When is recovery?

Hi Jenn, I just posted a similar answer elsewhere on this forum, but I think recovery is all relative. Mostly I think it means when you can walk again. But just getting to a point where I was even able to go to the bathroom by myself made me feel fantastic. And when I was able to walk to classes with a cane I was thrilled. It kept getting better slowly, but every positive step felt like another piece of recovery.

I still have some residuals and I keep working on them. The hands and feet are still bad but I don’t have the pain that others have had. I still have bad days and good days. For instance with the hands and feet sometimes the hands are numb up to the wrist….other days they are just in the tips of the fingers….those are good days. Usually when the hands are having a good day the feet are too. Just the toes feel funny. Some days I feel like I am wearing very tight socks. Especially when I am getting into the shower I double check to make sure I don’t have slippers on my feet. When I stop having good days and bad days and don’t see any progress for months then I would say I am slowing down, but from what I have read others gain things back after a year or so. Takes time for the nerve sheath to heal and then the nerve damage to repair and regrow if any damage was done there. I hope your Mom has many good days now! As the caregiver you can relax more too! We love our caregivers this much! ((((((((HUGS))))))))))

Jenn,

I’ve been trying to think what to write to you so that I could be of help. Sitting here has made me realize that I am now at the stage where I try to ‘roll with the punches’. I had almost 18 years after the onset of GBS that I led a relatively normal life. I didnt realize the fatigue I felt was a residual, also didnt realize the pain in my feet were residuals either – which was good because I didnt feel sorry for myself, I just tried to ignore it and carry on with life. Now, with the worsening of residuals, I’ve been through every possible emotion. Upset, denial, dispair, anger, (again)denial, feeling sorry for myself, and so the circle continued/s ….. that is until now, realizing that I now have added the word acceptance (or ‘roll with the punches’) to the circle. I am still what I consider to be young, having turned 40 in Feb, so I didnt want to accept this ‘disability’. I know I will have good and bad days still, but I think the last week or so there is a certain peace – I honestly pray that I feel like this more often than not.
…….. Maybe what I’m trying to say is that, your moms recovery may be long and hard, or it may even be shorter than some, but sometimes our psychological issues stand in our way. You are obviously there for her in her time of need. Understand all the emotions she will go through trying to deal with fatigue or possible pain as well as the frustration and anger she may feel. Let her know that we are thinking of her too.

Jen Ali said it totally. the only thing I can add is to get your mom thinking postive and look every day for improvement. My GBS was mild and I was blessed. I am walking without my cane. One thing I did do was to turn myself over to God totally and from that moment my recovery was easier. I have you and your mom in my prayers and a care giver is a gift from God. Bless you

THANK YOU…………..Gene

I am a husband of a GBS’er. My wife is about 15 months post diagnois and I would guess that she is 98% recovered in walking and strength, but she still has pins and needles in feet and it is probably about 15% as strong and uncomfortable as it used to be. Everyone is different. I praise the Lord for all He has done for my wife everyday and pray that she will continue to get better.