As everyone else said, it does suck, but how it feels to live with chronic illness varies as much as people vary. People react to their new limitations, lifestyle, and the overall new “suckiness” of their life differently, based on personality, previous experiences, support network, mental health, and a million other variables.
I, for example, handle it really well. I’m 100% disabled. My autonomic nervous system doesn’t work properly which causes heart rate and blood pressure abnormalities, frequent fainting, inability to stay on my feet for more than a few minutes at a time, body temperature variations, inability to digest food normally, and a ton of other whacky symptoms. I also have fibromyalgia and migraines that can last for days on end.
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Small, everyday activities that most people take for granted I have to plan in advance – things like getting dressed, taking a shower, or making food take planning, setting up workarounds, and recovery time.
Over time I have outfitted my apartment to be more convenient for me…placed furniture in such places so that no matter where I am I have something to grab on to, make sure there is always a seat within reach, put down extra rugs for padding if/when I fall, outfitted my shower and bathroom with seats and handles, etc.
I live alone, so these precautions are necessary. I am always thinking ahead about what I might need or what problems might come up. Right now I only need a wheelchair part-time, but what if I become constrained to it full time, how will I need to change my living arrangements? Am I prepared for that? How hard will it be? Should I start some early preparations now, just in case? I want to make a certain meal for dinner.
Can I stand long enough to prepare it? Is there any way I can split up the preparation to make it easier? Can I do part of the prep the day before and freeze it so I don’t have to do it all at once? Stuff like that.
Notice my answer focuses on action more than on feeling. That’s because that’s how I am. I’m not an emotional person. I don’t get caught up in the touchy-feely stuff and I don’t get upset that I’m sick. Shit happens.
There’s nothing I can do about it so I don’t see the point in being upset about it. I want a doctor that will fix me, not one that will give me sympathy or tell me it’s going to be okay. As I said, everyone reacts differently.
Many people with chronic illness, on top of all the things I’ve listed, struggle with anxiety and depression because it is hard to keep dealing with all these stupid days today struggles when you’re looking down the road of the rest of your life, years, and years down the line, and realizing it’s not going to get any better, it’s not going to change, that this is it, this is your life now.
Depression and/or anxiety can make getting out of bed hard for someone without additional health problems, let alone in someone who is disabled for other reasons as well. For me, at least, I’m not sad about it, I’m just busy. I used to be busy working. Now I’m busy being sick – constantly.
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