Building a Support Network for Fibromyalgia

helping-handsIf 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 what function or situation I need from that friend. I write down in my journal the following functions and next to each, I write a couple of friends’ names. I write down a few names next to each function to insure I always have someone to call if I need them, and I never exhaust my resources.

Nurse Betty: a friend to hold your hand while they take yet another sample of blood

Pal MD: a friend to call to discuss health care choices

Iron man: physical help needed, remember not to over exert yourself

Class Clown: a good chuckle cures all ails!

Let it all hang out: vent or whine about this and that, call when things are tough

Gossip Gal: a pal to chat with when you just need a friend

This side up: Flare-up = level 10+, I call this friend when my pain gets so bad I do not know how or what to make it better.

Smell the roses: You have become a hermit. Cobwebs have grown around your front door. Call this friend and get out and about.

Positive reinforcement: Life is great! You are wonderful! Call this friend and everything will be better!

Look at the friend support team like a grocery list. I tend to have about 3-5 people at a time on my support team. Each friend’s (and/or family’s) role can change over time. Some friends hold multiple roles; others drift in or out of your support team. And some of your friends might not be able to be part of your support system, which is also perfectly ok.

Think about building your support team when you are not overly tired or in pain. Make notes on what qualities your friends have that help you out the most. For example, my mother is the person I call to “Let it all hang out”. Because she also has Fibromyalgia, I can vent to her about ongoing medical bills and medication conflicts.

How to keep a strong support team:

Just has we become exhausted of dealing with our illness; our friends also become tired of hearing about it. Learn to rotate your support team. Do not vent to the same friend all the time! There is more to life than blood tests and trigger point injections.

Rotate who you call each pain flare-up. If you call the same person each pain flare-up, eventually, that person will become exhausted of the flare-ups just as much as you.

Look outside your own circle of friends for venting or medical advice. There are plenty of online help groups where many patients are going through the same medical issues. Like face-to-face discussion; reach out and find a support group in your area. The National Fibromyalgia Association is a great resource to locate a group.

Educate your support team. Fibro- My –Al- gee-a what? Help others understand what you are going through by giving them resources to read at their own pace. Some people do not want to know everything, others have so many questions it is arduous. Here are some websites that help family and friends understand more about FM:
www.fmaware.org
Mayo Clinic

Keep them close:

marilyn_phonesRemember, you will need someone from your support team the most when you can think the least. Keep your support team’s contact information handy; put their contact information on speed dial, create a Facebook group, paint their Twitter accounts on your ceiling, whatever you need to do to help you find them the easiest way possible.

Tips on how to get moving when you body says “NO”

Some days it just seems like the if the wind blows, I’ll hurt. I just want to stay in bed and shut out the world. Here’s the trick- DON”T! Keep that body moving! Do what ever it takes to stretch a little here or move a muscle there. Staying in bed can lead to your body tightening up too much and if you shut yourself out from the world, you can easily get depressed. Here are a few tricks on how to get just a few moments of exercise in on those really bad days:

– take a hot shower and do some simple stretches
– set a goal to get dressed and walk once around the block
or if it is a really bad day, go once around the house
– do 5-15 minutes of yoga after you get out of soaking in a hot bath
– practice controlled breathing exercises before you go to bed
( take slow big breathes in and let them out slowly,
concentrating on relaxing your body and mind)

Or, if all else fails, scream curse words at the top of your lungs! According to a journal by NeuroReport in their August 2009 issue, swearing will help reduce some levels of pain. I wonder if screaming will be accepted in my next yoga class?

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