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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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  1. O

    Anyone have a personal assistant or caregiver?

    i thought id update u guys cause im a little bummed out and felt like sharing. everything was going great for the last while with the caregiver. she was kind, thoughtful and took a lot of chores off my plate so i could focus on recovering and working on projects and things. i dont drive and she...
  2. O

    Symptom Interpretation While Finding Limits

    Hey @jleblanc3 sorry to hear about your illness, when you say diagnosed do you mean with ME/CFS? Ive had CFS among other things for my whole adult life and i reassess and redefine what my limits are based on how im doing at that point in time. assuming you have CFS Your limits will change based...
  3. O

    Anyone have a personal assistant or caregiver?

    UPDATE been working with my new caretaker for 2 weeks now. she is so awesome. we get so much done and she is so happy with the perks and pay she has often said she feels bad taking money from me, while at the same time i wish i could afford to pay her more! honestly now im worried im gonna...
  4. O

    Embarrassed to use a cane

    UPDATE Been using the cane for a couple weeks now. i now see it as an essential part of my health toolbox. it helps me so much and there have been times where i wouldn't have gone out and i did anyway but with the cane. it makes me feel safe stable and less self-conscious when im moving really...
  5. O

    Anyone have a personal assistant or caregiver?

    @tudiemoore @Jennifer J Thank you for you kind thoughtful replies. I got an update on the situation Had a great day with her help, shes coming back tomorrow afternoon to help some more and join me and my partner for dinner (shes cooking/cleaning) shes totally cool with giving me a copy of...
  6. O

    Anyone have a personal assistant or caregiver?

    i think your right @Alvin2 im just having alot of trouble at the moment and i am not really sure how to figure all that out. i cant afford minimum wage and i could really use the help so my thought was to just put it out there and see who responded and this women seems very genuine. i guess time...
  7. O

    Anyone have a personal assistant or caregiver?

    @Alvin2 the way i see it she poses the same risks of lawsuit as letting anyone into the home, (assuming she is in good faith and all) as far as her reporting income thats on her end in my opinion. as far as i know she is reporting it. lots of people hire others under the table and do fine. I...
  8. O

    Anyone have a personal assistant or caregiver?

    @Jennifer J What is the site you used to lookup court and arrest records? Update on Caregiver situation. She just came over for dinner with me and my parents and to do a some light housekeeping. everything went pretty well. shes really nice and is very accommodating. she is currently living...
  9. O

    Embarrassed to use a cane

    some people carry there surfboards on the side of there bikes, maybe you or a friend could rig something up with a foldable walker? that would be pretty sweet.
  10. O

    Embarrassed to use a cane

    My new cane arrived about a week ago and I have been using it out and about. I had a brain fog moment with a cashier while ordering, in the past most people get frustrated and think I'm just stoned but this time the guys saw the cane gave me a big smile and said "that's alright just take your...
  11. O

    Anyone have a personal assistant or caregiver?

    UPDATE: Had a meeting with my first Craigslist response and it went amazing. she took care of her disabled son until he passed a few years back and is about to start nursing school. apparently ihss doesn't pay her too well and the 50$ +gas for 5-8 hours of work sounds like a great deal to her...
  12. O

    Anyone have a personal assistant or caregiver?

    Thanks for your replies guys, I think your right @trishrhymes it would be better to have a couple of people each with there own skillsets. Unfortunately I can't really afford more than 1 day per week or to use an agency so I'm hoping to build a good working relationship with just the one...
  13. O

    Anyone have a personal assistant or caregiver?

    Im trying to hire a personal assistant/caregiver combo person for 1-2 days a week. anyone have any experience with hired help? my hope is that they will be able to be a caretaker on bad days and help with projects/gardening on good days. Id love to hear any tips or thoughts on this. Thanks.
  14. O

    Always hungry and high triglycerides

    I got a coffee alternative. Yerba matte, green tea or matcha tea if you need the caffeine replacement. If we are just talking flavor try chicory root tea chicory root doesn't have caffeine but it tastes and looks like coffee. tastes great with some nut milk and a little palm suger.
  15. O

    Embarrassed to use a cane

    Just to update you guys Ive been using my old one around to house since my last posting and have talked with my parents and asked them to not make a big deal about it. its been helpful for trips to the kitchen/bathroom and im going to take it with me whenever i leave the house feeling less than...
  16. O

    Always hungry and high triglycerides

    Diet has a big effect on health. Personally I feel healthier in general and with the cfs if I eat lots of good fat adequate protein and as many veggies as I can get down. eating to many carbs make me feel sicker and less healthy as a whole especial simple carbs like white rice potatos and suger...
  17. O

    Anyone tried ketamine?

    I Have Been Using Ketimine Treatment for a couple years now. at first it was every 3 weeks with noticeable decline in feeling on 3rd week before treatment now weather because of increased dosage, consistent treatments or both i am up to 6 weeks in between treatments with 1 week of less effect...
  18. O

    Suggestions on How to manage organizing pills?

    thanks everyone for your suggestions @Luther Blissett that ez dose stacker looks like it would work you got around the same amount of stuff as me in there. I'm gonna look for it online. Thanks @AndyPandy I've used that kind before. Even with the largest size I could find it took 5+slots for...
  19. O

    Suggestions on How to manage organizing pills?

    I Take 19 Vitamin/ supplement pills every day BASE Plus I have 4 or 5 others i take as needed. about half the pills are around 00 size. I really Struggle to keep them organized and remember to take them every day. I really want a pill sorter/ daily organizer that can manage my quantity. right...
  20. O

    Embarrassed to use a cane

    I feel so much more confident about the idea of using a cane after hearing from all you. Ive been having trouble getting around today so i found the old cane and started using it this afternoon/evening and it does feel more comfortable getting around. Im going to buy a lighter/folding one later...
  21. O

    Embarrassed to use a cane

    Thanks for the support guys. Next time i feel like i could use it im gonna go for it! I thnk im also going to look into a folding one i could keep in my bag so i can go out without holding a cane but still have it available in case i over do it. -Wonko Thank you for the suggestion but i think...
  22. O

    Embarrassed to use a cane

    Lately ive been having a really rough time and ive had been having moments where i feel like a cane would be a big help and make me feel more physically secure/stable but at the same time im really embarrassed to use one at this point in my life. im in my 20s and dont look sick and ive recently...
  23. O

    Kick scooters and electric bicycles?

    just realized your in Boston. im in California so you should look up your local e-bike regulations for where you can and cannot ride it and if there are different e-bike classifications or not.
  24. O

    Kick scooters and electric bicycles?

    I have an electric bicycle and love it. I used it for a couple of years and found it to be less tiring than taking the bus if the weather is good. I haven't used it much this last year because i let my lithium battery get too low and now it has half the range it used to. (it used to go for...