Positive things about having GBS

I’m with you on the guilt free naps! Working at a daycare, I was always jealous when my kids got to nap. Now I have that privilege!

Something I think is positive is finding out who my friends really are. The ones that never asked how I was or hoped I’d feel better, complained about me not being at work etc. no longer get my attention. And people I didn’t know showed support which I truly appreciated, my mom’s coworker visited me at the hospital and brought me a bunch of good food which I was so thankful for.

I guess I got a much needed break from work, that’s a positive. I would never have taken a vacation otherwise (well, except for the cruise I was supposed to go on the week after I was diagnosed).

Let’s see…..positives…..I promised my daughter when I was at my worst that if I got better, we’d take a “real” family vacation this year. In March, we were able to go to Disney World. I am not a ride person, but went on several rides….we blamed it on the new antibodies carousing through my veins from IVIG.

I met many caring health aides and therapists.

Not taking breathing or moving on my own through time and space for granted.

My wife had to cook………..no wait, that would be a negative…sorry!

Well, after a life-time of procrastination, I finally made out my Last Will and Testament.

Learning patience is one thing that has come out of this for me and not stressing the small things. Learning to prioritize and appreciating your family and loved ones. Finding out about inner strength and how I react to adversity. Accepting that I don’t have to do everything perfectly and be superhuman. Taking time to really appreciate the simple things, like a beautiful day or a hug from your child or a delicious meal. Learning how not to take things for granted….like eating, walking, breathing, etc. Being grateful to be alive and living another day…..

In the book THE TEN THINGS TO DO WHEN YOUR LIFE FALLS APART, it says:

“…disasters are all the ways the cosmos has of saying: we’ve been wanting you to do something different. You didn’t get it right the first time – or the first 500 times – so,we’ve provided yet another opportunity, a discount special, for This Life Only, for you to make the changes your soul has been crying out for.
When you are in the midst of mayhem, of course, it doesn’t feel like a process of expansion. It feels more like the changes you’re making are all somehow taking you in the direction of Less – being less, having less, accepting less, whether it’s goodies, status, money, or time. It is actually only by doing something different that you can move yourself through the eye of the storm of your crisis and actually come out with more: more time, tranquility, equanimity, awareness of your purpose, sense of connection, gratitude, peace, hope, love.”

Hope that helps someone. In Reality, I miss my teaching, ushering at the Tampa Bay Performing Arts Center and seeing hundreds of shows for free, hitting dance clubs, meeting new people, etc. Guess I burned the candle at both ends and now all I have is great memories and a wick!! Sorry, Harry, this having more time is for the birds…and squirrels…and watching the grass grow!! I learned my lessons the First time I had GBS…..this second time was uncalled for !!! wink

When I was out of intensive care, and back in a regular room, I had many people come and go in the other bed in my semi-private room. One was a 65 year old lady named Leah who had pulmonary sclerosis. She was not expected to live long. I was off the respirator, but still mostly paralyzed. One day Leah said to me, “You know Susanne, you are lucky. You are lucky because at a young age, you are going to know what is important in life. Most of us don’t find that out until it is too late.” At the time I certainly didn’t feel “lucky”, but I found that what she said was true.

I am home now and not fully recovered after 1 year in a nursing facility, using a walker to get around. Here are some of my positives:
1. Not sharing a room.
2. Being away from the grim atmosphere of this kind of facility with all kinds of pathetic visuals.
3. Not having to eat the dreadful thing they call food.
4. Smoking a cigar, and having an airline size vodka.
5. Being away from people who used to say “it could be worse.” How stupid and insensitive is that? I knew damn well things could be worse, but you don’t say that!
6. Being away from staff and people who said “how are you doin today?” with a broad smile and gone before you could answer.
7. Not being around so called caregivers who did not belong in the job to begin with (nurses and health aides) along with some indifferent doctors.
I had a nurse who refused to reach for something I needed and told me to try harder when I said I could not manage it. She was imitating tough love therapy in her mind. I wish her the worst.
8. Managing boldily functions without being in a diaper.
Finally, I want to applaud those who have found a silver lining to this debilitating illness. I admire you for your attitude. But this is truly something I could have done without.

An interesting topic – – –
The best thing about GBS – well, I knew it before but my husband’s enduring love and care.

The power of prayer – people I didn’t even know prayed for me as I was placed on a number of prayer lists. And people I knew prayed and sent cards.

Everything that Jessicah said.

And after all that’s said and done – meeting all of you. I have gotten so much support knowing I’m not nuts when my feet are ice cubes, my hair is falling out, I cry and sleep way too much, and there is too much noise in our world.

But would I want to do it again? No way – I am a good learner and don’t need to relearn these lessons! Now, I’m going to go and take a nap. 🙂

Mostly, I agree with Hedley. And that’s because it’s getting harder, not easier, and I’m losing more than I’m gaining, and sometimes I think the tide is going out on my life.

Now for the positive things:
1. God has led me to coupons, and freebies; otherwise, I’d be living on an earned income of about three thousand dollars a year, plus my rainy day fund. So I know more than ever that God provides for the sparrow, and does provide for me with the scraps that fall from the manufacturers tables.

