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Thank you so much

Hello ME/CFS compatriot here from Malaysia. The path is getting dark after 10.5 years. I too am hoping to pursue medical assisted suicide all the way in Switzerland for an exorbitant amount of money but doctors don't want to discuss the issue. It breaks my heart how some of us suffer. Sending my love & thoughts to other facing a similar predicament. By no means does this illness define who we really are. Thank you ME Goddess for speaking up on this aspect.

Thank you for sharing your true & honest feelings. I am bedbound mostly for two years now. My family doesn’t understand & has become increasingly frustrated. I am definitely in very low percentage of pre Me/CFS functioning. I have lost everything & everyone as well. I appreciate how straight up you are, again thank you.

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Yes, I get it❥❊~

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Hey there I don't know who u r but I know u hv CFS I just want to tell u that I had this and I hv recovered from this within 3 months of using herbal medicine (ayurvedic medicine). I helped 3 people more they are doing fine completely normal. I can tell you about those herbal medicine if u wants to know . I just can't see any one suffering this horrifying disease .

Sorry to hear, Berenice, hope you will be a lot better soon. You are very brave sending love and soft hugs to you.

love to u.

Sending you hugs, you are amazing! Thank you for everything that you do. You are a ray of sunshine even when you are having a difficult flare up. I hope you start to improve soon. A better day is on its way. Take care xx

Sending hugs sweetie ❤️ well done!

Well done for getting through that. Hope this crash passes soon xx

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You've already been through this in smaller doses. Every loss is a defeat, and you've mentally dealt with it in time and with perspective. This is the totality of the experience arising. I have these feelings too. I'm languished, but trying to throw out societal norms that are not founded in our experience. We are our own. Our experience filters us to our core values. We cannot pretend or placate. We don't need to force ourselves into a silent retreat or fasting state to throw our egos. You have only have moments with your children, but those moments and what they are learning about life and compassion are deeply meaningful. Thank you for sharing your journey. Your videos have helped me over years to break the isolation. You have so much value, don't use external measures to judge it. You are dealing with it with the tools you have. I understand the hours, I have them too. We have to love ourselves more than anyone else can and despite it all, and just like you would admire your kids in conquering challenges...you know what you have been through. It may not be recognized by others, but it is real. This M.E. Goddess is a warrior.

Good to see you again:)

Hi:) God advice. Take care!

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All of this is brain inflammation IMHO. I've had this illness for many years. It's something about the immune system triggering our neurological system. It's beyond sad to see someone with your talent, and a mother, restricted because there is so little attention given to this illness. I am doing better at this moment and I am so appreciative of the moments of connection your videos have provided in my darkest times. And, you give, even in your dark times.

You still ARE an artist.

Just a wee bit of info...Jodi Bassett was an Australian artist, graphic designer, writer and patient advocate...she made the Hummingbird Foundation. She died in 2016.

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~❊❤❊~ What a lovely couple you are. Your children are very fortunate.

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~❊❤❊~ You made me happier watching you. I too am in a deep purple funk:) I am in my 33rd year now and I still try to 'control' my difficult feelings but there are no ways round but through. We are between a rock and a bloody hard place and it never gets any comfier. Ho hum, feeling with you.

We get that way when the condition comes on strong. It affects our emotions. I allow the crabbiness/anxiety/feelings of doom to take their run. When they first start it's super upsetting, but then I try look at it like PMS and try to understand why it's happening, knowing that it will end. I try to remember that the mood is not me, it's the illness. This perspective doesn't help the mood, but helps me feel less bad about feeling bad. Hopefully that makes sense. My motto has always been, "Maybe tomorrow will be better.'" It helps me carry on, as does a cuppa. You are lovely in your honesty about your own struggles. You don't pretend, you just are, and that is refreshing even in extra hard times.

Hugs hun

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M.E.Goddess--Thank you for this so much. You expressed this, our predicament, so well. I have had M.E. since age 16 which is 35 years now. To me, my life is too impossibly difficult now and I have very little quality of life. In the past two years I know I am creeping closer and closer to that "line in the sand". For months now most of my thoughts as I lie alone in my dark, silent room is "How can I get out of here." I too wish I could have medically assisted suicide, because, as you said, it is so sad and scary to have no choice but to do this completely alone. I hate my life and I hate how I have to end my life. I hate that I have no doctor I can talk to who won't lock me in a psych ward if I even mention suicide. My family has never acknowledged the severity of my illness and will surely write-off my suicide as "she was just depressed." To see you and hear you speak reminds me that I'm not alone. Yet, in reality, in many ways we are completely alone. Blessings, Love and Gratitude to you my Friend 🙏💕💛

Thank you so much for this... It came at a time where i too feel like i lost my purpose. I have chronic fatigue syndrome and fibromyalgia and had to give uo my job as an ece teacher. This condition makes you feel like you have lost everything that was meaningful in life. I am learning how to cope with this condition and be a mum and wife. Im determined to find my purpose again. I think i know it i just have to get strong enough to do it. By tue way i too have a youtube channel in a area of my passion. Autism. Would love it if you took a look. Again thanks, i needed to hear this today. th-cam.com/channels/ioTvY2oSt7L6IFzb_yLsKw.html

My sympathies. I slept through friend's funeral because of my ME, so I understand the feeling. The illness had also meant she never got to take me out for lunch, like she wanted. :-( Hopefully this is a temporary setback and you start feeling a bit better again soon.

My last crash has turned into my new normal. Glad things are looking up

Yes fish are great to watch

Thank you 😊

That was a big spoonful you used to make the video. No you are not alone, though sometimes it might feel that way. Sending love and healing energy your way.

ur voice is so lovely

Sending you gentle hugs! Going through a flare up with lots of generalized inflammation right now too. May it pass quickly for us both 💜

Thanks dear <3 God bless you

I needed to hear this today- to remember that emotions often exist together and it is ok to feel them and accept that the situation sucks right now and just accept that, not say “but (positive outlook here)” Thank you!

Bernice I feel your attitude is very wise and profound, for many people and many situations. I do appreciate your sharing both good days and bad days. Blessings

Yay! Love that you were able to enjoy a few moments outside!

Yay!!! I’m so happy for you and your family!

May want to look into mast cell activation syndrome as well if you haven’t already? Another disease that can cause crazy food issues. So glad you are finally getting good info from a doctor who truly is interested in figuring out their patients medical concerns. It is amazingly validating when they have these answers and can just tell you them because they have actually done the research and actually accept the basic fact that if a patient tells them something is an issue, then it is worth figuring out fully 💜

Hiya