This winter/spring my health got worse, and I developed a lot of new symptoms. I took what was intended to be a 3-week leave of absence from work at the end of March in order to rest and get my health back on track. However, my health kept getting worse and I kept having to extend my leave of absence. At the end of May I officially quit my job because of my health problems. I don't have an official diagnosis yet, but a lot of potential problems have been eliminated, and I know that at least one of my problems is related to my lungs.
Sometimes a friend will find out that I'm not working, or that I was only working part time, and they'll ask, "What do you do with all your free time?" Or "If you only work in the afternoon, then what do you do in the morning?" When you're healthy, these may seem like very reasonable questions. If I'm not working full-time, I must have plenty of time to do whatever I want, right?
These questions annoy me, but I try to be patient with people because I know that most of the time they mean well and are genuinely curious about what I do all day. Normally these people care about me but are just clueless about the nature of chronic illness. I was healthy for most of my life, so I know it's hard to understand chronic illness unless you've either experienced it yourself or been very close to someone who has.
One thing that takes up a lot of my time is all the medical tests and procedures I have done. These are most of the tests I've had done in the last several months.
⦁ Hida scan (Nuclear medicine imaging of my gall bladder)
⦁ Ultrasound (2)
⦁ Upper endoscopy
⦁ Colonoscopy
⦁ CT scan (2)
⦁ Bloodwork (I lose track, but several times)
⦁ EKG (5)
⦁ Urinalysis (3)
⦁ Chest X-rays (2)
⦁ Tilt-table test
⦁ Echocardiogram
⦁ Pulmonary function test
⦁ MRI
Add to this the appointments with my primary care doctor, various specialists, ER trips, and traveling out of town for doctors' appointments.
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| View of Richmond from VCU Hospital |
I also need to sleep a lot to be able to even semi-function. This means sleeping 10-11 hours at night, plus taking a nap in the afternoon. I also have to take time to lie down even when I'm not officially napping because I get out of breath from walking around and getting ready for the day, and I have trouble breathing if I sit up for too long.
Another thing that takes up time is making doctors' appointments, calling up nurses to ask questions, and messaging my doctors on MyChart. Since I'm seeing a pulmonologist now, every morning and evening I use a peak flow meter (measures breathing) and inhaler, and it took me a few days to figure those out.
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| Inhaler and peak flow meter |
I also spend time looking up information on my various medical conditions. Sometimes people say, "Don't Google medical stuff; you'll scare yourself!" There is some truth to this, and sometimes I do spend too much time Googling possible diagnoses. But some amount of internet searching is necessary, especially when I have rare illnesses that my doctors aren't familiar with.
I think that some people who ask what I do with my free time may just want to know what I do for fun. So a better way to word the question might be something like, "What are your hobbies/interests?" or "What do you do to keep from going crazy?" There are a lot of my old hobbies that I'm either unable to do now or am very limited with, like hiking, biking and traveling. I still like being outside, and this spring I started photographing whatever animals happen to be in my yard, which is typically frogs and birds. I like playing with my puppy, Maple, journaling, and watching nature and travel documentaries. And occasionally, when I am feeling good enough, I write blog posts like this!
