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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.
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Help Dutch professional Ballet dancer with M.E.
- Thread starter Grigor
- Start date
Sushi
Moderation Resource Albuquerque
- Messages
- 19,935
- Location
- Albuquerque
My experience is the same as @Valentijn's--strattera and yohimbe helped!
Great video! Thank you for making it. I hope you didn't get too much PEM from the process. I'll share it too.
Sushi
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
I cant watch your video due to my dial up connection but you are lucky (if one can call it that) that you got a ME/CFS diagnoses as Ive found that often athletes, doctors are very reluctant to give this diagnoses too.
I have a ME cousin who was at the Institute for Sports on scholourship, she was hoping to make the olympic team. She thou at only 17 developed ME (she ended up having to leave there and move back home to live with her mother who became her carer)
To this day she doesnt have a ME or a CFS diagnoses. The doctors who she saw wouldnt diagnose this, she ended up on a disability pension based on the amount of symptoms she had with the diagnoses listed as "unknown". To this day she wont believe she has ME/CFS and wont even look into it as the doctors all told her it was just a psych and not a real illness and she couldnt have it as she was a athlete.
I have a ME cousin who was at the Institute for Sports on scholourship, she was hoping to make the olympic team. She thou at only 17 developed ME (she ended up having to leave there and move back home to live with her mother who became her carer)
To this day she doesnt have a ME or a CFS diagnoses. The doctors who she saw wouldnt diagnose this, she ended up on a disability pension based on the amount of symptoms she had with the diagnoses listed as "unknown". To this day she wont believe she has ME/CFS and wont even look into it as the doctors all told her it was just a psych and not a real illness and she couldnt have it as she was a athlete.
NK17
Senior Member
- Messages
- 592
Great interview @Grigor, I hope you'll have access to treatment in the Netherlands soon and put your ME into remission.
I've shared on Twitter and will share it with family and friends who are familiar with ME.
As a teenager I was an amateur ballet dancer, I used to attend a school which was affiliated with the Royal Academy of Dance in Italy, but had to quit dancing when I came down with Infectious Mononucleosis.
I know how difficult it must be for you to go from being a professional dancer to a full time ME patient.
Hang in there.
I've shared on Twitter and will share it with family and friends who are familiar with ME.
As a teenager I was an amateur ballet dancer, I used to attend a school which was affiliated with the Royal Academy of Dance in Italy, but had to quit dancing when I came down with Infectious Mononucleosis.
I know how difficult it must be for you to go from being a professional dancer to a full time ME patient.
Hang in there.
@taniaaust1, it also took me a while (2 years) before I got the diagnose. They thought it was the CMV virus. Which is possible of course. But by doing more research I went to see several ME specialist and got the diagnosis.
Hope she can see the video.
Hope she can see the video.
@NK17, the weird part is that although I miss dancing in my living room or in a club the dancing professionally is somehow secondary. I rather would be able to provide for myself or do things without help. As mentioned in the movie I haven't been in a grocery store for more then a year. Crazy stuff.
NK17
Senior Member
- Messages
- 592
@Grigor I totally get what you mean ...
I too haven't been in a grocery store, pharmacy or any other type of store in many, many months ...
I can't drive anymore, my world has been shrinking at an exponential rate.
I stay mentally sane only b/c I've a very curious mind, a loving and supporting family and an ME doctor who is trying his best to help.
Apart from ballet dancing, which was your profession, you must be missing every possible human activity that we PWME cannot do anymore.
Being ill with ME is an everyday lesson and struggle with keeping your spirit high while adapting to a ridiculously low level of activity and terrible low quality of life.
I'm looking forward to the day when we'll have access to Centers of Excellence for real treatments and also to a non ballet dancing party
I too haven't been in a grocery store, pharmacy or any other type of store in many, many months ...
I can't drive anymore, my world has been shrinking at an exponential rate.
I stay mentally sane only b/c I've a very curious mind, a loving and supporting family and an ME doctor who is trying his best to help.
Apart from ballet dancing, which was your profession, you must be missing every possible human activity that we PWME cannot do anymore.
Being ill with ME is an everyday lesson and struggle with keeping your spirit high while adapting to a ridiculously low level of activity and terrible low quality of life.
I'm looking forward to the day when we'll have access to Centers of Excellence for real treatments and also to a non ballet dancing party