The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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If you had a few spare bucks, what would you buy to ease your condition?

Discussion in 'Lifestyle Management' started by Skippa, Apr 5, 2016.

  1. Skippa

    Skippa Anti-BS

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    Let's put a limit, say 2000 pounds/2000 dollars.

    What treatment, lifestyle aid, adaptation or other purchase(s) would you make to help you out or make your
    Iife that much better?
     
  2. Daffodil

    Daffodil Senior Member

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    id try to see dr. demeirleir or at least get some tests done.

    if you don't mean doctors, I would use it to get IV glutathione maybe...

    xox
     
    AndyPandy, Valentijn, merylg and 5 others like this.
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    A date with Bailey Jay! :p

    [​IMG]

    Well, it would be "life changing" as I'd probably keel over and die cause like, just tottering around the house is as much as I can do now.....but I'd die with a smile!: D

    (not in anyway a dig a TS folk, she's just very fun and cute and I like being outrageous :) She reminds me of Pauley Perrette who's a heck of a gal.)
    or it could be Karen Gillan! but hey...even thought of that leaves one in a swoon, lol


    Anyway, for serious....getting a bathtub fitted that can also be used as shower, with side opening door in the tub or such.
    Alas had to get bathtub replaced with walk in shower years ago for Mum, but it was by far best and only way for me to get any kind of relaxation at all.
     
  4. u&iraok

    u&iraok Senior Member

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    Infared sauna.
     
    leela, luludji, helen1 and 3 others like this.
  5. Luther Blissett

    Luther Blissett Senior Member

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    I'd hire someone to fill in forms and handle any appeals.

    Then, I'd hire someone to translate Broon/Oor Wullie cartoons for me. :whistle: (I've just learnt what a 'paddock' is)
     
    picante and Skippa like this.
  6. TiredSam

    TiredSam The wise nematode hibernates

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    Germany
    Dunno who those people are you're going on a date with - the like is for Basil Brush. I've said "boom boom" at the end of a bad joke a couple of time in Germany to my kids - they just look at me with blank faces. I usually follow it up with "please yerselves!", but they've never heard of Frankie Howerd either.
     
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  7. Amaya2014

    Amaya2014 Senior Member

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    Too bad 2000 wouldn't go too far. I'm with @Daffodil in seeing 1. Dr. Demeirleir, 2. a personal assistant for a couple of weeks or 3. Support ME/CFS foundation
     
  8. SickOfSickness

    SickOfSickness Senior Member

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    If I could, I would use it on general living expenses instead of health. That would make me less stressed, which helps my immune system.
     
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  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    lol, we're old school ;)
    Ah, Saturday's as a kid in the evening in the 70s, sports finished then you had Basil Brush, or Generation Game, then Doctor Who....awesome! :)

    Frankie Howard was a *RIOT* :p
    did you ever see one of the last things he did, a re-make of his "Up Pompeii" stuff?
    O M G....was about crying with laughter at it, buhaha!! :D
     
    TiredSam likes this.
  10. belize44

    belize44 Senior Member

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    I would spend it on a week in an Ayurvedic spa where they do gentle detoxing of the whole body, complete with oil massage.
     
  11. Jennifer J

    Jennifer J Senior Member

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    @SilverbladeTE , funny. I think you're on to something. I'd take a date with Gerard Butler.:) He's such a rascal and he's single now. Other choices, unfortunately are married such as Josh Holloway (Sawyer from Lost).

    My seriously though would be as @Amaya2014 except I'd have the assistant a couple hours a week for as long as the money would last. Also, I'd throw in having one good meal cooked for me.

    Thanks @Skippa!:) It was fun to dream.

    Edit: spelling Silverblade right.
     
    Last edited: Apr 5, 2016
  12. Sushi

    Sushi Senior Member Albuquerque

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    Someone to clean and organize!

    On the gadgets end, I just ordered a really good HR monitor that tracks HR 24 hours, sleep quality--probably records what you are thinking too!
     
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  13. Gingergrrl

    Gingergrrl Senior Member

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    I just did this last week and purchased a brand new motorized wheelchair for $1500 after being granted a few discounts by the medical supply store who were very kind. It has been a game-changer in my ability to go anywhere in the apt without someone having to push me. No matter what I need or where I need to go in the apt, I can now do it on my own. Best $1500 I have spent since getting this ill.
     
  14. Skippa

    Skippa Anti-BS

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    Thanks for the replies all.

    I like to make wish lists sometimes to give me things to aspire to//look forward to. It's always nice to find new things to add :)
     
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  15. luludji

    luludji

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    Bed coach kitchen
     
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  16. Apple

    Apple Senior Member

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    I would buy a lightweight electric wheelchair (like a foldawheel or a kdsmartchair) so I could leave the house by myself for the first time in 11 years. That would be awesome.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    @Apple Is it an option to buy one? I have only used mine inside the apt so far but have not left my home on my own since the end of 2014. When I get brave enough, I will test out taking the electric wheelchair down to the lobby of our bldg by myself. Am not strong enough to open our front door, and couldn't hold it open while maneuvering the chair, but if someone helps me with that part, I am certain I could get it to the elevator and down to the lobby (which would be very exciting in my world LOL!)
     
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  18. Apple

    Apple Senior Member

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    @Gingergrrl Not really. I am trying to save up some money, but that's more for seeing an M.E specialist as my health is poor and there is no help where I live. Plus I'm 95% housebound so it just wouldn't get used enough to justify the cost, unfortunately. The cheapest one I can find that's suitable is £1800-£2000 ($2500-$2800) which is a lottt of money to me. It's more expensive than my mums car! :wide-eyed:

    I'm so happy that it's improving your quality of life though :)
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @Apple It might be possible to find a cheaper one if you do some research and I have a thread on PR (can try to find it if it would be helpful) where people gave me a lot of great ideas. The one I wanted I was originally told would cost $3500 which we declined but then I found it for $1500 which is pretty reasonable for a brand new motorized chair in the U.S. I have no idea how this compares to other countries. I am housebound except when driven to doctor appts or important family events. I am using the chair exclusively inside the apt so far to get from room to room so no one has to push me in my manual wheelchair. It not only brings independence but if everyone is busy, not home, or sleeping, I can still move about as I need to which is amazing.

    Thanks and I can't rave about it enough LOL. The only thing better would be if I could walk normally again on my own.
     
  20. Valentijn

    Valentijn WE ARE KINA

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    If I didn't already have my mobility scooter, that would be my #1 choice. I've had wonderful experiences with it and not a single regret.

    #2 - Stair lift, so I can go up and down the stairs without being totally wiped out by it.

    #3 - Whole Exome Testing, to see what's lurking within
     
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