Dumb, dumb, dumb

Okay, that was stupid. I was sitting at my desk when a coworker asked me to help her move a small table. "What could it hurt?" I thought. I just had my IVIG, yesterday, so I should be good, right?


I am shot. Can barely catch my breath, my arms are shaking and my legs are all tingly.

At what point am I going to realize that it's not that I don't want to do these things, it's just that I CAN'T?!?!

I am doubly frustrated, right now. First, at myself for not being more cognitive of my situation. Second, for being in this situation to begin with. Reaching that "mad at the world" phase, again.

Recently, doc said this may never go away...really? I'm going to be like this for the rest of my life? Great. If this is what I have to look forward to, that's just fabulous.

Sorry. End of rant.

Hang in there, eaetaylor. Docs sometimes dabble in fortune telling and predicting the future, but honestly they aren't that great at it. A medical advance could come along in the next decade that could be a total game-changer for you and other CIDP survivors. I hope there will be.

In the meantime, don't beat yourself up. It's hard to be hypervigilant all the time. I hope you feel better soon.

I think its common with CIDP that we're all our own worst enemies, I think theres obviously some specific brain damage that prevents us from acknowledging that we cant do things like we used to.

Back in the days I could still drive and had a car I would give it a good wash and valet every weekend even though I knew that would mean collapsing on the sofa for the rest of the day unable to do anything and feeling like death warmed up.

Even today if someone asked me to help them move a wardrobe I still wouldn't think 'hang on a minute your gonna regret this' and go ahead and say OK.

Well to be on the top side of six foot under is a gift. I get frustrated even a little mad. So I began making an effort in poetry. Not to rune or stand out in any way. But as a means to look for ways to verbalize what I see. What is beautiful as it I were describing it to a blind man. My hope is I will eventually learn to communicate in short rhythmic stories that are detailed fun and entertaining . Then I will start taking guitar lessons . Maybe some day I will write songs and Blau music that is happy and inspirational . For now I will practice and do what I can and what I was always to busy to do.

Well... I recognise that I haven't given that much of a thought to all of what you mention. But now that I think about it, you're right.
The other day I was riding my bike and I decided to go to a park nearby. It was 20 blocks away and there is a climb 8 blocks away from my house. I had to stop in a plateau because I just couldn't do it. And it wasn't a big climb! People were going up and down and it was ok for them. I had to stop, breath deeply for a few minutes, drink some water and stuff.
Besides, I'm a bit overweight so, it made it worse.
It's weird how everybody, no matter how overweight they are, can easily ride a bike withouth getting tired and I can't. I decided to go step by step and see what happens.
Next time I'm taking with me a bigger bottle of water!

I started a new infusion rate/schedule and the last infusion didn't bring me up to a normal state. I was therefore in extreme pain, stiffness and disability. Usually, an infusion takes 3-4 days to come online for me. My neuro is still trying to find the optimal dose.

Anyway, instead of remaining in pain and suffering, I went for my usual swim of 90 minutes of non-stop lap swimming. I paid the price that night, but the next day the IgG came online and I felt I'd reached 80%.

I am thoroughly convinced that forcing myself into extreme exercise removes many of the effects of CIDP and I feel think that I have not fallen into a worse state of disability because of strenuous exercise over a ten year+ period.

I'm with estaban. I think the more I push myself physically, the better I feel. Yeah, my feet hurt like crazy at night if I do a bunch of walking, but oh well.

And if doctors really could tell the future, they'd be buying lottery tickets.