Oh where oh where…


Oh where oh where is the old me? I used to be so proactive, jump up and helping out whenever I could. I loved being around people and giving. I thoroughly enjoyed going out and having dinner with friends, having my family for dinner, organizing a myriad of different things and having my finger in several different pies at once. I was a go getter, an A type personality. You know the type, I was always on the go, never slowing down for long and always in motion.

Lupus has changed that for me. I think the hardest part of this disease has been the learning how to slow down and appreciate the small things. I heard this once on a show of mine, the fellow said he was learning to do very little, slowly. That is how I feel. I was always going and never stopped except to sleep. Now I take time to figuratively smell the roses and appreciate the beauty that surrounds me each and every day.

I still mourn the loss of the old me. The hardest thing I ever have had to do is give up life the way I used to live it. I could do anything without thinking. Now, I have to hope I have the energy to do the thing that I plan. For instance, I wanted to go see a concert by Celtic Women. I bought the tickets for me and my daughter to go. In the end, my daughter had to get a friend of hers to go with her because I was unable to go. Why? Lupus had flared up and I was on chemo and a myriad of other drugs which made it virtually impossible to go out of the house, let alone drive 40 miles and attend a concert.

The frustration that accompanies lupus is felt daily. I make plans, but I also let others know that I may be unable to keep them. It is my disclaimer, you know, the one that says, “circumstances beyond my control may not allow me to participate”. It is frustrating for family and friends too because they never know what I will or will not be able to do. I still make plans though, so that I do not allow the wolf to control me.

Depression is another facet of this disease. Wouldn’t you be depressed if you daily had to explain your disease to those who should know better? You know, like your family? I mean, they see me struggle daily and yet every so often someone will say something that is crushing to my morale. Something like, “You can’t be that sick”. Oh yeah? Some days I think it would be nice to have a disfigurement of some kind so people could SEE the affliction. Then I may get some empathy.

I know people are well meaning when they say cruel and heartless things to us. They think they are helping. Indeed they are not. They can contribute to a decline in our health by pushing us along further in our depression. I mean, if no one believes you are THAT sick, then I say stay away from them for a bit. It is important for us who have this disease to be validated in our feelings and pain. Physical as well as emotional. If a person cannot support your emotional well being then stay away from them until you are stronger and able to deal with them better. That is what I do. It is my coping mechanism for those who speak first and think later.

It is hard to explain our problems on a good day, but when we are in a flare it can be exhausting. Emotional fatigue can play a big part in our physical fatigue. It is alla vicious circle. Anyway, I just felt the need to express myself a little about this because I was thinking about the life changes I have made in the last 10 years and how it has impacted me. I have had good things occur due to the slowing down and taking time to reflect on the life I have and how best to use it. Ihave had bad things because of others and their ignorance. However, I plug along each day and hope that this will be the day when I feel good and can be happier.

It is what keeps me going on some days. My faith, my family, my friends and the ability to share my pain and problems in this forum. Some days it is a lifesaver! May you be able to find your way to cope and I hope all have a pain free day if not today, then soon!