It’s been a while

Jen,

It is good to see you posting again!
Dr. Hahn is an amazing doctor by all accounts. I have heard her name mentioned a number of times when it comes to GBS/CIDP, so i really believe you are in some of the best hands you can be in.
I realize I am older and dont have relapses as badly as you have them, but I have sat down so many times and tried to find the reason this has happened, surely there must be a reason? I believe there is, but I am bitter and angry and depressed many times – however it is getting less. How often I have spoken to people who mention someone who is severely disabled, the thing that stands out is that the person they speak of has such grace in their adversity, great compassion and I have to add Faith.
I wish there was something I could do to lift the burden you feel at the moment, but am glad you posted because as you said, this site is wonderful to uplift and support you! Please keep us updated on how you are feeling.

I was told that CIDP is chronic and will never completly go away. I would like to think that the remission that I am in will last forever and that everyone that has been affected by this will also go into their own remission and never have to hurt and be afraid again. best wishes and keep fighting the good fight..

Jenn911, Just take your time and dont stress. I have been in your boat four times. Getting weak where you can even use your hands and walking is all most impossible. Then months later being alot stronger and not needing help moving around. It is a cycle with me for some strange reason. Just keep your head up and keep fighting. Only time will help you and your nerves.

Jenn911,
Although I can’t say I’m used to the relapsing/remitting cycle it has helped tremendously to actually plot it out on a calendar so I can start seeing patterns and thus plan my life a little better. I’ve been keeping a chart of my temperature for over a year now and I started adding in the relapses and their symptoms a few months ago. I’m now starting to see patterns better and have actually been able to PLAN things recently as well. Keep your fingers crossed for next Thursday night, I’m PLANNING to go see Neil Young in concert with my husband. And will expect to feel like crap the three days following the concert, however, I planned my IVIg during that time because I knew I wasn’t going to want to bounce around the house anyway.

I don’t know if you ever get used to the relapsing/remitting issues but at least having some kind of pattern has enabled me to take more control of my life. As we all say here, everyone is different, but I think all humans share a need to feel they have some control in their lives. So what is a normal life anyway? I mean I look around me and see these soccer mom’s frantically dashing from place to place so their kids can go to this or that sports practice/game. They live for their “girls night out” wherein they get really drunk, complain about their husbands and kids, and compete with each other as to who has the smartest/most atheletic or beautiful children. If that is normal, I’ll pass.

Take care, hang in there and start making some notes on a calander. Who knows? Maybe you’ll find the pattern quickly and be able to start making some plans.

Julie

Great topic and great advice. I have also been tracking symptoms and finding a pattern but not quite enough to start planning. Today was one of my not so good days. Weak, could barely do OT and exhausted. I felt defeated and discouraged because my big concern is, how will I ever work again if I am having these cycles of strength and weakness? Does anyone ever get off of disability and if so do you get to go back on if you can’t work? I just feel like I don’t know how to plan my future. I live so day by day and am starting to feel useless. Sorry to intercept this post Jenn. I just feel where you are about resolving this in your mind about living like this forever. Hang in and like Julie said, use a calendar, it is helpful visually.
Thanks,
Linda

Jenn911,

The first word of CIDP is Chronic. I know it is hard to hear, but it will go on, probably the rest of your life. The last time I heard the statistics, about 5% of CIDP’ers spontaneously remit. It goes away for no reason. I always hope it decides to quit on me, but really I know I will have to deal with mine forever. I was diagnosed when I was 43, I had it since 1989 but remained undiagnosed until 1999.

That leaves you in the situation of how you will deal with this in the future. This is the way you need to look at your condition. There are things you can do to minimize the duration and severity of your remissions. Do them. There are things that you do that will make your life worse, don’t do them. Most people can deal with CIDP with minimal disruption to their life. MOst people are knocked down with relapses, but are mostly functional in between relapses.

This forum has a lot of good information on how to deal with the down times. Remember that most CIDP’ers are here(on the forum) for a little while, they gather information, talk about the disease, and move on. Generally the ones who are here the longest are the ones that have it worse than most. Remember that generally it is not that bad.

I don’t mean in any way to say that your relapses are not that severe, I am sure that they affect you greatly, or else you wouldn’t be writing. I sincerely wish you the best as you struggle through this period. But you can, and will make it through this. The things you need to remember are:
1.) What body changes preceeded the relapse?
2.) How fast did the relpase progress?
3.) How long did the relapse last?
4.) What medications were effective in releiving your discomfort?

and then afterwards
5.) How long did it take for recovery?
6.) What things made me over-tired during recovery?

And generally, what kinds of things make you feel better? Like flowers, music, movies, reading, other outside stimuli ?

After a trime you can learn how to recognize an upcoming relapse, and like some others suggested, keeping a chart will help you anticipate them. If you do good things prior to the relapse, it might not be as bad, and then let yourself rest and recover before going back to life full blast should help you stay recovered longer.

I am sorry for my bad typing, but my fingers don’t hit all the keys jusdt right anymore. Good luck, I hope and pray for the best.

Dick S

Glad you got your treatment and are feeling better. Take care.
MJ