• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Gone non verbal for a while

Emmarose47

Senior Member
Messages
2,127
Location
UK
Hi all
I had an incredibly frightened last flare up and my brain felt so inflammed and hot. Couldnt use screen or speak on phone.
Things are feeling somewhat better but I've decided to carry on non verbal for a while using notes for home helps. It feels scarey and good, v spiritual silence is golden.
I'm using screens 5 mins on 5 mins off and can do a few times and then I leave it.. Def using screens less... Not sure a bad thing re toxicity.
Happy to hear others experiences
 
Messages
18
I’m glad that your trial to go non-verbal has been beneficial for you, Emmarose. It’s positive that you’re also appreciating the spiritual aspect of silence.

Our voice and our ability to speak are such a fundamental part of who we are, that I can understand that not talking can be scary.

I can spend large parts of the day without seeing anyone. I am therefore able to rest my voice.

A positive advantage for me is that my voice goes exceptionally croaky when I’m fatigued. It’s so obvious that I’m struggling that I know immediately to shut up, and people understand that I’m no longer able to talk.

Sometimes my voice is croaky as soon as I get up. At other times, it can go at seemingly random parts of the day.

I have to actively pace myself to make telephone calls, and to have conversations. I sometimes resort to WhatsApp rather than speak.
 

Dysfunkion

Senior Member
Messages
224
I don't go completely non-verbal but my speech goes out the window and various immune, digestive, and neurological issues like facial burning will ramp up if I get too stressed and it's been one of those weeks. I can speak but my vocal quality and ability to form words well gets much worse. It always correlates with a feeling of that stress building up behind my forehead area, I guess it has something to do with the frontal lobe getting too much stress and going "low power mode" for a while. Comes with this general feeling of facial and mental paralysis. Don't use my phone too often, I get a call or two a day and sometmes need to send texts or use the internet on it if I'm at work but with minimal use like that it doesn't do much to me. Though I did recently find out that if I don't keep my body consistently warm enough and stable temperature wise this reaction will happen much quicker and lead to symptom cascades much easier from it too. So until the environment gets a lot more stable I am pretty much living in my hoody again.
 

sunshine44

Que sera sera
Messages
1,191
Hi, @Emmarose47

I feel like I haven't "seen" you around in a while and I just wanted to check in and see how you are doing. Please let us know if/when you can.
Yes, I do wish her and I would have exchanged contact info because I haven’t heard from her since April which is quite unlike her.

Oh Emma, sending you all the love and praying you are acclimating to your circumstances ok 🙏✨🤍
 

sunshine44

Que sera sera
Messages
1,191
Yes, I do wish her and I would have exchanged contact info because I haven’t heard from her since April which is quite unlike her.

Oh Emma, sending you all the love and praying you are acclimating to your circumstances ok 🙏✨🤍
Edit: I forgot Emma and I used to email outside of this forum sometimes. She is ok. Screens are unfortunately very difficult for her now but just wanted to let everyone know 🤍
 
Back