Sunday, May 24, 2009

Making Long-Term Plans is Hard on My Nerves

Since March of last year, I have probably been to a handful of movies at the movie theater. Going to the movies was a regular pass time. It has just become too difficult to get myself ready, drive, and sit in the theater seats for that long. If I have to stand in line, my family will let me go sit down and hold my spot for me. I have had to change my life completely to work around my good days and bad days. I am unsure until I wake up and get going whether it is going to be a good one or bad one. I tell myself that each day I wake up it is going to be a good one, but my body says has other plans. I have learned to strongly dislike making appointments or plans. Even doctor appointments are difficult to go to. I have actually cancelled some doctor appointments the day of because I cannot walk well enough to get to them or my rash and joints are so flared up that it is almost impossible to move and I don't like being seen with the rash on my face. I also have found that I get stressed out making plans with friends in advance or any type of occasion in advance. It all stresses me out and I don't know why, but I am working on it.
I am really excited that I get to travel to go see my oldest daughter in Nashville the first week of June. However, I am nervous about everything; how will I feel, can I walk all that I need to, I need to buy special clothing, big floppy hat, SPF100 (just came out), and just being away from what has become my safety zone. It is comfortable here and once I am out of my safety zone I am no longer in control.
I am so nervous because I am afraid that if I get too stressed or nervous about it that it could cause me to go into a flare. I am going to do everything that I can to keep myself at a place physically and mentally that I can make this trip. This was a planned trip; an impromptu type of trip puts me into a panic.
My lovely brother called me the other day asking if my husband and I would like to go on a cruise with him to the Western Caribbean. My first response was NO...not just NO, but _ _ _ _ NO. I then thought that I wouldn't want to miss the opportunity to be with him and some vacation time with my husband. I then put every rational thought aside and said yes. We then called our best friends to go and from there we are starting the planning.
Inside I am so excited, but deep down I am scared to death. I have so many what ifs. I have so many things that I need to plan for; medicines, doctor appointments, etc. It is overwhelming to think about. My first concern is the sun. I am very photosensitive and need to take extra precautions on top of my own photosensitivity quite a few of my medications cause extreme sensitivity to the sun exposure. We aren't going until September, but I find that my mind is already preoccupied with so many things, so many thoughts of what if I get a double kidney infection, inflammation in my lungs, inflammation...inflammation...inflammation. I know I need to just STOP myself from these negative and worrisome thoughts and know that there are plenty of people that are much sicker than I and if they can do it - than so can I.
I guess the main thing that I wanted to share today is how much anxiety we go through for something that we used to do without a thought. Long gone are the days of just jumping in the car and going for a ride. I am tired of telling friends no, family no, and just staying home. I am way too young to live a life as a prisoner in my house and continue to look for alternatives such as proper clothing, protection, muscle toning as I am able, and find joy where I can and enjoy the energy as I get spurts of it. I think the lack of spontaneity has been one of the hardest issues that I am dealing with as a result of the Lupus and other illnesses. My family is supportive and I again am so thankful. I hope to be able to make these trips and somehow try to get over my phobia of long-term event planning and enjoy my life as much as I can.

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