I Am Disabled and People Tell Me On a Regular Basis That They Would Rather Die Than Be Like Me

[MADem]

122. Peter Rowe, who is the MD mentioned in the article, did a very comprehensive study

on this topic, identifying the physical manifestations that so many doctors pooh-poohed and said were all in the patients' heads. If you pass out during a tilt table test, you're a sufferer. Orthostatic hypotension (standing in one place, getting lightheaded, even passing out--or getting irritable when standing in a line) is a classic feature of the condition. That is a component of the "exhaustion" you feel.

I have met the good doctor--smart guy. He "gets" it. You're not crazy--you don't "need a shrink," it's a real condition and they don't yet know how to fix it. It can be managed, though, to some extent. You'll never get it all back, though, and that's something you have to kind of deal with.

Not medical advice, but a suggestion that might help you if you don't have one already--invest in a barcolounger. A GOOD one. One that is wide, comfortable, is easy to recline (electric if you really want to be jazzy and don't lose power often) and that you can sleep in, if needs must. Be like Archie Bunker with that chair--it's YOURS. No one else's. That is a non-negotiable point. Key to management of the condition is RESTORATIVE sleep and the more comfortable you can make yourself, the better off you will be. The chair will put you in a position with the least pressure on your body and it will put your feet up above your heart which is a good way to crash. Keep a warm, long blanket close to hand and make sure you cover your feet--the warmer you are, the easier it is to sleeeeeeeeeeeep. Every time you get a good round of sleep, pat yourself on the back. Make it a goal to sleep WELL. Make sure everyone around you knows that it is vital to your well-being, more so than the average person.

Also, don't do anything you don't want to do. Don't "feel obligated," don't over-extend yourself, and learn to say NO. No, NO, NO!!! After the first hundred times, it gets easier! Eat well, be selfish--sounds self-centered, but you absolutely have to take care of yourself first, because if you don't, you will be of no use to anyone else--I'm sure you know all this but sometimes it's nice to get reinforcement.

It's not a walk in the park--the only way to manage it is to put yourself first.

http://solvecfs.org/research/cfidsaa-research-program-for-researchers/neuromuscular-strain-in-cfs/