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What do you find the best way to comunicate severity of CFS, FMS & CMS to Doc's & loved ones ?
Chonic; Fatige, Fybromyalga, & Mono.
Offten these are conditions misunderstood or discarded . How do you think we could go about geting the whole picture understood? 1st to the Medical feild & 2nd to loved ones?
My family and I communicate a lot through emails and such. A few mo.'s ago I joined several support sites for these conditions. I subscribed to Dom's page on yahoo and she sends updates from the medical field too. So when I get these updates from her I usually forward them to my family. It took about 3 emails before I was questioned from my family about "do you have this?". And eventually found out that a couple of my siblings suffer the same symptoms. Write about your experience with this, and then invite your family to read your hub pages. Communication is the key. And as far as your physician goes, gather and print out as much information as you can and insist upon his or her testing you or sending you to someone who can. Good luck.
I have struggled with FMS & CFS since I was a teenager. I am currently 39. I have four children. These disorders can be very hard for small children to understand. When my children were younger I made up a system for them to understand how mommy felt that day. Once they learned it, they would come to me each morning and ask, "what kind of day are you having mommy?"
The Red light, Green light system:
Red Light Day:
If I'm in a lot of pain and just can't be touched ( no hugs, no jumping into mommy's arm, etc.) we called it a Red Light Day. Then they know to be careful around me.
Green Light Day:
If I can handle a hug or some extra play time with the kids then it's a green light day. Then the kids know ALMOST anything goes.
However, there are days when I feel in between.
Ergo, Yellow Light Day:
This is when I'm in pain but not so much that they can't give mommy a hug or go for a short walk with them.
5 years later... they still ask me or sometimes tell me what kind of day I'm having. It's a cute little bond that I have with them and no-one else.
Hi. Chronic pain is difficult for those who do not experience to understand. What I do with my doc is bring a list of my most recent symptoms and how it is specifically affecting what I do each day. I am very specific such as: The joint pain in my hands has reduced my ability to type on the computer. Rather than 1 hour per day, it's down to 1/2 per day I am able to continue. Etc, etc. Make notes of your pain, when you are feeling it and any other factors that may be exacerbating it. A journal is a great thing to keep track of how you are doing to show your doctor.
It is hard to explain to loved ones how it affects you without first, freaking them out, and second, leaving them with a feeling of helplessness.
I would recommend looking up the Spoon Theory on www.butyoudontlooksick.com - a very smart woman wrote down this theory for a friend who didn't understand how she had a ration her energy each day depending on the amount of pain she was in. It gave her friend a way to relate to how she was feeling.
Also, maybe assemble a short document that outlines the conditions, symptoms and what to watch for or danger signs. You want them informed but not too scared. You can maybe write a quick narrative about how it makes you feel, how is affects you physically and mentally and specifically things that your loved ones could to to help! That will give them some guidance.
I always make sure they understand if I am unable to participate in an event of some sort, it is not personal. It is simply I am feeling poorly and don't have the energy reserves. Try to give them something to relate to and give them some links to sources they can look up on their own as well.
Without them hearing about it and how it affects you, they will never understand. Good luck and I hope you are hanging in there.
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