I so agree. When I am having a sparkle day, I just want to get everything done and have fun, trouble is, i pay for it BIG TIME!! My last sparkle day laid me up for 5 days! I really find this balancing act between the ups, downs and meds to be quite the challenge. I have heard that it is something that we will get the hang of and be able to live within our normsI sure hope so.

I TOTALLY UNDERSTAND....IF I DON'T GET A GOOD NIGHTS SLEEP I'M TOAST THE NEXT DAY. AS I'M TYPING THIS I AM SO WEAK IN ALL THE MAJOR MUSCLES FROM YESTERDAY. I 'M IN THE PROCESS OF PACKING BOXES TO MOVE LATER ON THIS MONTH. YEP I OVER DID IT YESTERDAY. DIDN'T SLEEP BUT ABOUT AN HOUR LAST NIGHT AND NOW I'M PAYING DEARLY FOR IT.....TO SAY REST HELPS IS TO ME AN UNDERSTATEMENT, GOOD QUALITY REST IS WHAT I HAVE TO HAVE TO RECOUP. IT CAN HIT ME ALL OF A SUDDEN OR THE MG CAN APPEAR AND SLOWLY TAKE HOURS TO GET ME SO FATIGUED I HAVE TO STOP WHAT I'M DOING. HANG IN THERE AND TRY NOT TO OVER DO IT AND KNOW YOUR LIMITATIONS WHEN YOU FEEL GOOD.....AND I'LL TRY TO PRACTICE WHAT I PREACH.....LOL

It is a roller coaster ride for sure! I am so glad I have my DS family!

Today I am back to a 6-7 on my 1-10 scale. Had a CT scan of my Thymus this morning, that stressed me out. Clearly the test itself is not a big deal, its the ensuing call that i am sure to get with results. At any rate, one day leads to another and we keep moving forward... thanks everyone...

i wish you all the best and hoping that all works out great for you.

I have the same issues we've all talked about. SLEEP is so important. If I don't get enough sleep MG raises it's ugly head. Sometimes it takes me several days to recover. Thank goodness for DVR. I record anything I want that's to watch that's on after 9pm. I make sure anything I want to do is early in the day and I'm home by 8 or 9 pm. I also like to be able schedule a nap during the day to give me a burst of energy. I take full advantage of my sparkle days, but I try not to over due.

I, too, have been struggling with sleep. I have such difficulty sleeping and by the time the weekend comes, I end up being too exhausted to get out of bed. I end up sleeping the weekend away. Why is that? The weekends are when I want to play!!!!

I'm working diligently to develop a strict schedule with sleep, but to no avail yet.

In trying to reconcile the changes in my abilities, I don't mind so much that I can't do everything I once could; yet not being able to do much of anything is a difficult acceptance.

I'm still waiting for a good day to drop in and say 'hello' since being diagnosed .... I know it's out there :)

Babette ~
I totally sympathize with you on sleeping the weekend away. This last weekend was more of the same. It doesn't matter how much sleep I get, it always seems like it isn't enough. So Saturday I woke up at 9:30, went to my PCP for a follow up appointment. I dropped my husband off at the house and ran 1 errand and went straight back home. I was only out of the house for about 1 hr and 15 minutes. I plopped myself down on the sofa and realized I needed to be in bed. My husband helped me to the bed where I was fast asleep before he even left the room. That was at noon and I woke up at 5:15. I woke up to have some dinner and took another 2 hr nap. All told, I slept for a total of 19 hrs out of 24. I guess that's the price I pay to be able to hold a full time job. it really stinks but what else can we do?? Maureen ~ I am happy to hear that you were doing so well. I hope that you will get right back to your sparkle days. Hugs!
Angie

Sparkle days are a stretch, all of my energy goes to keeping the job going. No I am not suffering, but this is a he k of a way to live. Not a lot of energy left for the joyful parts of life ... As you say the price we pay to stay working.... Oh well better days are coming.