What Happens After the Storm?

I was diagnosed with GBS in 2008 and, from my understanding, made a fairly quick recovery considering the difficult and long journey that most patients face during the healing process. I spent 2 weeks in ICU and received IVIG treatments, another week on a general hospital floor, and 4 weeks in a rehab facility. I went home with a walker and a renewed appreciation for life in general. I vowed to exercise, eat better, and conquer the world. How quickly we lose such newfound perspectives.....

My mother, a Registered Nurse, was my saving grace during this period in my life. My husband was working night shifts and I had an 11-month old daughter to care for. My Mom stepped in and we settled into a routine - she would come over and help clean and cook and bathe my daughter. She helped both of us into our pajamas at night ( I was still having minor difficulty with some tasks) and would stay up and fold laundry after we fell asleep. Me, the control freak, had to give up control for the first time in a LONG time. I had to accept that I needed help. I had to bury my guilt. I felt ashamed and frustrated that I couldn't take care of my child. Most days, I was too tired and weary to really do much and the couch in our living room was my "sick" bed.

I went to physical therapy and follow-up appointments with my neurologist and read material on others with GBS. I was a good patient, I think. When I felt I had made a full recovery and with the clearance from my doctor, I returned to work. I put the past behind me. I moved on as best I could......with constant fear in the back of my mind that I would relapse and experience this all over again. Or, worse, that I had been misdiagnosed and this disease was really something else that would surely rear its ugly head in the future.

I don't think I ever really dealt with the emotional consequences of GBS. Two years later, I started having major panic attacks and anxiety. I feared death and the "unknown." I feared giving up control once again. I was stricken with a "what-if" mentality, convinced that every day was probably my last as some terrible calamity was certain to happen to ME. I have become a hypochondriac. I went back to my neuro a year ago because of some tingling in my legs and discovered a B12 and D deficiency. I have complained of severe fatigue. I have felt depressed because I have not felt like myself since GBS. I have been waiting four years for the other shoe to drop......

So, I pose this question now to myself and others. What does happen after the storm? How do we move on and live? What happens to us emotionally and mentally after dealing with GBS? Will life ever be the same again? It's been four years since my recovery, and some of these questions I am asking myself for the first time.

Please join our CIDP community. It sounds like you would fit in fine with our group. I know that I spent many days thinking all the thoughts and having all the feelings you describe. Once I realized that I would have to live with this condition always, I decided to just make it a part of my everyday life that was probably never going to go away.

In a strange way, that was a relief. There is now no pressure to find a cure. I know that I must always cope. It is a chronic condition that I just live with every moment. Somedays are good and somedays are not so good -- but I can walk, drive, work, go on a vacation, get myself dressed without assistance, hug my wife, kids, and enjoy my grand daughters. I just do things a little slower and get fatigued if I push too hard. But that is my normal and I am happy to be able to enjoy every minute.

On the bad days, I remember how it was when I had GBS and then I feel better. At least I can lift up my legs so that I can get in and out of bed. Oh Happy day.

Love this… I ask myself this every day I’m laying in my hospital bed waiting to fall asleep and my mind starts wondering