One of the worst things about dealing with ulcerative colitis is the fatigue. People who don’t suffer fatigue have no idea how bad it can be. I describe it as bone-weary, deep exhaustion that never goes away. I sleep for 12 hours and I wake up yawning. During the week, I am not able to get as much sleep as I need. Given my choice I would sleep 12 hours each and ever night.
Fatigue really gets in the way of living your life. Some days I am awake in time for lunch. Getting things done is almost impossible. By the time I get going, commute to and from work, work all day, there is not much time left over for any kind of leisure activity. Really, all that is left is some time to eat and hopefully engage in some leisure and/or self-care.
Being sick means that there are all sorts of medical things I have to attend to. I have to go every week for a blood test. Although the lab has improved lately, that can still take anywhere from 20 minutes to over an hour. I visit my GP every other week. Those appointments can take anywhere from an hour to 2 ½ hours based on how backed up she is. Yearly (sometimes more) colonoscopies eat up at least 3 days. These procedures take 3 days of my life every time I have to do it. Then there are the follow-up visits with the specialist. Then there are the occasions where every thing goes south and I end up in the hospital for a couple of weeks.
What really causes the fatigue in ulcerative colitis is the fact that my immune system is activated all the time. It is the same thing that happens when the immune system mounts an attack on a virus or bacteria. The only problem is that my immune system is attacking my colon. The activated immune system then causes things like rashes (which I get on my face mostly), thrush, yeast infections, joint pain, sore muscles, and fever.