2. I finally ditched FirstDoc, and found a better Doc. I wish I could have done that years ago, but 2 + years of medical indifference and undiagnosed, untreated GBS was the final ‘straw’, and then a new Doc finally came along.

3. I have no more illusions about people who are actually hypocrites, so I don’t waste my time trying to win their understanding or affirmation. GBS taught me more about people. And I’m too tired mentally and physically to mull things over in my mind the way I used to; in some ways that’s a blessing.

4. I am no stranger to life’s serious hardships; I can’t handle the pain of GBS very well, or the crippling, because it’s limiting me severely, and I’ve had much loss. However, I’ve come to believe that even if the damage is so severe that I lose everything, God will still receive me in Heaven because of Christ being my Saviour.

I believe that salvation is by grace, and have always been very aware of one’s personal responsibilities in the faith, but I’ve always felt so much inner pressure and fear about failing in my faith. GBS causes damage to the mind, the body, the soul and the spirit, and all the old spiritual patterns are upset and changed. Many factors about illnesses and damaging events are out of our hands, but ‘underneath are the everlasting arms’. I find hope in the gospel teachings about Christ healing the demon-possessed, brain-damaged and others with severe crippling and dire circumstances in their lives. He knows what I still have and what I don’t have, how damaged I am, and I find hope and rest in His love.

5. I have learned again, and this isn’t the first time, that God has given us human beings a very powerful will to survive, to recover and to live. GBS is a condition I would not choose, but life on this earth is full of woe and trouble for human beings. I choose to cope with my share, and do my best to go on.

6. GBS that was caused by pharmaceuticals and/or neurotoxins must be exposed to the public. Therefore, we who suffer in this condition are instruments for the truth in warning others and bringing about change.
In addition, the medical profession gains insight from our condition and response to the various treatments, and this knowledge will improve the chances and care for others in future.

Well said! God holds us in His hands and helps us bear more than we ever thought possible. Thanks for your witness.

[QUOTE=D.U.]Mostly, I agree with Hedley. And that’s because it’s getting harder, not easier, and I’m losing more than I’m gaining, and sometimes I think the tide is going out on my life.

Now for the positive things:
1. God has led me to coupons, and freebies; otherwise, I’d be living on an earned income of about three thousand dollars a year, plus my rainy day fund. So I know more than ever that God provides for the sparrow, and does provide for me with the scraps that fall from the manufacturers tables.

2. I finally ditched FirstDoc, and found a better Doc. I wish I could have done that years ago, but 2 + years of medical indifference and undiagnosed, untreated GBS was the final ‘straw’, and then a new Doc finally came along.

3. I have no more illusions about people who are actually hypocrites, so I don’t waste my time trying to win their understanding or affirmation. GBS taught me more about people. And I’m too tired mentally and physically to mull things over in my mind the way I used to; in some ways that’s a blessing.

4. I am no stranger to life’s serious hardships; I can’t handle the pain of GBS very well, or the crippling, because it’s limiting me severely, and I’ve had much loss. However, I’ve come to believe that even if the damage is so severe that I lose everything, God will still receive me in Heaven because of Christ being my Saviour.

I believe that salvation is by grace, and have always been very aware of one’s personal responsibilities in the faith, but I’ve always felt so much inner pressure and fear about failing in my faith. GBS causes damage to the mind, the body, the soul and the spirit, and all the old spiritual patterns are upset and changed. Many factors about illnesses and damaging events are out of our hands, but ‘underneath are the everlasting arms’. I find hope in the gospel teachings about Christ healing the demon-possessed, brain-damaged and others with severe crippling and dire circumstances in their lives. He knows what I still have and what I don’t have, how damaged I am, and I find hope and rest in His love.

5. I have learned again, and this isn’t the first time, that God has given us human beings a very powerful will to survive, to recover and to live. GBS is a condition I would not choose, but life on this earth is full of woe and trouble for human beings. I choose to cope with my share, and do my best to go on.

6. GBS that was caused by pharmaceuticals and/or neurotoxins must be exposed to the public. Therefore, we who suffer in this condition are instruments for the truth in warning others and bringing about change.
In addition, the medical profession gains insight from our condition and response to the various treatments, and this knowledge will improve the chances and care for others in future.[/QUOTE]

I have had GBS three times. I had a demanding job in 1989 and was glad to get a break and have people take care of me (14 months off work). In 2002 I was in another hard stressful job and was glad to be able to retire. I had planned to work another 3 years due to medical insurance issues but found I could retire without worry about that. I love being retired and doing things I enjoy. The Lord has been good to me and I am so thankful I have the health I do.

I think by far the biggest plus has been the handicap parking passs!!

GBS has taught me to be thankful for everything; including things other people don’t think about twice. It has also taught me that the only “entities” you can depend on are God and yourself. That doesn’t mean that my friends aren’t a great source of help, but sometimes you just don’t want to ask for help or burn/stress anyone else out.

It has also taught me to be a bit patient as I was sorely lacking patience (not quite the virtuous woman I wanted to be). 😮

My goal is to have a positive, mental attitude regardless of how my day is going, how my health is, how my co-workers sometimes annoy the Sam Hill out of me, etc., etc. I’m getting better though, with God’s help and with a lot of assistance from my S/O; He doesn’t allow me to stay down in the dumps too long. 🙂

Take care all