I feel tired all of the time and people with out MS just don't get it. I have to babysit a few days a week so that gets me up, but if I didn't have that I would be in bed all of the time!

I can totally relate. I can do about an hour of activity (of any kind) then I need to sleep for a couple hours. It totally sucks, and yes, it's depressing. Especially when you used to do so much and you start to realize that you just can't anymore.

Don't give up, though. Whatever it takes for you to get through it is what you'll do. You'll be ok and we're all here to support you. Best of luck!

I can totally relate with you, although I'm up more than 3 hours a day. Maybe 6 hours a day.

I have a full time job which I don't work full time, but when I'm working, I'm busting my butt. I try to spend time putting a dinner together maybe one or two days a week. The rest of the time everyone can fair for themselves or we do carry out, but that becomes expensive.

It is a bummer that I just don't have the energy to feel like I'm doing anything but surviving. I don't have the energy to hardly shower. If I don't shower early in the day, forget it. It doesn't get done. I fall asleep around 6:30-7:00 and then have a hard time sleeping during the night when most of the house is asleep. I can't get up in the morning, because I'm tired from being awake during the night, and do nothing but watch stupid television because there is nothing else to do.

So, I basically feel like I'm a slave to MS. It controls my whole life. I have MS, and no, I don't control it - it controls me.

Itchy, I'm so sorry to hear that. It sucks not being able to sleep, then being fatigued all the time. If I don't sleep for a few days, I'll take a sleeping pill, so I don't go crazy. Maybe try a sleeping pill?

You're still one up on me - good for you that you're still working. MS took that away from me and it really pissed me off. I loved my job. I hope that things get better for you.

chicagogrl: I do sometimes take a sleeping pill, in fact, most nights. If not I would be awake all night long, but can't help feeling totally exhausted by 7:00 in the evening and needing a nap.

I completely understand where you are coming from. I feel the exact same way. I am always exhausted. I grocery shop (with help) for an hour and a half, and sleep for four. I am contemplating leaving work because I am having a hard time keeping up with it.

Maybe medical marijuana would help? I know of a prescribing doctor in Palm Desert, CA who will give you a medical card, and you can buy the mj food there. Want the info?

I have not tried it, but I may for my spacticity. Reluctant. Any experience with this anyone?

Exercise is so helpful. If you give it a chance, you will find that it takes away the pain, boosts the seratonin and makes you feel better all the way around. It is the cure to depression too. It gets the oxygen moving and revitalizes the body, mind and spirit - it all works hand in hand. IT's a beautiful synergy. Give it a try and you will be glad you did.

Lorrie...can't exercise is what she's saying. She can't. We all have MS but some of us have it worse. I completely relate to this post. I lay in bed CONSTANTLY because I simply CANT MOVE. I CANT EXERCISE and I used to kickbox so don't get in your head I never moved before either. I was the complete opposite of myself--always moving, working ful time, exercising, etc.
Now I am same as you guys here--only good for 2 hrs of sitting at the most and maybe a couple minutes of standing. I can walk a few blocks SLOWLY and then I'm spent for a day sometimes two.
Pain, fatigue--those are my chains. And they are unbreakable believe me.
I don't have any way out of it just wanted to say I relate--all the things you could do to help like exercise you actually physically cant do. I'm impressed you volunteer or that some of you still work. I haven't even driven a car in years--quit working in 08 and could never volunteer anywhere unless they need help for ten minute intervals...

I have hobbies and they keep me sane while I am stuck in bed. I also use cannabis, and that makes it so I can get up to shower or do a small amount of dishes or something cook a short meal. Cannabis helps me sit up even--otherwise I'd always be on my back.
I definitely recommend it.

Hang in there! You're not alone!

Humunculus, How old are you and how long have you had ms? SO.. If MS is a progressive disease, looks like i could really be stuck in bed. Ive been dx since 2005 and all I have mostly is the horrible fatigue and pain in my legs. Not looking forward to the future, however I do try to keep a decent spirit about things. ANd I do believe a better treatment if not a cure will come along soon.

be careful of being stuck in bed too much---i'm listening to the reports on gabby the woman who was shot in the head i phenox, arizona.

they kept her breathing tube in after she was able to breath on her own, until she was sitting up and her lungs would clear better-to avoid pneumonia from being bed ridding when her lungs don't clear as well. if your gonna be in bed for a long time, think about sitting up in a recliner, instead, to avoid situation that promote future pneumonia..

yeah, being in bed all the time cant be good for you. I sure hope that lady Gabba comes through with little problems. That would be awesome, I know GOD has a plan for her life.

I went to the mall with my kids today. That was my exercise.

Not making light of your situation, but my exercise consists of taking my little 6lb. dog out, ha ha. . I live on the 2nd floor too at a apt .complex so that gives my legs some extra exercise too. I try to take my dog out at least 3 times a day, its best for her and me, but sometimes we only make it once a day, sometimes two. She will "most of the time' use the puppy pads when I dont/cant/wont take her out. My daughter says im no fun, all i do it sit around or in bed :(.

I can say that I am "in couch" most of the day. While lying down I not not feel my MS 99% of the time, so lying down helps me mentally. But I have to get up and move around. I do more than take a dog for a walk but I would not want to go up and down stairs. I always take an elevator since I have had MS. But I have to get up and do everything because no one is going to do it for me.

But don't be too discouraged by the future, carolinagirl. It can be a slow progression. Everyone is different. But the best thing is to take care of yourself as best as possible. And for me I think that interferon is really keeping the progression down. I hate the side effects sometimes but the alternative was not good when I went off of interferon.

So good luck with this disease, carolinagirl. I have had the disease officically for around 13-14 years and unofficially for around 28 years. So don't get too discouraged about it.