Frustrated with my symptoms - Multiple Sclerosis Message Board

Delilah008 · 09-02-2008, 07:50 AM

I just feel like venting about my symptoms right now. I've been out of work since Wednesday and home since Thursday. I've finished my steroid IV treatment and now am on a pill taper. I am finding that I have pretty much zilch energy throughout the day and am still having some trouble with my balance.

It's weird, on Saturday (or as it Sunday?) I woke up and actually felt good. I had energy, I cleaned up around the house a little bit. It lasted for about an hour before I crashed. I don't fall asleep, I just feel absolutely exhausted. Sleep doesn't really seem to help.

I feel like I'm being incredibly lazy since all I've been doing for 5 days now is sitting in front of the computer and playing video games. At some points in the day I feel like I'm getting better, i.e. have more energy, walk better, and then it hits me all over again. My legs feel stiff and weak, my head feels like it's stuffed full of cotton and I'm dizzy.

I'm incredibly frustrated that it keeps going back and forth like this. Somehow, I still want to believe that I'm being overly dramatic and that this ISN'T really happening. I haven't even been able to lay on my back at night 'cause it spasms as soon as I try to relax my muscles.

Part of me wants to go back to work right now, but I have a physically demanding job that requires being up on my feet and moving all day. I can barely turn around in the hallway without grabbing onto a wall for support so obviously working it out of the question right now.

Sorry this is so whiny but I had to release this stuff somewhere.

Snoopy61 · 09-02-2008, 08:17 AM

Delilah,

You will need to take it slow. Getting a burst of energy is great unfortunately, it also makes you think you can do more than what you should be doing.

Focus on your mobility, your legs. Take very short walks - maybe out your door and pick a spot to walk to (not very far), turn around, go back inside, sit down and see how you feel. Close your eyes and sleep if you need to or just sit and rest for a bit. Do this 3 maybe 4 times a day and you will probably start to notice your able to increase your distance -slowly.

Your not lazy. Exacerbation can be exhausting and frustrating. Your not going to do steroids and then be back the way you were before the exacerbation, at least not right away.

Recovering from an exacerbation can be a slow frustrating process.

Talk to you boss and see what can be done to accomodate your current physical ability. You also have the right to use a wheelchair at work to help until you can get your legs to work better.

Delilah008 · 09-02-2008, 10:53 AM

Thanks Snoopy. I did as you suggested and my victory for the day is having walked to the mailbox to send some mail. My mantra the whole way was "walk like a normal person".

I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit.

redVWbug77 · 09-02-2008, 12:21 PM

I'm just guessing that you are NOT lazy. I have some good friends in the medical field that have spent years assurring me that I was not lazy before and I'm not lazy now; but, you do have MS and you have to learn to pace yourself.God luck

Snoopy61 · 09-02-2008, 02:56 PM

Quote:

Originally Posted by Delilah008

Thanks Snoopy. I did as you suggested and my victory for the day is having walked to the mailbox to send some mail. My mantra the whole way was "walk like a normal person".

I pretty much made it except for the wobbly doll moments. Let's see how I feel line a bit.

I am glad to hear you refer to making it to the mailbox and back as a victory

You might find using a walker helpful when out walking. It would help you be more stable. You don't have to think of the walker as permanent but as a way to help you recover your mobility in safety.

Let me know how it's going - I've been there....5 times. I know the frustration and tears as you try and regain your mobility.