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Building a support network
Wed, 09/30/2009 - 2:08am
Hi Everyone!! I'm Amy- I just wanted to share with you something I do to help manage my fibro.....
If you are dealing with a long-term illness, you have seen MANY doctors over the years. After a while, that number narrows down to become a focused team of health care professionals. Your team might consist of the following; a general physician, a pain management specialist, a neurologist, an endocrinologist, an acupuncturist, a massage therapist, a physiologist, a physical therapist, and the list of “specialists ” could go on and on. Each of us builds our medical support team differently based upon our needs.
Using this same model of a support system, I have a team of friends to help me out. A support team of friends can help you through your toughest challenges. Just like with a medical support team, everyone’s support team is different, they can help you when you do not know how to help yourself. However, a friend support team's roles are never set in stone. Friends can help you with a bit of laughter, when you need someone to hold your hand during medical procedures, when you need encouragement, when you need a shoulder to cry on, when you need someone to bounce ideas off-of, or just when you want companionship during a “flare-up”. An organized support team becomes an essential tool to help you stay positive, healthy, and on top of your pain.
Developing and managing a strong support system is not an easy task. There are many issues that come up which make it difficult for your friends, and even your family members to be part of your support system. There is a huge challenge of keeping everyone informed about your ever-changing health condition. This challenge is well worth it though, because the friend support system comes in handy when you need it the most!
Honesty between you and your supporters is a priority. You need to be able to tell your friends what you need from them. And in turn, they need to be able to say what they can and cannot do for you. The best advice I was ever given was never be afraid to say, “No, you can’t do something”, especially to a friend. Make a pact with your supporters that they will never agree to do something unless they really want to so it for you. They should never feel burdened by you, and you the same by them. That way when you call asking for help, you know they are truly helping you because they want to, not out of pity. It seems strange to ask this of you dearest friends. But, by making this pact, it seems to help rebuild your self-esteem, especially after that sixth late night “help” call.
There are a number of ways to establish your own support team. I name mine based on.......You can see the entire posting of this article at: http://wp.me/pAkcd-5V
Please fill free to email me or read more of my blog at: flourishwithfibro.wordpress.com
Thanks! Amy
Twitter: fibroflr
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e-mailThis forum is provided to allow members of Lumigrate to share information and ideas. Any recommendations made by forum members regarding medical treatments, medications, or procedures are not endorsed by Lumigrate or practitioners who serve as Lumigrate's medical experts.
Hi Amy,
I think you have a great way to handle the emotional and physical ups and downs of fibro! I love the thought of formally setting up your system of support.
One thing I would add is finding a support group for chronic pain. I looked in my area and couldn't find any. Since I'm a social worker, and dealing with fibro, I decided that was my hint. So I started a group here in my town.
It took a while to get off the ground. I posted flyers all over town, much to my health's dismay. And I posted it online, with any site I could.
Finally, people started coming. It was so fantastic and helped me more than any med ever has! I now have a core group of 6 and occasional attendees up to 16 in my first group. My therapist then mentioned how many fibro patients she sees and how they need a support group too.
There I went again! I started a second group south of town. It took off much faster, having a source to refer to me! That group has a core group of 5 and another 10 or so that attend on occasion.
The relief of being in a room with people who truly get it, people who understand what you are dealing with like no other person can, it's amazing. I get such an andreneline rush from it!
It's a lot of work, but so worth it for me. We meet once a month, which seems to work best. And I know everyone who attends the meetings is grateful for the support. I've also tried to make the groups educational, I've had a compounding pharmacist come to talk about bio-identical hormones and how they can help fibro and next week a massage therapist is coming to talk about how massage can help and she's going to give free shoulder massages!!
I truly believe that the more support a person can gather, when managing a chronic illness, the better we will manage. I love Amy's ideas and just wanted to add on my own!
