Finding 21-30 y.o. disabled friends?

Discussion in 'Fibromyalgia Main Forum' started by skeptik2, Aug 10, 2009.

  1. skeptik2

    skeptik2 Member

    As many of you know, I recently had my 21 y.o. M.E. dau. (sick since age14) come live with me so I can take care of her.

    Problem: She needs to get around other people her age! She's 20 miles from the nearest downtown area, can't drive. Needs others who understand her inability to keep plans all the time. Feels only others with chronic illnesses would understand (probably very true). I can take her out of the house to therapy, drs, movies, some tourist areas, etc., but she needs FUN!

    Any ideas? Websites? (She's online 6-8 hrs a day, playing games with others, but are there others with chronically ill people? MS people would be an ideal match, I would think...

    Let me know, ok?

    Love ya,
  2. isiselixir

    isiselixir New Member

    disabledpassions or disabledunited dot com
    she can search for ppl in her area on there

    good luck!!!
  3. skeptik2

    skeptik2 Member

    It's really late, but want to thank you so much for this info.

    I will pass these sites on to her; hopefully she can 'connect' with young adults in our area.

    Again, many thank yous and hugs!

  4. water_mad

    water_mad New Member

    I have no idea but since i am in the UK and most people on this board arent i am guessing i am not close.

    but i wanted to tell you about how i met others. I got ME/CFS aged 14, it got better for a while but got really bad again when i was 18. I spent a few years in bed but then got a little better i wanted to have someone to talk to.

    I managed to find one other person who lived near me via the message board on the AYME website, i spoke to someone on there who told me of someone in my area and it went from there. We talked over the phone and decided to set up a group for people aged 18-30 who had ME. We actually thought it would be just the two of us and we met up at the local pub, drank mineral water and ate chips and two other people showed. The following month there were 8 of us and one of them lived down my road (the closest to uni to limit the amount of walking) So people crawled out the woodwork.

    People with ME think its not possible to make arrangments because they cant keep them, that is a lot of rubbish. When you are at the stage where you dont have any commitments making one or two is easy, because although going out for maybe 2 hours might make you tired you can rest before and you have the days afterwards to recover. The issue is when you start making lots of commitments and ones on rest days. Everyone has days when they cant make commitments (even people without ME) the hardest thing for people with ME is meeting people after you havent had to for months/years. Its potentially stressful because its new and out of your comfort zone which is scary until you realised everyone else there is as scared as you.

    Good luck with getting your daughter out, 6-8 hours on a computer a day takes lots of energy.

  5. skeptik2

    skeptik2 Member

    Yes, kamina, you are probably not in S. TX, LOL..odds are against it; wish you were, thanks!

    water, you're so right; but, I have given her the suggestions here, and I hope she uses some of that time on the computer to try to connect with others. She does have social phobias, but your suggestions are right on; all she has to do is make the effort,and I bet she'd find friends. I can only lead the horse to the water, can't make it drink, but hopefully she'll get 'antsy' enough to try!

    Thank you going to delete this thread tomorrow, as I'm busy filing for her SSDI, and I don't wan't to leave any of you unanswered, ok?

    Luv n Hugs,
  6. skeptik2

    skeptik2 Member

    I typed a reply Wed nite, and the transformers behind our house blew out just as I was going to hit submit! Out for 2 hrs and just now cable co. had to be here to get me back online.

    My grdau is not unhappy; she does have a lot of fun online, we can hear her laughing and talking to people in another country online, and only she and her therapist have suggested she try to get out once a week; well, the therapist may have bought into to CDC crap that GET and more activity will cure one, I don't know yet...she's only been going for 4 weeks now.

    Three of us live here, all with ME, so we know the cross of bearing the 'unknown', whether we will collapse in the middle of an activity, believe me. We get exhausted just talking to each other, LOL, but that's the truth. It's wonderful in a way though; we all understand if someone just disappears suddenly into their bed! No problem. But we are in our 60's, and she is only 21; she would like to be able to go places with others her own age. The movies are only 6 blocks away, Seaworld and Fiesta Texas a short car ride; 10-15 min. away. I have about 4 other serious diagnoses, and I'd love to take her to these places, but I can't do many of them.

    A larger problem is we have only one car; so, our calendar is full with one of us needing to go to drs, grocery shopping, other things which make it difficult for me to be able to drive her everywhere she needs to go. She can't drive, has anxiety and panic attacks with the heavy traffic; it's too sensory-overloading for her right now. Hopefully, with our care (she hasn't had any understanding or medical care in 7 years) and the right supplements and/or meds, she'll be able to control these problems.

    I, too wish you were near us; you could come over and lounge around on the futon sofa; that way, if you 'crash', we would just open it up into a comfy bed and give you a blanky and pillow, LOL!

    Thank you all for your responses, I really appreciate it!

    Hugs a many,