Any free time is often spent resting or staying in bed because of the pain, fatigue or other symptoms. There’s no time or energy to do anything else.
Some people with chronic illness continue to work full-time perhaps for financial reasons, I know that it’s my reason. That and the inaccessibility of long term medical leave.
The problem is that all those doctor visits, medications and treatments can really add up. I’m worried about missing days for doctor appointments. I get scared of catching colds (and everyone is coughing at work right now) because it takes me longer to recover than most people.
Working full time is incredibly stressful and both physically and mentally taxing. Just because I am at work doesn’t mean I actually feel well enough to work. Some days it’s hard to even move and I accomplish very little. I always feel so guilty for not making it through a work day or when I’m not very useful at work because it takes all the energy I have just to stay awake and fight off the pain. I wish people understood you can have daily pain and still function somewhat normally.
Most people with chronic illnesses have adapted to higher pain and discomfort levels than an average ‘healthy’ person. Sometimes we push our bodies harder because we have no other choice. What others perceive as disinterest or laziness or absentmindedness (and by others I mean management) is often survival techniques due to exhaustion and pain.
I am absolutely drained physically, mentally and emotionally after each and every day.
I question myself constantly about what I can and cannot do. I’m in such denial that I have a hard times coming to grips with not being healthy. I’m really mourning the energy I once had. I wish people knew my condition isn’t less awful than others with the same one just because I work while they don’t.
I constantly worry about taking vacation because I take so many sick days. So I never really get any time off. I also constantly worry about getting let go. I’m petrified of the day when my body says enough.