How do you live a normal life with such debilitating conditions?
For me I really struggle with finding ways to find ways to do normal things, since I am so ill and in the hospital almost as much as I am out. I just cannot do things like go out, and not have repercussions. I simply cannot cognitively work, or do something day after day at the same level. I'm fortunate if I get a few hours a week of a good level of function. I cannot simply apply to a college, and go. I know this, we (medical support, family, friends) all know this.
But that doesn't mean I can't do anything; I just need to figure out what I can do, when, and how. One thing I have asked doctor's, not that they have the answer, is "what should I expect of myself? What is reasonable?"
I wish I could say I am surprised to discover, when I push myself, I can do vastly more than I thought I could. Especially that, plus not have serious consequences. Crashes, not having enough energy, feeling as though I'm in a crisis mode, not being able to function...this can happen without me exhausting myself from a big day. That's what is hard about such diseases.
Now that I've talked about the more gloomy side, what can I do about this?
I believe there are always ways around any situation. and I CAN still push myself to a point, and find ways to move forward in my world. I have dreams and hopes just like anybody else. The same as somebody without a chronic disease or disability. I want to take online classes, and graduate from college. I want to make a difference in this world. But if I never make the normal "steps" that this world expects young adults like me to take, I want to fulfill the purpose God has for me. We all have a purpose! And THAT is my main goal in this life. I don't want to miss a single thing He has for me!
What do YOU want to accomplish?
What are YOUR goals?
It's important to make a list - make deadlines and plans.
And don't ever let anybody tell you you can't.
Adapt, overcome. You're not alone! We have a great community and a great God.