Aimee
~~Aimee
Aimee Shannon is a licensed social worker who has fibromyalgia along with a collection of other illnesses. Aimee is passionate that those dealing with chronic illnesses need education and support to best manage their illnesses. Along with writing for Lumigrate, Aimee can be found leading a support group on Facebook, as well as two in person support groups in the Dayton Ohio region. http://www.facebook.com/pages/Fibromyalgia-Support-Groups-by-Aimee/94975642116Thanks Aimee!
Congrats to you on building a support group! I truely admire the strength you have to help yourself and others.
I also really like the idea of bring people in to help teach. Chronic pain is such a complicated issue, no two people are alike. I think the more people we can tell our stories to in the medical and health care field, the better our choices for care will be in the future.
Thanks for the ideas!
Amy
Stay happy and healthy!
Amy
flourishwithfibro.wordpress.com
Twitter: fibroflr
Hi Amy~
You are so very right about having that network~ of medical help and support of friends/family as well. Its so important for anyone that has a lifelong illness to have this implemented in their life. I have just a couple of things I would like to add to your thoughts~ for the people who may be going into this stage of their journey.
I did find along the way some folks could not handle my illness, it made my life change, and i was not the same person ''to them'' as I had been before~ the pain and other symptoms of the illness now caused me to have to say 'No, I'm sorry I can not go skiing' or 'dancing' ..etc... They understood, but some folks can not deal with long-term illness' , others feel guilty because I could not go have fun, so the friendships wavered~ and eventually drifted away.
At first this hurt me deeply~ I missed them dearly~ but as the years passed for me and I came to terms with my life as it is now~ I understand, and its OK that they drifted away.
You see the friends that did not drift away~ those that kept in touch~ even the ones you couldn't push away when you were feeling like you wanted no one around you~ that's your support!! Those are the friends that will be there through thick and thin~ they will make you cry simply from laughing too hard, AT YOURSELF! They will cry over your bad day~ and together you can share your world(s).
That friend ~ they have problems too, of some kind~ no one is perfect~ and they may need you as much~ if not more then you need them. Their pain may not be psychical, but they will have their days they need you to make them cry from laughing at themselves!!
I found I have more strength when i can be there for someone else~ when I can help my friend~ when i can be a support team for another~ it in turn supports me.
I just wanted to let everyone else that might be going though this stage in their life know this~ it takes time to find your support groups...both medical and social.
Don't be afraid to say "No, I'm sorry but I'm unable to go...'' ~ don't get into the mind set that you will lose everyone if you have to say 'No' that you can not do something due to your health~ that only adds stress to your self~ which makes everything worse! Those support friends, they are going to understand~ and they will still be there for you.
I found that if I said 'but please keep asking me and trust that I'll know what I can and cannot do', or if there was something I wasn't sure about how I would do, I'd frame it as such. "I want to drive separately in case I need to leave early" or last year when I got back to skiing again, I said 'I want to ski that first day, if I can, just with you' so that I didn't have more novice skiers with us which actually make it HARDER than if you're skiing with someone your own level. (Plus after 12 years and all that I'd been through, I just wanted to have FUN if it went well.)(which it did).
I think there's quite a lot that people with fibromyalgia and chronic pain could learn from how to talk about their medical facts, needs, feelings, and how to do better with making and maintaining friendships. It certainly is a challenge. Ironically, one of my best friends now is a woman who also had fibro but we didn't know that at the time she really sought out a friendship with me. She wasn't my normal type of friend, but 10 years later, I am SO very glad she knew how to persist in asking me to go do things (which was at my LOWEST point ever with my health). I actually was so bored that I went, and it turns out she's just one of the greatest friends I've had. A keeper for life, and I have a few of those to add her to in the bouquet of friends that I'm happy to say I have.
Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
I found that if I said 'but please keep asking me and trust that I'll know what I can and cannot do', or if there was something I wasn't sure about how I would do, I'd frame it as such. "I want to drive separately in case I need to leave early" or last year when I got back to skiing again, I said 'I want to ski that first day, if I can, just with you' so that I didn't have more novice skiers with us which actually make it HARDER than if you're skiing with someone your own level. (Plus after 12 years and all that I'd been through, I just wanted to have FUN if it went well.)(which it did).
