Friday, April 22, 2011

Support

I am finally coming out of my slump. I am managing normal activity, but still slow at getting up in the morning, and my energy still flags early in the evening. I can attribute some of this recovery to trying to pace myself more. This is difficult for me, because I have only two settings -- On or Off. The other factor is that I have made some human contact outside of caring for my parents and spending my time with all their medical professionals.

Yesterday, I spent a nice morning with Carol Goldstein, the owner of Mackeral Sky Books & More. Carol provided some valuable critique on the stucture of this book. More importantly, she provided me with some pleasant companionship.

It is easy for me to isolate myself from people. The fibro can make me tired, achy, and grumpy to the point that I don't feel fit for society. I am also naturally introverted and generally happy doing solitary things. I was raised in a family with very defined restrictions on "airing dirty linen in public." You don't talk about your problems with strangers. My family's definition of a stranger is a medical professional or anyone not a member of the immediate family. Reaching out for support to a friend is just unacceptable. Although I don't personally believe that, it is so ingrained in my personality, that it is very difficult for me to ask for help.

Everyone needs some kind of support. Even if it is just a kind word when you are having a bad day. People with chronic pain or disabilities, can need even more support. Sometimes there are things they just cannot do themselves. That is when having a friend or family member that you can comfortably ask for help is invaluable.

Because Misha’s mother, sister, and neighbor also have fibromyalgia, she has always had their support. They often share treatments they have found successful with one another. Her in-laws have also been very understanding, and when they were able, often helped with the children when Misha was unable to get out of bed or leave the house.

For Andrew, his wife has been his foundation.With three children to raise, two girls and a boy, his wife bore the brunt of it.  “They didn’t really have a father. I couldn’t do the things that others do. I couldn’t play, I’d roughhouse with them for about 30 seconds and that was about it. My wife had to bear most of the responsibility for taking care of the kids, because I just couldn’t.”

Chris had no support from her first husband. He didn't even believe there was anything wrong with her. With her new husband, life has turned 180 degrees. “He’s wonderful, he’s very supportive. I was one of the fortunate ones when the family divorced and the kids blended. He is just 100%. In fact he will go to the doctor with me and he will go in and say ‘The first thing I’m going to tell you is that if you tell her that it is all in her head, this is going to end.’ He says, ‘I’m telling you it’s not.’ In fact the chiropractor that he took me to is his. He sat back and said ‘she’s been dealing with this headache for two years. It’s not all in her head’.’’

Heather relies on her girlfriend with lupus, "She understands what I go through and she offers good tips as well as acceptance of my syndrome."

Knowing you have someone to talk to, who will provide you with unconditional, non-judgmental support no matter how many times you've whined about the same thing, is extremely important for someone with chronic pain. We aren't always looking for answers. Sometimes we just need a friend.

No comments:

Post a Comment