I’ve had an extremely full Christmas season. It seems like yesterday I was looking at 2 weeks of vacation. Christmas was right around the corner and New Year’s was soon to follow with numerous family gatherings and friendly functions coming up. Now however, it suddenly seems the party is over and I am left extremely exhausted!
Today I realized, once again I am not the same person I used to be. That brings with it a well of different emotions. However, my mind can’t even seem to go there as the fatigue I feel is just too great. My tank is empty. I am out of gas; completely drained. I could not even bring myself to shower today as that seemed too great a chore. I’ve attempted to write this blog a half a dozen times already but the “fog” in my brain would not even allow me to formulate the proper sentences.
To add to the frustration of it all, one of my extended family members asked me this week how I can sleep so much. Here I thought I was doing well trying to be a part of every family function, trying to keep the pace even with my sister who has cancer. I had to gently remind my family member that I am sick. I may look fine and I think maybe even some of them think that now I am just somehow miraculously fine but truthfully nothing could be further from the truth. I am sick and I am tired. I am more tired than I have ever been or dreamed I possibly could be in the course of a lifetime.
I’m exhausted and yet sometimes I cannot sleep. Then, of course, at other times I am so exhausted I can barely get out of bed. I cannot breathe without the use of multiple inhalers. I am on medications that make me sick, cause weight gain, and add to my fatigue. I am edgy and nervous and my body always hurts. I cannot remember a moment in recent history where I am not in pain. Sometimes the pain is mild yet other times it can be quite severe. I do not always let on to others in these times how uncomfortable I am although sometimes, it is quite visible in the way I move. This is my reality every day.
So if I am at your house for the day and I need to take a nap, please try to understand I am not trying to be anti-social, I am not trying to be rude, I am not upset with you for this reason or that, and I am most certainly not trying to not be a part of the fun. I am merely exhausted. I am sick and this is the only way I can assure that to some degree I can still be a part of things and live some kind of normal existence yet in spite of my illness.
I know most people do not fully understand. I also know intentions are good and people are well meaning. But with Sarcoidosis, as with any invisible chronic illness, people just do not understand how ill you really are. How much pain you are constantly in. How incredibly exhausted you are ALL THE TIME even while you pretend to be fine and say that you are. It becomes draining to even try to explain it so eventually you just don’t. No one can fully grasp it anyway. All you can do is try your very best every day. Just put your best foot forward no matter how painful that may be. You just “suck it up” and keep living life long “after the party’s over.”