The Isolation of a Syndrome
As I look back at how fibromyalgia has most affected my life it’s most impact has been in isolating me in a sense. I used to be an avid walker, used to participate in different activities, events, socialize, and slowly that was taken away from me, even going to Temple, to Synagogue, or to Church.
I felt very much as home at Synagogue, but not feeling up to going up to 14th street and the long service and then luncheon, study after, long day and I am not feeling up to it. Recently I had to have my right foot bandaged up for a few weeks, was told minimum pressure on it, so even the stairs at the nearby church were not appealing and an option, a lot of ankle pain. I find that even now with the osteoarthritis and other stuff acting up it will have to be Legion of Mary meetings and 1 hour Mass at the nearby church. For an artist to be really have her work known, even a life coach, live events, but that is a catch 22 situation for me. Since the Fibromyalgia is so unpredictable, if I plan and promote too far ahead and charge for tickets then crash and can’t do the event, then what? If I don’t do live events, well then nothing moves to the next level, so catch 22. I have to figure out a calculated risk situation where I can organize an event and not end up with “egg on my face” as they say or in any legal jeopardy. Syndromes take much away from you, they take away your friendships because sooner or later people get tired of your unpredictability and the inability to make plans, your canceling out at the last minute etc…and your mobility in some way, so you end up isolated in some way. You have to really fight through the inclination to go into any kind of depression because it is easy to do so under such circumstances. However, it’s important that you do. If you can’t go to the prayer service you used to go to, find something closer to home and for goodness sakes don’t be so in law and dogmatic about the place you to go pray, just as long as it is looking to Christ as Lord and Messiah, Son of God, or a different synagogue. Go to a nearby cafe a few times a week that maybe has poetry readings, find some way to connect, to be with people, to be inspired. Sit in the park near your home even if for just an hour each day, talk to someone. Don’t ever let a syndrome, a loss, sadness totally isolate you because it is very easy to let that happen, to go into depression and isolation. I have to fight that regularly that tendency when I get really tired of swimming through the fibro. Swim I will!