[weeble37]

This is from my blog today about how I feel so crappy and down. Please tell me I am not alone. I just need a little boost.

"Today is one of those days where you want to just fast forward past it to the good stuff. I am hoping that there is some good stuff coming tomorrow. I know it sure isn't knocking around in my brain or body today.

School starts soon for me, in two weeks and some change. Normally, at this time in August I am chomping at the bit, itching to get back in to my room to arrange it and get everything set up. Today I feel like that is a marathon of activity and I can't even envision doing it.

I'm not generally like this. I am usually happy, peppy, perky, smiley. Right now I feel completely defeated. I hate it. I feel like I hate me.

My fatigue is at a new summer high and a week on Ritalin which was supposed to "super duper pep me up" hasn't done anything. I sleep through the Ritalin. It does nothing for me.

I make the call to the neurologist's office, a call I really should have made tomorrow because that is one week since my last visit, and check in on the Ritalin wipe out and my week-long Rebif vacation. I am in a bad way, dear readers.

The doctor himself calls back to tell me the person I usually see is out of the office for the week but let's chat about my issues. Here's how the conversation went, not verbatim of course because I have MS:

Dr: I got a message to call you back.

Me: I left them information about the Ritalin, the Rebif and the fatigue. Did you get any of that message?

Dr: Yes, I see you are feeling more fatigued on the Ritalin. How tired are you?

Me: I can take the Ritalin and fall asleep an hour later. I can barely stay awake. I'm sleeping more than twelve hours a day, most days. When I am driving I can barely stay awake. I have to start work in two weeks. I'm really worried about getting through this fatigue.

Dr: Okay, just stop driving; that's not safe for you. Take the Ritalin for another week because sometimes it takes a while to kick in. Stay off your Rebif for another week and see if that makes any difference. Call me in another week.

There were more words in there but you get the gist. I wanted to say, "Seriously? Are you even listening to me?"

I know my body and how it's not working and how I feel like I am in a pit dug deep into the earth. I can hardly smile. I am depressed and I know it. I take meds for that depression but how long do I have to deal with this crap? It's been almost all my summer vacation where I have felt like dung. I'm supposed to be recharging my batteries here, not just hoping that the dead ones will make flashlight work.

I was hoping that when I called in I would get some sort of life rope thrown to me. I wasn't planning on being pushed under the water.

Especially after a visit last week when we were discussing a possible move to a new drug, Tysabri. We even discussed IV steroids last week and I hate, hate, hate them and I was going to say today, "Please order me a course of IV 'roids. I'm willing to do anything so I can feel better and be stronger for work."

I came home from doing some summer curriculum work this afternoon and I sat down and cried. I'm just wondering when I'll get to be me again. Apparently it won't be today."

If you read all the way through, thanks. I just need to feel positive and alive because I am just worn out. I am so tired of being told to wait another week.

Thanks,
Weebs

[weegot5kiz]

Weeb I know how, actually am sure we all know how depressing this illness can get, as it slowly and some times quickly take away a bit more of who we are or what we were. you are this now and unfortunately it is how you must accept it, yeah it bites,

it does take time to adjust to meds but it is also a illness where certain meds may work for some and do certain things while other folks it does naught for them.

never fun when the neuro is out of town, I know its probably gnawing at you, but i must say sitting with neuro and doing a total rethink on meds, would be good, there are other stimulants that can be used and yes sometimes it takes time to get the meds all working together,

try to hang in there and dont beat yourself up over things, it will only add to the stress level and stress sucks the life out of you, so hang in there and I pray the tomorrows start becoming brighter

[Snoopy]

When fatigue meds don't work and Ritilan does nothing I then think of a sleep disorder.

There is a high incident of those with MS having sleep disorders. A simple sleep study would answer that question quite easily. Sleep disorders can affect your quality of life.

You don't need to see your neuro for this. If you have a PCP he or she can get a sleep study set up.

Think about it

[dmplaura]

Aww hugs weeble.

You may wobble but we won't let you fall down!

I think the sleep study suggestion is excellent! I read your blog. I can imagine not only the frustration from the sleep situation, but trying to get things in order pending the school year beginning.

Thinking of you!

[weeble37]

Thanks for the suggestions.

I do have sleep apnea and use a CPAP for all naps and every night. I've done that for several years. Never really experienced any "oh I feel so refreshed moments" while using it.

I normally take Provigil at 400 mg. By the end of the school year that had completely pooped out and stopped working. I have been off it most of the summer until recently when I started doing some curriculum work last week.

I have just a constant fatigue and I can't sleep the way my body needs once school starts. I have to be up around 5:30ish and I go to bed around 9 during the school year. I often find myself driving to work on the edge of exhaustion waiting for the meds to wake me up.

So neuro suggested 10mg of Ritalin which has no effect, at least the Provigil works some of the time.

In addition to the fatigue, I have constant issues with my hands and loss of grip and strength. I just finished OT for that. Walking and legs are on and off again and have been all summer.

I've felt rotten since June with a pretty much constant decline. Hard to be a great teacher when you're exhausted, can't hold anything and have trouble walking and moving.

I'm trying though. I will go in tomorrow to move some things around and try to set up my room. That takes days as everything has to be taken down and picked up and packed away.

Thanks again for the responses,
Weebs

[SallyC]

(((((((((((((Weebs)))))))))))))

[Bearygood]

Weeble, I don't have any great pieces of advice but I just wanted to give you a big . I'm sure you know that when you don't feel well rested, things can certainly feel overwhelming and darker than they really are. When I have days like that I have to work hard to remind myself that this a temporary situation. Have you had a full blood work-up recently -- thyroid, B-12, etc. to investigate if there is something else at play?

I hope this passes soon!

[Gazelle]

If there were bigger ones, I'd give you those too.


Is there any way that you can get some accommodations for work? Maybe that would help cut down on some of your fatigue with work.

Don't give up with the doc. Maybe there IS something out there that may help.

[AfterMyNap]

Aw, nuts, Weeb. I'm sorry to learn about this. How long have you been on the AD? Sometimes they literally up and quit working for no apparent reason; is it time to switch to another one?

I agree with Snoopy, the sleep study might be a good idea if only to rule out/confirm the possibility.

Take care, we need good teachers and I thank you for being one.

[Taffy]

I hope this coming school year goes smoothly for you!