What now?

I went to California this weekend for a family reunion.  I visited appropriately for the first 2 hours and fell asleep like a loser the last 2 hours.  I absolutely could not stay awake no matter how hard that I tried.  My husband just wanted me to be his fun, social wife but I failed.  I wish that I could feel good all of the time.  I work so hard to stay healthy and exercise just so that I can put on my smile and be a fun person to be around.  I do not want to be like some of my patients who are hyper-focused on their every ache and pain.  I want to be a positive person and just pretend that I am fine and that this is not happening.  Some days I win (yay me!).  Other days, I do not.

I have to take a pain reliever just so that I can run.  It really is ridiculous.  I had to cancel on my run buddies this morning because I felt horrible when the alarm sounded.  Of course, this set the mood for the entire rest of the day.  I eventually pulled myself to the gym at 2:00 pm but forgot to take an Aleve prior to running.  Yeah, that didn’t go well but at least I was only an embarrassment to myself.  I ran about 3 miles and had to stop.  I finished with weights so that I could at least get a 45-minute workout accomplished after eating that huge burger and fries for lunch.  I probably should try to eat healthier but you have to enjoy some things in life, right?

I do not know what all of this means but I do know that I have struggled a lot more than usual the last week or so.  People are noticing things that I was always able to hide before.  I’ll have to do better because I NEVER want to be seen as sick even if I am.  I work with sick people every day.  I teach them how to recover after suffering a stroke or heart attack, how to heal from surgery, how to overcome pain, and even how to exercise for the first time.  I should be able to fix myself too, right?

Systemic Scleroderma Fact of the Day:  Fatigue is very common in Scleroderma. Doing daily housework or putting in a full day at work is exhausting. By the end of the day, there is barely enough energy left over for spending time with family, enjoying hobbies and activities, or exercising.  Activities are more demanding because the body is less capable of using energy reserved for everyday activities because some of this energy is used in the body’s attempt to heal itself.  Fatigue is seen as a sign of laziness, a lack of motivation to get things done, or a sign of personal weakness. Sometimes people with Scleroderma feel bad about themselves because of their fatigue. They blame themselves for not being able to fight against their exhaustion. This just adds to the problem.

Happy Note:  I am not giving up.  I can still exercise and run.  I can still work a shift at the hospital on my feet all day.  My husband is not mad at me.  I was able to be present for my kids at Disneyland without having to go sleep in the car or something dumb.