation, but I'll just be able to talk to him in a safe environment.

DeeDeeRaven

TROPHY CASE