I think there's quite a lot that people with fibromyalgia and chronic pain could learn from how to talk about their medical facts, needs, feelings, and how to do better with making and maintaining friendships. It certainly is a challenge. Ironically, one of my best friends now is a woman who also had fibro but we didn't know that at the time she really sought out a friendship with me. She wasn't my normal type of friend, but 10 years later, I am SO very glad she knew how to persist in asking me to go do things (which was at my LOWEST point ever with my health). I actually was so bored that I went, and it turns out she's just one of the greatest friends I've had. A keeper for life, and I have a few of those to add her to in the bouquet of friends that I'm happy to say I have.
Mardy
Live and Learn. Learn and Live Better! is my motto. I'm Mardy Ross, and I founded Lumigrate in 2008 after a career as an occupational therapist with a background in health education and environmental research program administration. Today I function as the desk clerk for short questions people have, as well as 'concierge' services offered for those who want a thorough exploration of their health history and direction to resources likely to progress their health according to their goals. Contact Us comes to me, so please do if you have questions or comments. Lumigrate is "Lighting the Path to Health and Well-Being" for increasing numbers of people. Follow us on social networking sites such as: Twitter: http://twitter.com/lumigrate and Facebook. (There is my personal page and several Lumigrate pages. For those interested in "groovy" local education and networking for those uniquely talented LumiGRATE experts located in my own back yard, "LumiGRATE Groove of the Grand Valley" is a Facebook page to join. (Many who have joined are beyond our area but like to see the Groovy information! We not only have FUN, we are learning about other providers we can be referring patients to and 'wearing a groove' to each other's doors -- or websites/home offices!) By covering some of the things we do, including case examples, it reinforces the concepts at Lumigrate.com as well as making YOU feel that you're part of a community. Which you ARE at Lumigrate!
Hi~ I wanted to add a couple thoughts mainly to this thought that Mardy shared above with us all~
''I think there's quite a lot that people with fibromyalgia and chronic pain could learn from how to talk about their medical facts, needs, feelings, and how to do better with making and maintaining friendships. ''
I agree 100%~ but~ ahhhh here's the , BUT.... when I first found myself with fibro~ I was a single SELF SUFFICIENT woman (as i had promised myself I would be). I was not a weakling, I worked hard, many hours, enjoyed life to the fullest, loved and was loved by family and friends... I , I , I~ yep its all how I viewed myself at that point in my life. Everything positive!
THEN THE FIBRO CAME TO BE APART OF ME~
I could not work anymore~ how was i going to admit to everyone that I could not earn a living to support myself??? How could I TELL everyone I was SICK???? I was supposed to be strong and able! If i start talking about my 'aches and pains' everyone will turn away from me!!! Yep~ it was a different song and dance but it was still all about "Me, myself, and I''
I was so worried over myself being all those negative things now (in my minds eye) that I never stopped to think how my friends felt over my sudden withdrawal from the world and life. They could not figure out what happened to me.
Unfortunately for me~ learning to ask for help from family and friends~ reaching out to others and telling them about fibro and how it affected myself/life~ these were some of the hardest lessons for me to learn~ instead of being the giver, i was now the one needing~ I cried for weeks and months over this very thought alone.
Fibro made me humble.
and I can now say I'm grateful for that fact.
Its hard to speak of personal weakness~ and I had to learn that fibro was not a weakness~ it simply was a illness. Once I learned to deal with the facts more than the emotions of having fibro~ i was able to open up to others about fibro~ now its just a part of me, I think nothing of it, not negative nor positive it just is. So I am able to speak about it, and share what I have learned along the way thus far.
I hope everyone that is on a similar journey will be able to be comfortable and speak about their medical needs, illness and feelings with their loved ones and friends~ being able to talk about it~ helps so much!