• 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 (FM), 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.

I surrender

[I don't know why this is listed as my blog, this below is my response to another blogger, Genevieve? Who may be off the forum now, or her blog may have been removed and my response put in its place? Anyway, the comments below are probably to the original blog post, now missing... --Kurt]

Sorry you are sad. This illness can be pretty frustrating. So many of us have seemingly tried it all and not been helped much. Interesting about TCM, is there a protocol you are trying for that?

In my view the past year has been the best year yet for CFS because of all the new research findings, and I do not mean XMRV. There are so many new directions to look and I sincerely believe we are getting close to some answers.

My big picture is that CFS takes us out of reality, the reality we have known all our lives no longer works, so part of our challenge is to reconnect with something outside our own illness, to be part of some reality outside ourselves.

Comments

Genevieve,

I will try to find your earlier posts, when you were not complaining but sad because you received no comments on it. But I don't often get to the blogs - there is so much "news" on research these days, that trying to keep up with just it (apart from politics around the research) is very time consuming.

Sometimes people don't know how to respond to a new idea. When someone is in distress and asks for help, often there seem to be people who have been in a similar situation who can respond.

I hope you are not in a state of great distress. But good that you can reach out when you feel a need for connection.

Anika
 
Gen,

I feel like you're bawling us out. I see you've made no posts yet, you joined 3 days ago and this is the first blog from you that I've seen. Give us a chance.

I think you have a lot to offer and I like some of the things you have to say. We are a very diverse group here and there are 677 active members here. That's a lot of people to put into one box like you have.

It sounds to me like you're very frustrated with everyone here already and you've written us off before even getting to know us and yet you seem to believe you're more enlightened than anyone else here.
 
:hug: gen.

I appreciate your heartfelt response and I really do like being reminded that I am not my body.

Welcome to the Phoenix Rising Forum!! :balloons: You do fit in here and we are lucky to have you. :D

tee
 
HIi Genevieve,

I'm sorry you felt sad and ignored.

Yes, I think this condition that I've lived with since I was 10 was changed my outlook and approach to life compared to what it would otherwise have been. I seem to think differently to most people now, but I did as a child too.

I'm more aware than most people that this particular life of mine will end but also more aware of the circle of life.

Like you I continue to put effort in to improving my life and my health too, look for the beauty and joy that is there in every day... ok some days it seems well hidden, and make efforts to relate to the wider world. Fear, anger, frustration etc are human but can be unhelpful, particularly if they start to become the lens through which we see the world. I endeavor to be kind to myself, gently acknowledge why I feel as I do, let it flow and attempot to do the same with others.

And I agree we are all one, different aspects of the whole, interconnected and interdependant.

I'd forgotten this but in an International relations, almost 20 years ago (eek!), I remember choosing to write my assignment on Islam. My tutor commented that the sense of I conveyed a very powerful sense of the Oneness of Islam and that suggested I continue to study it. He also noted that I didn't answer the assignment title as set, but oddly gave me a 1st for it nonetheless. He was very tight with his marks. So 2 options (maybe), he was transfixed by my beauty (unlikely), or he was bowled over by the power of Oneness ;):D

BTW this is the first blog I've responded to.

Take Care,
Willow
 
"So I posted this blog (rest your mind) and I have received no comments. "

Honestly Gen, personally I usually don't respond to anyone's blog because I often don't feel up to it. I LOVE reading the blogs when (due to brain fog) the rest of the forum doesn't make sense. The blogs are beautiful, short & fun. That does mean I'm one of the many 'views' on several (all!) blogs, but I don't leave a comment. I'm so sorry -- I know it's great to get feedback/ be appreciated! Remember when you post that there's me, and probably 20 others, who love reading but just don't feel well enough to respond. Your blogs ARE appreciated.

Actually, all over the forum/chat/blogs, there are people who love to be here and can't write much.


"A few days ago my roomate gave me a speech on if only you could see yourself healthy then you would be...I know that people are so afraid to wake up one day in pain just like us."


Awe...
*sends you a virtual hug*
Yes, I think there is fear in people's lack of understanding. It seems like the less serious the disease/illness the easier it is to comprehend!

I hope you enjoy it here!
Take care,
Elvina :)
 
Hi Gen,

I'm pleased to see you've received an excellent response, perhaps now some are understanding you a bit better. I read your first post and did not quite know how to respond. It cut pretty close to the bone so to speak.

To answer your question
"let me know that this illness has provided you with some sense of the bigger picture. We are all one." (sorry never have figured out how to do quotes properly)

oh, yes. I am the caregiver in our family and the last 10 years have forced me to slow down, pay attention, and yes, truly understand the oneness. My husband and I had 20 great years of adventure before CFS, and I've come to think our time together really was all about the lessons we both needed to learn from CFS. I sure as heck have not figured out what they are yet - but know my eyes are much more open to spirituality than ever before, simply because I cannot help but know of the many times 'God' has carried us both in the last 10 years.

What's really weird is hubby is resisting embracing the possibility for overt spiritual growth in all of this and I just need to let him be. His path is not my path - but I seem to have got the better deal here on two counts 1. I am not the one suffering 2. I am grateful for the growth I've had and seeking more. hmmmm. He has grown an immense amount as well (ya kinda have to) but perhaps it is just the severe brain fog does not allow the luxury of really figuring it out or talking about it. hmmmmm.

Big hugs and welcome. There is a wonderful bunch of people here.
 
Gen,
I didn't even know there was a blog like this with many peoples entries....
I thought I was reading my own words when you mentioned Eckart Tolle as your biggest
help! It changed my life (The Power of Now) and I keep the copy, as well as A New Earth with important pages marked by my bedside - still, 4 years after reading it first. I recommend to everyone. First big discovery with him was how to transcend pain and then seeing all the other balony we let run our minds and lives.
I never reply anywhere because i am not up to it. But i do want to share my improvements with you all and like you, Gen, want to focus on HEALTH not the opposite. In 2009 I stated with gratitude several times a day, "Thank you for my healing". Learned that from "The Secret". Also read things such as "The Power of The Subconscious Mind" by Joseph Murphy and followed the Laws of Attraction etc. Feel much better, calmer, less fearful and happier. Must add that meditation, first learnede a la Tolle, id the back bone as well as gratitude.
All the best, More later,
Cristina
 

Blog entry information

Author
kurt
Read time
1 min read
Views
1,410
Comments
7
Last update

More entries in User Blogs

  • Daily doodal dandy
    Just testing this out
  • Covid day 75
    Well since my last few updates I started to suffer from exhaustion and...
  • Pray
    If you pray, will you pray for me please? I have covid pneumonia and...

More entries from kurt