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some suggestions for living life to its fullest with IC

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  • dawnlizbeth
    replied
    Oh, another thing..I wanted to add a small suggestion of my own that has really helped me out. Since I got sick I have had a lot of problems with pain & exhaustion. I found that things in my home & life began to pile up around me in a horrible mess. I am a bit of a perfectionist & I kept thinking oh, I won't be able to finish this because blah, blah, blah so I would think well, I'll do it later. Later never came. Anyways. I found a website www.flylady.net
    that is sort of organizationally minded. I know this sounds weird but its a website for cleaning your house & getting your life together along the way. Flylady won me over (free site mind you) because one of the first thing she harped on was "you can do anything for fifteen minutes". Somehow that made me realize that even if I have to take a nap, or go to the bathroom or whatever I can stop whatever I am doing & go back to it later. Her site has a lot of practical advice that applies itself well to those of us who have medical problems. (or our friends who don't for that matter) Born Organized people probably won't get anything from that site though lmao
    -Dawn

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  • dawnlizbeth
    replied
    Thanks Anmi!
    That was a very inspiring post! I recently retired for medical reasons & I am hopefully going back to school soon, intending to finish a degree in something I can do from home. Thanks for suggestion number 4. I keep saying I am going to do some volunteer work but not "finding" time to do so. Thats a godbreeze Reminding me again wink
    -Dawn

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  • PeitiW
    replied
    Anmi:

    Thanks so much for sharing with us your briliant ideas. I especially enjoyed the last part. I found sometimes I was so obsessed with my own problems and forgot there were more people out there suffering from more terrible illness.
    You are a very intelligent girl.

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  • mayray518
    replied
    Anmi, you sound like a very intelligent together young woman. Your ideas were very helpful. it is no nice to get positive feedback regarding his awful disease. thank

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  • anmi
    started a topic some suggestions for living life to its fullest with IC

    some suggestions for living life to its fullest with IC

    Here are some suggestions for how to have a life even if you are disabled because of IC. (I orginally posted this as a response but I thought it might help for more people to see it).
    It is so easy to feel imprisoned, especially since you never know from one day to the next how you are going to feel which makes school/work awful difficult. I thought I would never have a life again. It's also extremely difficult when u are young (im 22)to have to feel like u are watching life pass by, but i have found a few ways to feel like i am still involved but from the convenience of my home. You just have to employ some creative thinking.

    1. School - i had to leave school because of IC, i tried to finish my last semester of college, but one professor refused to compromise on attendance so i ended up one class short of a degree. but, no problem. there are many many many long distance learning classes you can take and you can even earn a degree from home from some schools(i.e. university of pheonix). plus, a lot of the long distnace programs are actually hundreds of dollars less expensive than actually attending school. a good example of this is Indiana University (where i attended). a three credit hour class on campus is about $1200 for out of state and $700 for in state, but a long distance learning class is only $300-$400. some schools that have great long distnace programs are Indiana University (they're like #1 for long distance classes) and University of Georgia. But there are plenty of others, just do a search on yahoo, there are hundreds.

    2. Working from Home - IC actually became a blessing in some ways for me because I started my own company so that I wouldn't go insane at home. Even though I have no design or artistic experience (I was an English major in school) I know design, refinish, and paint furniture (thank you daytime home improvement shows - it's really quite easy and a lot of fun)and i taught myself to sew (also surprisingly easy) and make quilts and pillows and so forth. then about once a month, or whenever i can, i take my stuff to the local flea market (boyfriend in tow so i can take as many bathroom breaks as i need). the lesson here is just to find something that you're good at and figure out a way to make a product or a service from your house. One of the simplest things I do within my business that anyone could do is go to the garage sales on the weekends, and then sell the things u buy at about a two hundred percent mark up at a flea market, on ebay, or on your own website.

    3. the INTERNET - access to the internet is incredibly helpful when it comes to making a life from home. As I mentioned before Ebay can be a marketplace, you can have your own webiste for your business etc. Plus the internet offers yet another option for a business at home. Many of the long distance courses one can take are based on technology. It's really quite easy to learn website design and programming, which is something one can do for a living from home.

    4. Volunteering - this is something that has really helped me feel more involved in life. when you volunteer, you can control your schedule completely. let them know your circumstance ahead of time, and you can always adjust your schedule to fit in with your health. it gets you outside and into life and helping people (i don't know about the rest of you but IC has made me a much more compassionate person). it is not quite as embarassing to tell a volunteer coordinator about an illness than it is a boss because community organizations are not only just ecstatic that you are there but let's be perfectly honest - they're used to stories like ours and they're ususally very compassionate people themselves. volunteering is also very inspiring, and you will meet a lot of people who have worse stories than yourself and are overcoming even larger obstacles and you will truly be inspired.

    anyway, i hope this helps. don't ever let IC imprison you, there is always a way to walk around a mountain if you can't climb over it.

    love and good luck,
    anmi grouphug
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