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Living with Polyneuropathy CIDP, GBS, & CMT

How To Let Go Of The Fear And Frustration?


#1

It's been 42 days since I was released. Last week I went on a trip to Cancun that was planned months before I got sick, and that was nonrefundable. My boyfriend and our two kids had been so excited about it for so long, and after all we went through when I got GBS in early February, it seemed like an overdue bit of fun.

Being there was not what I expected. Traveling was exhausting, the resort was huge so even just walking to the lobby wiped me out. I couldn't float in the pool, my legs were like anchors. Daily life is hard for me, and I prepared myself for vacation to be hard in the same way. But it wasn't. It was impossible. In hindsight I realize that I envisioned going on vacation to be a way to take a break from it all - including my recovery. But, of course, good ol' GBS came right along with me. I realize now how silly it was to think that. I couldn't walk in the sand because I would lose my balance. I couldn't keep up with the kids who were bouncing off the walls with excitement and energy. I couldn't enjoy any nightlife because my tired body demanded that I be in bed by 9pm and take naps every day. I was on the same schedule as my 2 year old.

We got through it, and after seven days there I am back home in New Jersey and I can barely walk. It's a struggle and I need my cane to get around my own home, I am struggling to do simple things like stand up from being seated on the couch. I tried to take it easy, but traveling exhausted me and now I am in constant fear that I pushed it too hard and am at the beginning of a relapse.

Relapsing is constantly in the back of my mind and I don't know how to battle that. I think I should just accept the fact that whatever is going to happen is going to happen, and I'm powerless against it - like I should somehow find it comforting... I don't know. I'm at a loss. I'm always frustrated by what I can't do and I'm always fearful that it's all going to start over and I'll be back in the hospital for weeks again. It's so hard to be told that no one can give me a timeline or an idea of what to expect because every body is different. Again - more frustration. I just don't know.


#2

How interesting to hear your story of your trip to Cancun with your family. I, too, took a trip about two months after my diagnosis with GBS. We had planned a European River Cruise long before I was diagnosed.....it was two weeks long. I went with lots of excitement, and permission from my neurologist. The first week I did pretty well; the second week, I basically fell apart, pretty much stayed on the boat all week and was fearful of ending up in a hospital where I couldn't communicate with the medical personnel. All my past experiences of being sick had been that one gets sick and then gets over it. That did not quite happen with GBS.

I am now seventeen months on this journey. I am feeling much better although I am still fatigued sometimes and sense heaviness in my legs periodically, but much less frequently than in the early stages. I certainly do not have my previous energy levels back. But I am getting better. I have discovered that I can't handle stress and continual physical output like I used to....so I am trying to learn to pace myself. That is not always easy. I have come to realize through talking with a few people and seeing some writings in these support groups, that this is a typical path for recovery. Hang in there. You will gradually regain your strength. Allow yourself the time needed for your body to repair itself. You will move forward in your healing process. Best wishes to you. May you be able to keep a positive spirit and give yourself permission to take care of yourself.


#3

Thank you for your response. I'm back in the hospital. The weakness just got more and more intense over the last two weeks, and yesterday i started falling again, unable to walk or stand on my own, even with a cane and walker. Today it felt like paralysis again so I went to the ER. I'm scared, but in a way that is familiar. The first time I had no idea what was happening and feared that this was going to be a life sentence. This time I have faith in the treatment and the support of this group.


#4



BrokenBear said:

Thank you for your response. I'm back in the hospital. The weakness just got more and more intense over the last two weeks, and yesterday i started falling again, unable to walk or stand on my own, even with a cane and walker. Today it felt like paralysis again so I went to the ER. I'm scared, but in a way that is familiar. The first time I had no idea what was happening and feared that this was going to be a life sentence. This time I have faith in the treatment and the support of this group.


#5

Oh my goodness! I am so sorry to hear that you are back in the hospital. Please know that I am thinking of you and I will be praying for you. May you have a peaceful night and be able to rest well. May tomorrow be a day of getting stronger.


#6

How are you doing Broken Bear? Are you still in the hospital?


#7

Hi Kimberly - yes I am still in the hospital. Day 15. But yesterday I started plasmapheresis, and the results after one treatment are promising. I have five more treatments, every other day and wrapping up on May 6th. I hope to be home by Mother's Day.