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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. mirespada

    Waxing poetic about fatigue

    This past week, I have had a flair of symptoms. This flair has been worse than my previous ones and I can barely get out of bed. All I want is SLEEP! I have become "the person in the room" to my family...hopefully temporarily. So, since it has become all I can think about currently, I want to...
  2. mirespada

    Comment by 'mirespada' in 'My research obsession'

    I did mean that and I edited my post. Thank you!
  3. mirespada

    My research obsession

    After I got my diagnosis, even with the crazy class they put me in at the Mayo Clinic (see earlier blog entry: My Experience in the Jacksonville Mayo Clinic's CFS program), I felt both elated and empowered. Before, if I researched my symptoms to find an explanation, the medical community would...
  4. mirespada

    An Urgent Question

    Thank you for your concern. I got him in touch with the head of the MEaction's New York branch which helped. He is over 18 which actually, makes the situation a little tougher. He is not going to be admitted, luckily, but is still having a tough time...they want him to take all sorts of psych...
  5. mirespada

    The Undiagnosed

    I would have to argue that although ME/CFS is a really hard disease to have because of the general misunderstandings and abuse we put up with from those around us, being completely undiagnosed but suffering from mysterious symptoms is actually harder. I spent six and a half years in that state...
  6. mirespada

    Comment by 'mirespada' in 'An amusing situation'

    I would say this is where a difference in situations really changes a persons opinion. My family really didn't believe I was sick and treated me as a lazy nuisance, UNTIL they saw me pass out. Then, when that happened, all of a sudden they treated me like I was made of glass and could shatter...
  7. mirespada

    An amusing situation

    Seeing is Believing! An idiom that everyone has heard at some point in their life. I bet, as a person with an invisible illness, reading that line made you a little frustrated and angry for a second! Those words cause an instant negative response within me, just reading it! Although people...
  8. mirespada

    Being a mother with this illness

    I am having a hard day today, both with this illness and with being a mother. Last week, I flew to San Francisco, CA from Portland, OR to do my yearly consultation with Stanford's ME/CFS program (I promise to do a later post about my experiences with the program because they are amazing!) . My...
  9. mirespada

    An Urgent Question

    I really want to thank everyone who has taken the time to think of my friend and what they can do to help! It really has moved me to see how the community is reacting to his plight. I have been in constant contact with him these last few days and he is overwhelmed with happiness knowing that he...
  10. mirespada

    An Urgent Question

    My friend does not want to give any personal or location information about himself. He is in such a delicate situation right now and is in fear that if his parents catch wind he is seeking help, that it will just get worse. So, unfortunately, I am unable to say more than what I have said on...
  11. mirespada

    mirespada

    I am a 29 year old mother of two beautiful girls. I have had ME/CFS for 8 years. Before I got sick, I was an archaeologist for the Forest Service (the youngest professional archaeologist in the Southwest!). I now live with my very supportive family: my mom, my dad, my sister, her boyfriend, my...
  12. mirespada

    My Experience in the Jacksonville Mayo Clinic's CFS program

    As I have mentioned in my introductory post, I was undiagnosed for 6 and a half years. During those years, I was completely abused by the medical system and disillusioned about how much medicine and patient care has advanced. I have stories (oh, do I have stories!) about that time and my heart...
  13. mirespada

    An Urgent Question

    He is 28. I am sorry I haven't answered that!
  14. mirespada

    An Urgent Question

    Thank you for all your wonderful suggestions. I will definitely pass them onto him when I talk to him next. Unfortunately for him, he has shown his parents all the documentaries (Voices in the Dark, Unrest, Forgotten Plague) and I have sent him plenty of articles from prominent sources (The...
  15. mirespada

    An Urgent Question

    My friend in New York (I live in Oregon) and I connected on a pen pal site because we both have severe ME and are unable to socialize in person, so instead exchange e-mail and texts with each other. His parents, unlike mine, are completely unsupportive of his disability and don't believe he is...