who am I

Hi Ford

I hear what you are saying. GBS is a serious compromise. In the end (I believe) you are what you is.

I get a lot of questions about future goals, I dont give many answers. ‘I dunno’ has become my favourite.

However, I do take great notice of the folks who just wish me well, support me as I recover and dont get too nosy. I then note that these folks are the ones to keep close, the rest can bugger off.

These annoying people end up demonstrating that they are nosy, gossipy and fearful that they don’t have enough.

Of course, some have good intentions, but lack the social skills to see they should stop digging. I keep these folks at arm’s length.

Next time someone asks you what your future plans are, turn the question on them. Take notice of what worries them. Let them consider their own needs.

I dont expect this to help, it’s what works for me. I hope you can stay tough as you work through this.

best

Who am I
First of all I hear your frustration and experience some of the same frustrations, but your question struck a nerve. I began to do a before and after chart which focused on the things I couldn’t do. Then, I change direction and moved to the things that I can and do do. I am not working outside the home. I could not keep the pace that my job required. I am doing all of the housework, laundry and cooking. My wife (my rock) that is working outside of the home has more time to relax and do the things that she wants to do and enjoys doing. Not working, we can go away for a long weekend, sure it requires more planning and time for rest, we don’t do it often but if we want to we can.
I listen to at least two books on tape per week. Prior to GBS I was lucky to be able to read a book a month. I always did listen to books before when gardening or doing quiet chores. I have found I need two rest periods per day. I very seldom sleep and during my rest periods, I have found that listening to books keeps my mind from wandering into areas it needs not wander. I have become a driving passenger and other then my need to give direction (my job was supervision, I find it hard not to point out mistakes and how to avoid those mistake), my wife (my rock) is learning to tell me to be quiet and I am learning to listen to her. I find I enjoy being a passenger and take wonder in all the things along the road that I have never seen before. I am taking better care of my body, taking time to exercise routinely and eating better in nutrition, quality and enjoyment. I have learned to relax without worrying about what I should be doing. I am getting back into making wine, not on a large scale but enough for me and to give as gifts. I am not sure that not working outside the home is permanent but given my work schedule and my age (61) I am not sure I will be able to work again. My guess is that I am physically about 75% of my pre GBS physical abilities. I wish I was more then 75% and I’m sure I will be but I am satisfied if I stay at this level.
MY BIG WORRY!
Financially, with private long term insurance we will be OK. I am concerned about health Insurance. My wife might be able to get it but until I am off short term disability and insurance lapses (June 2011) we will not know for sure. Any idea?
Over all, I am happy with who I am and I thank you for raising the question and making me think. I could focus on the negative. Sure, I wish I never heard of or had GBS, but I also wish there were no wars, that all people were good, that wishes all come true. But it is what it is and I’m OK

This is a very, very hard situation that so few can understand. I have been told to “have a positive attitude, read a book, exercise, etc.” People have said, “Well she is better, right” to my husband. He says no, she is not. I tell people, “I am better, but not 100%”

I do periodically think about how I felt this time last year and how I feel now. Some things are better and some things are worse. You think about how people have much worse things and you can put it in perspective, but it does not invalidate your situation and your own struggles. I think you have to recognize that circumstances have changed, and you can strive to go back to pre-GBS, but that maybe you will never get back to that, which is ok. You have a “new you,” that you have to become acquainted with. Never give up hope though that things will improve and be thankful for what you do have in life. I personally have been going to therapy once a week for about 6 months, and this has helped. I would recommend that as an option.

Hi lovemyford,

I think each of us, when we are honest with ourselves, have felt many of the feelings you have expressed. Although, how we deal with those feelings varies widely. My recovery was helped in the very beginning by accepting that I was not the person I was pre-GBS. That reconciliation, allowed me the luxury of not comparing “old” Tom with “new” Tom and getting down on myself. But more importantly, it paved the way for a long slow recovery. And while that pathway was filled with ups and downs, it gave me a freedom that intrinsically helped me make it through each day.

If you analyze your every action, every day, against an unattainable goal or past life, it is a recipe for failure. Frustration, if channeled properly can help move you forward. As Jessica intimates your world is different now. If it is easier, take just one thing and try to make it grow in some small way. I still remember the day that after several weeks of treatment I could roll onto my side. No one said it would be easy.

Set realistic goals, cling to those who care, and believe that in time you will get better. Good luck to you.

I don’t know which is worse, GBS or CIDP. My doctor said I had GBS prior to my CIDP. But I don’t think I had GBS because I was never hospitalized or acutely paralyzed. I just became weaker and weaker gradually and could hardly walk, couldn’t even open a bottle of water, or clip my fingernails. I couldn’t even use a bath towel to dry myself because I was too weak to hold it. But I can do this little things now, which I used to take for granted.
Anyways, only my family and only a couple of my best friends know what I have. My work colleagues don’t know even know. I feel “ashamed” of what I have. Why do I feel like this? I feel really bummed out whenever I have to go for my treatments, even though it is helping me.
And yes, I can’t do a lot of things I would like to–aerobics, skiing, traveling etc. It’s like my life revolves around my treatments.
I worry about the future. How am I going to be like down the road?