Sunday, April 19, 2009

The Importance of a Support System

I've been diagnosed with fibromyalgia/CFS for 8 long years now, but I've suffered for much longer. I can remember being a pre-teen and hurting so much it would make me cry. Especially in the winter and on rainy days. I would literally sit beside the gas heater in the winter until my clothes would scorch because heat was the only thing that would help the pain. I remember taking 4 aspirin, 325 mg a piece , at a time, several times a day when the pain would hit me.
All that time I never knew what was wrong with me. We brushed it aside as minor arthritis. We were too poor to go to the doctor back then. Dr's were for emergencies only.
At that time in my life, I didn't know I would need a support system in my life, or even what a support system was. I have come to depend on them heavily in the last 8 years though. In fact, I couldn't survive without it.
MY support system comes in many different forms and many different people. I hate to say it, but not much of mine is in the form of family. My family does not understand my illness. They are not critical of it, they simply can't understand how I can be so sick, but look so healthy. I always catch flack from them if I miss a family gathering or if I have to leave early from one. No, my support systems is mainly built from friends and believe it or not doctors. My immediate family, husband and daughter, are very supportive however my daughter is only 5 so there's not much she can do to help. She occasionally brings me stuffed animals of hers, to make me "feel better soon". That is priceless and it does make my spirits feel better.
I rely on several doctors, who have become good friends, to help me though my struggling times. Sometimes with medications, but a lot of time just with encouragement. The assurance that it's NOT all in my head. One such doctor is my psychologist. I suffer from extreme depression as a result of my fibromyalgia and how it's changed my life. This doctor is a Christian and also suffers from fibromyalgia, so she really does understand what I'm going through at times. Other doctors are my internist, psychiatrist and pain mgmt specialist.
But my main source of support is from friends. Both near and far away. Some have fibromyalgia themselves and understand what I go through. Others are just sweet caring people who see me in need and try to help. Without these friends I probably wouldn't be here today. I would have given up my fight long ago. Special friends like Trisha and Vickie, who co-author this blog, have immeasurable value to me. They pick me up when I'm down. Have sympathy and empathy when I am going through a tough spot. But most of all, they can relate. That's very important! You need someone who understands what you're going through. This can come from friends, from organized support groups or even, as in my case, from places like FaceBook. That is where I found Trisha and Vickie. And I thank God every day for them.
Without a support system, it often feels like it's you against the whole world. You need to know that there are others suffering just like you. You learn so much from them. I'd had some crazy symptoms for years but after speaking with some of my support system, found out that they were related to the fibromyalgia as well. For years I suffered with depression all alone....I was ashamed to admit I had it. But my support systems taught me that depression is a natural human emotional state when dealing with something as life altering as fibromyalgia. I have often heard it said that fibromyalgia will not kill will just make you wish you were dead!!! I don't exactly know how true that is for people who don't deal with depression along with their fibro, but for me the statement is true. And if it were not for my support systems cheering me on, I probably wouldn't be here today.
Please, don't suffer alone with this illness, or any illness. Build you a support group/system and let them help you through this. Sometimes it may be that you just need someone to talk and listen to you. Other times, you may need help with housework or errands., trips to the doctor, etc... Don't be ashamed to ask for help from those who have offered it. They wouldn't have offered if they hadn't meant it. Take advantage of those offers to "get out of the house" or go to lunch. It is imperative that we have human contact on a regular basis. Too often we sit in our little rooms and suffer all alone, when there's caring people out there just begging to help you. I realize that you have to pick your friends carefully as some may be like Job's friends in the Bible.........just critical of you. But I feel strongly that God has a support systems out there for you if you'll just look and let people in. I am 40 years old and just this year have I really started building my support systems. Before I just shut everyone else out. Don't go through this alone. You don't have to. You don't need to. Open the rusty lock on your heart and life and let people in. It's the only way to really survive. May God bless you my friend.


stipeygirl75 said...

Teresa, I know just what you mean. Support systems are so important for getting info. and realizing you are NOT crazy! Once you start reaching out you realize you are not alone and you do have things to be very thankful for. Family does not understand sometimes - they want the "old you" to be there, and when it's not they get upset. Understandable but it's not something we can help! Doctors are awesome if you find the ones who are caring and understanding. The best ones are the ones who can admit they don't know everything - they see you as a "learning experience" :) I had one ostepath like that, and now 2 massage therapists. My family doc doesn't know a thing about what I am experiencing but he does refer me to specialists I need to see, and gives me the meds I ask for. He knows I'm a responsible person and I wouldn't ask for things I don't need. I do a lot of research so I can find things to help myself "on my own." It is easy to get sucked into depression and feeling sorry for yourself, but I have found that this is counterproductive. I feel 10x worse when I have this attitude! My support systems help me have a more positive attitude about myself and what I am dealing with.

Trisha Pearson said...

You are so right, Teresa. Support systems do make a world of difference. I often find that it is my online friends that give me the biggest boost, both those with fibro and without. I was lucky enough to have a supportive husband, mom and friend but having people who really understand what the fibro is like takes support to a whole new level. Before I discovered facebook and my fibro friends, I spent weeks or even months in the late winter feeling isolated and alone. This year, I had a few days here and there where I felt that way but contact with my online support group always lifted me out of it quickly. Like that old phone commercial, we just need to reach out and touch someone!