I got an information sheet from Caremark that I might photocopy and hand to a few select friends and family members...not as an "in your face" thing, but because I haven't done a very good job of explaining it myself.

Here are a couple of excerpts from the sheet:

"For many patients, fatigue is the most disabling symptom of their disease..."

"The fatigue experienced by patients with MS is more severe than fatigue experienced by other people. This is because it is a neurological fatigue, associated with the MS disease process..."

"The extreme fatigue that characterizes multiple sclerosis is different from normal fatugue in that it: occurs daily; gets worse late in the day; manifests suddenly; often worsens with heat, physical exertion or emotional stress."

"The fatigue of MS has no direct correlation with a person's degree of physical impairment, nor does it occur because of depression..."

"One of the most frustrating aspects of MS is that sometimes friends, family or coworkers mistake fatigue for depression or laziness..."

You know what really gets my goat? When my neuro puts my fatigue off to depression...grrr! Maybe I ought to get a copy of that and mail it to him...

I'd hand it to him in person, Debbie, with the one finger salute.. JK.

Thanks blessings. We all know this, but I sure am glad it's in writing for our caregivers and others to see.

i have to agree.
in the summer the heat can almost paralyze me. i just can't move and my breathing is labored from the effort to move.

hit the nail on the head. if I get upset I get drained. that really upsets me, because I have a chaotic family and need to stand my ground sometimes, but am simply not able. I have just let it go, and that appears to be allowing them to win.

Thanks for this.

Actually, Dej, your Family loses...again!!

Thanks B2Y! This is great and so true!

Yesterday was a perfect example . . .I started to wash the dishes and got part way through and had to go lay down. It just hit out of the blue as it does every day. We all hit that brick wall and have not choice but to lay down and rest/nap. I am fortunate I have a pretty understanding DBF who just goes with the flow.

Thanks for this - the excerpts that you have included are really accurate. I would like to see the rest of this information sheet. Sounds like a good one to show colleagues, family and friends. My DH is wonderful - but I don't think even he really understands what it is like.

Lyn

I was telling my DS the other day that fatigue had really bitten me in the behind and I wasn't able to do the things I had wanted to do that particular day. He asked me if fatigue was a symptom of MS. How long have I had this? And how long have I been talking about various symptoms? Instead of trying to explain it for the thousandth time I simply asked him if he had ever taken the time to google MS and learn about it. He said he had looked it up before but hadn't really read that much about it. I told him I was done explaining things over and over. There's plenty of info on the web about MS if he is interested enough to learn about it. Does anyone else get irritated that family sometimes doesn't seem to care about learning just a little about what we contend with each and every day?

Hi this is carol and I had much fatique. Even though my neuro doesn't like me to take anything I do take aderol to help me and it does. Why suffer if you don't have too. Have you tried anything to help you.