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What do you DO all day? (on good days)

Discussion in 'Living with lupus' started by christianirc, Mar 23, 2018.

  1. christianirc

    christianirc Brenda

    I'm sorry if this is the wrong forum. It seemed the best fit, but I could be wrong.

    What do you all do on good days? I can't drive and I live with my blind mother. I have a caregiver I hire to cook/clean/laundry and a driver I hire to take me to appointments. I just sit here all day. There are only so many video games, movies, books out there. Many many days I can't get out of bed, but my new meds seem to be giving me more good days (thank you Lord) and I'm bored out of my mind. The pain and weakness (I also have Chiari which has me in a wheelchair because of neurological issues) keep me from anything really physical. The wheelchair keeps me from taking walks etc. I live in a really rural place... just looking for advice.
    Lupusdude likes this.
  2. lazylegs

    lazylegs Moderator

    Hi Bren,

    It sounds like you need a hobby like knitting, artwork or something you can do in your chair. You might also consider being a part time volunteer. Not all volunteering is physical. The local hospital would be a good place to inquire.

    Take care,
    Surferboy and Lupusdude like this.
  3. christianirc

    christianirc Brenda

    Thanks for your response. The closest hospital is 50 miles away and I don't have any transportation. I didn't expect anyone to be able to answer it, I was just feeling down last night. I knit, but there is only so many hats you can make hehe.
    Lupusdude likes this.
  4. Lupusdude

    Lupusdude Registered

    Ooh cool! Can you post some pics of the hats? I tried knitting hats a while ago, but lost interest. Now I paint in my free time. I'm not much good at either hobby, but they're good distractions. I do lots of reading now and joined a book club. It's a mystery book club so the woman organizing it picks out the new mystery book each month. They're not always to my liking so I pick up something that I do like and read that along side. Anyway, hope your day is going well.
    Surferboy likes this.
  5. christianirc

    christianirc Brenda

    I believe to a couple of book clubs. I will upload some pictures when I can find some. I donate them to the chemo center so I don't have any right now. Thanks for the reply :)
    Surferboy, Lupusdude and wolf1 like this.
  6. debatat

    debatat Moderator

    That is a lovely idea, how kind to donate your hats to them.
    Lupusdude likes this.
  7. Jessica1

    Jessica1 Moderator

    Hello Brenda, I also knit and found there were only so many garments I could foist onto my grandchildren:roflmao: I now knit baby clothes for a charity in the Gambia and last week I decided to learn to crochet so I'm also making blankets for the homeless. It's a nice feeling to help others while we keep ourselves going isn't it? Have you thought about doing jigsaws? That's something else that you can do as you feel like it.
    Lupusdude and wolf1 like this.
  8. Smile Of Life

    Smile Of Life Duncan

    Do you have a skill you could help people with? A few years ago I was helping people on a jobsite to improve their resumes for free. It felt great cos a few people managed to get jobs after years of failing. Anything you could volunteer to do helping others from home like that? A skill or passion from a past life that could be used in a different way?
    Surferboy and Lupusdude like this.
  9. Em19

    Em19 New Member

    Hi Bren,

    Since it sounds like you have some good hobbies like knitting, reading, etc. you could start a club and invite a few friends over to share your hobbies with you. You could start a book club or a baking club like I'm going to do (I like this idea because then you get to enjoy your treats after). :)
    Surferboy and Lupusdude like this.
  10. Surferboy

    Surferboy Registered

    FILMS! You can just sit there, feet up, pop corn in one hand, milkshake in the other. What more can you ask for :lol:

    But seriously, some great posts here guys. I would love to have some time to do some of this more often. I do bake, but not enough. I also used to offer a script reading service to up and coming writers. And, believe it or not, I can knit and crotchet :cool:

    I would recommend doing something where you get to meet people. I find that chatting take my mind off the pain (just make sure you chat to the right people though, otherwise it could have the opposite effect :roflmao: )
    Jessica1 and Em19 like this.
  11. sagehen

    sagehen Junior Member

    On my good days, I try to play "catch up." I do the chores that do not get done most of the time in my home. I go shopping with my husband or
    to a movie and out to lunch or dinner. I used to work in my garden, but being so sensitive to the heat and sun has put a big damper on my favorite hobby. I still have other hobbies that I enjoy very much. Thank goodness!
    Lupusdude and Surferboy like this.
  12. susane

    susane Registered

    Oh I loved working in my garden. Flowers, food, herbs, etc. but now I can't do much outside growing. I had herbs in my kitchen window this year. I do like to read certain things, and if I have a hard time sewing at my machine then I can do some sewing at my chair. I do like having something to do. I crochet some, and need to make me a wide brim hat since the sun is really bringing out the worst on my skin now. I would love to feel like meeting some other people, but I live in a rural area in Tn. so it makes it more difficult.
    sagehen and Lupusdude like this.
  13. Chelle Martin

    Chelle Martin New Member

    Hey Lupusdude :lol:

    It's me again, been out for a long while due to the loss of my step daughter in May 2018 from a Fentanyl overdose.

    We got dumped on by the snow machine last night, here in Chicago area. I think we may have close to 8 inches if not more. In accordance with this thread to all: I haven't had a good day in months due to a flare up attacking my right hip joint. It hurts to stand, walk, sit, lay down--pretty much anything when it comes to moving that joint. But stubborn southern girl that I am I still push myself to work, clean house and work on all the power equipment in our garage with my boyfriend. I'm taking this new supplement also, it's a glucosamine joint movement liquid you can find at Wal-Mart. I got kicked off of Medicaid October 1 last year, so I've had to cut my prescriptions for Plaquenil in half so that I have enough to last until I get insurance again. Other than that I'm alive and life is good.
    Lupusdude likes this.
  14. Lupusdude

    Lupusdude Registered

    Hi Chelle, I’m so sorry to hear of the loss of your step daughter. I wish you peace.

    Seems like we’re the only ones not getting snow this week, but the cooler weather also makes my joints ache. Glad to hear that you’re still working, but sorry that you had to cut back on the plaqenil to make ends meet. I know it’s an expensive one. Just remember that the half life of plaquenil is over 3 months, so be prepared for a change in symptoms at that time. Glad you found the glucosamine and I hope that works for you. I’ve had hip pain before also so I can relate. Peace and good luck in all your endeavors!

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