Tired

General General CIDP Discussion
1

Okay, I am sorry, but I have to vent.

I have tried and tried to "get on with my life" but it doesn't seem to be happening. I am SO tired:

Tired of being tired.

Tired of having to explain why I can't do things because people (who know I have this disease) just don't get it.

Tired of taking SO MANY FLIPPIN' PILLS!

Tired of having to go the the hospital two days a week to get IVIG.

Tired of how the IVIG and prednisone make me feel.

Tired of how prednisone makes me LOOK (big belly, thin arms/legs... I look like a troll).

Tired of not being able to come off of any of these meds because this stupid disease just won't quit terrorizing me.

I'm so sorry, I know there are people who have it worse than I do. But, I hate being on the edge. Am I sick or aren't I? I am well enough to get up and do some things, but not well enough to do what I really want to do. I am well enough to go and sit at a desk, but not do anything remotely strenuous. I used to be so active, but now, I have enough energy to go to work and then go home and crash. Nice. Great way to spend time with my kiddo.

EVERYTHING I do is revolving around this disease. All plans I make are made with this disease in the equation.

I mourn for my past life. The days when I could go for a run just because I wanted to. Now, if I try to even trot, I get weak and my knees almost buckle. I miss the person I used to be. Yeah, I know, "You're still the same person." No, I'm not. Physically, I'm totally different. And the physical limitations have changed my outlook on life. So, mentally and emotionally, I'm different too.

Thank you for taking the time to read this. I had to get this off my chest. Maybe I'll feel better knowing that this is out there and I was finally able to say what I needed to say.

Thanks again.

2

Dear Eaetaylor,

It's much healthier to vent than hold it all in. I just came home from the infusion center after my second IVIG infusion. I was so excited to have three pain free days after the loading infusion, until the pain came back. During the next two weeks, I thought it was doing nothing. This weekend, I began to realize that my perception of what was happening to me was off. I had trouble getting up the stairs again.I don't think I have a clear picture of me anymore. But, when I wonder where that other person I used to be is, I know I'm not alone thanks to this group. I do love to read about people here who have experienced remissions, even if temporary.

Most importantly, your feelings are important because they are your feelings and how you see yourself. Our feelings are valid and need to be respected.

Here's hoping that things turn around for you and everyone else!

Hang in there!

Jan

3

Hello Tired . I hope today has been a better day for you, with many more to follow. I must say that when I read your post I knew that I needed to reply, but I did not know how to respond. Your post encapsulates how many of us feel, depending where our cidp journey has taken us.

I hear the utter frustration, see the unfairness of it all, and understand the mourning for a lifestyle that has been ripped away. Your words resonate.The tiredness you speak about is real. This disease is so confusing, and how in the world can you explain it to someone who has never experienced it. I have people at work telling me "you are the healthiest looking sick person I have every seen. I wish I felt as I good as I look.

However , my message is not to make you feel worse about your situation, but to acknowledge it. Know that there are many that feel and empathize with your loss and pain. Thank you for sharing. I will keep you and your Kiddo in my prayers. Stay strong.

Charles

4

MY THOUGHTS ARE WITH YOU AND VENT ALL YOU WANT TO BECAUSE YOU HAVE ARIGHT TO. ALTHOUGH MY CONDITION WITH CIDP IS NOT AT YOUR LEVEL I CAN STILL RELATE FOR TO YOUR ANGUISH. THERE DAYS OR TIMES I FEEL FAIRLY NORMAL AND THEN THIS CRAP DOES A PEARL HARBOR ON ME AND I JUST WANT TO CRAWL INTO A HOLE SOMEWHERE AND TELL THE WORLD TO GO AWAY UNTIL I CAN BOUNCE BACK. BEST OF LUCK.