CFIDS/ME and Our Daily Lives

Talking about the level of debilitation that this disease causes. What it's like to live with CFIDS/ME.

Category:

People & Blogs

Tags:

• CFIDS
• CFS
• ME
• Chronic
• Fatigue
• Myalgic
• Disability
• Debilitation
• Pain
• Fibromyalgia
• Fibro

[ironbith]

EXactly! Thanx for making your vids. It helps so much to educate and support others like me. Did you subscribe to my page? you should and i will try to keep posting on good and bad days. Keep up the good work! Hugs!

[Carrigon]

Yes, I should be listed as a sub. You and I are so alike. I was into women's bodybuilding before I got sick.

[rockgor]

Thanks for taking the time and energy to make the video, Carrigon. With regard to tests, I have read there are tests that detect chronic fatigue syndrome. The problem is they are not part of the standard tests the doctors order. And they are expensive. As for being "invisible diseases", are cardiac conditions visible? Diabetes? Cancer? Cancer is not visible in the early stages. That's why tests are done for it.

[Carrigon]

There are immunological tests, the problem is, most doctors don't know anything about them and won't run them. I actually went in to my last doctor with a full list of immunological tests I wanted run and she didn't even run a fraction of them. She told me she had never heard of most of them and didn't know how to run them.

[nancypittman]

I am so happy you said the thangs you said! Because NO ONE understands nor will they! Unless they get it thereselves which i wouln't wish apon my worst enemy!

[wendiecbrock]

Thank you for sharing this. You are NOT alone! This is EXACTLY what happens to me.

Sending you healing thoughts!

[deadgirldreaming]

WELL SAID!

[nese67]

Yes I understand..I get the pain too

[Carrigon]

The ER does nothing for CFIDS, too. I actually tried a twelve page letter for my new doc's office and they didn't even bother to read most of it.

Prime example of telling you it's in your head, I broke a tiny bone in my foot years ago, they didn't see it on the first xrays and told me the foot pain was in my head! It was later found on a bone scan. But they actually told me the pain was in my head with a broken foot. And I had swelling and they still said it was mental.

[Carrigon]

Yes, that's the problem with invisible illness. And our society is not equipped to deal with people who are physically ill. It only seems setup for people who are disabled, but healthy and there is a huge difference. If someone is blind, but healthy, or if someone is missing one limb, but still fully healthy, there's just a huge difference there. They aren't dizzy, weak, lightheaded, passing out and all the other things we go through. We're expected to act like healthy people when we can't.