Saturday, March 24, 2012

Things GBS Taught Me

Just listing off some things GBS taught me. These are just things I kept in mind while at the hospital and rehab... I can be kind of agressive. Hehehe. I entered the hospital on the night of May 18th 2009 for Guillain Barre Syndrome. I wrote this about a year after recovery though I forgot to ever post it on the blog. Doing so now to share it with peeps I have met on Twitter. It is also something that I had forgotten about and going back through and reading it sometimes gives me a little boost in determination to keep driving forward and pushing myself even now.

Sometimes you have to slow life down whether you like it or not.

Sometimes you get dropped, so you just have to hope there are enough people there to help pick you up.

You really can have a moment of clarity during pain and come to the realization that the inhuman sounds you hear are coming from you. (Always read about it in books, but never experienced it until the one time I got dropped and landed with my knees bent for the first time in 2 months...)

Everyone, at some point in their life, has to depend on someone else. Might be earlier or later but it will happen. (I had a hard time with this... I hate having to depend on others...)

You cannot lose your determination and drive.

Modesty has no value in a hospital. :P

Ketchup packets suck. (Stupid fingers...)

Syrup packets suck. (First meal at rehab was waffles with syrup in a packet and butter in a packet, milk in a carton, orange juice in box, utinsles in plastic wrap, fruit in a styrofoam cup with a plastic lid on it and 2 bacon strips. The nurse dropped it off and went on to deliver to more rooms. Heheh, I ate my bacon, which I don't really like, and then cried because I couldn't open anything else because I didn't have the strength. I was so angry and frustrated. I was too damn stubborn to ask for help though but eventually she came back and opened everything for me. I learned then for sure I had to be willing to depend on people and needed to leave my pride at the door.)

Milk cartons suck too. :P

Leave your pride at the door.

Morphine can provide the best feeling at the time and the worst feeling after. I'm always going to crave that manufactured happiness in the back of my mind even though I know it holds nothing for me.

Appreciate every accomplishment made every day.

Small wins outweigh the big losses. They have to.

Never lose focus of the big goal.

Books are your friend when your can't move anything but your arms.

If you even think you have to pee, call for a nurse, it will probably take 5-15 minutes for them to get there and move you to the bedside commode or bring a bedpan. -.- I hate bedpans.

You know your sister loves you when she shaves your legs for you.

It's ok to be afraid and frustrated; use it as fuel for your determination. You will move forward.

While recovering, your reference point of "how you used to be..." should be your worst point in your health. You are fighting an uphill battle and can no longer reference life before GBS in regard to your body.

The fear/anticipation of the unknown and waiting is one of the worst parts of GBS.

GBS also stands for "Getting Better Slowly." (Hehehe, someone on one of the GBS pages mentioned that and it has stayed with me and makes me smile when I think of it...)

When at a neurorehab keep in mind that most of those people don't have a chance of as much recovery as you do. They are learning to cope with their status and how to function independently as they are. Be grateful you have a chance to improve beyond where you stand right now.

Set a goal every day. Wiggle a toe, lift a book, hold a cup of water or stand for 5 seconds. It doesn't matter what, just keep a long term and a short term goals in mind.

Push yourself but be mindful of your limits. Extreme fatigue does you no good.

Find ways to work your hobbies into your recovery.

Never let go of what you love.

Keep a diary of progress if you can. If you can't, get a family member or friend to do it. It helps keep perspective of how far you have come.

Cherish the time you get to spend away from rehab on a day pass.

Stay on top of your rehabilitation. Do not lose ground because you are too depressed to get out of bed. Just do it.

You may feel you are an inconvenience now but if people didn't want to help, they wouldn't. So be grateful and understand their love and patience for you. You may get frustrated with your status but never take it out on them; they are there to help because they love you.

Some people may not understand why it takes so long for you to hit the next goal. Ignore them and focus on your own speed and goals.

It is ok to cry and break down but use it as a chance to gather your strength and resolve and become stronger once you find your calm.

Come to understand that today might be the best you get, and be ok with that but don't stop trying to drive forward.

Don't sit around and wait for someone to make your situation better. Drive yourself forward.

Keep an eye on the medicine they give you and know the names. Nurses can make mistakes just like anyone else.

Think of the medical beeping like a really slow techno song.

Notice other people around you. GBS is your ordeal but others are suffering too. Offer compassion and understanding.

Aside from the annoying aspects of getting to the shower, SHOWER DAYS ARE AWESOME!

The first real shower, not a bed bath, you get after being in the hospital is the MOST Awesome!

Take a moment to enjoy being waited on hand and foot, just, ya know... ignore all the other unpleasant GBS stuffs for a few seconds. :p

Enjoy having someone scrub your back. You were what, 3 or 4 the last time someone did that for you?

Car transfers suck the first few times, but they get better and the pay off of going out and about is worth it.

Do a happy dance when you acheive something. Wiggling a head or finger counts. :)

Take pictures during the timeline of things. You might appreciate them later...

You need to rest to recover. Make sure you get plenty.

Eat correctly after you leave the rehab. Don't just go home and eat chips and candy. Try to make balanced meals like the rehab had. (Plus they are gonna taste better than the rehab and hospital food!)

Do indulge yourself occasionally. Keep yourself happy.

Cherish at least one good thing in every situation. It's there, you just might have to dig to find it.

Appreciate when you can pee without a catheter.

Tuck your chin when you swallow. (Hehehe... Thanks Jo!)

Practice writing when you can.

Never give up. Ever.

Look for support groups. They are out there whether it be online or in person or even run through hospitals and rehabs.

If you have to get an eye patch, enjoy being a pirate! Yarg!

Apply pressure after the Heparin shots to decrease bruising.

Learn the nurse's and nurse's aide's names. They are your buddies.

Push yourself to stretch your muscles when you are able. It hurts but will be worth it.

Get to know your neighbors and who you are sharing the bathroom with. Take joy in their progress and use it to fuel your determination.

Smile, wave and say hi to people in the hall.

Don't dwell on "what if's." Your situation is what it is and it is your job to focus on real recovery not what it could have been.

Have walker/wheelchair races.

Join the GBS/CIDP Foundation.

If it is good weather, go for a push/stroll through the courtyard. The sun can feel good for a few moments.

Practice, practice, practice what you are learning in your rehab schedule.

When you are in real pain you can't even form words. "Fu" and "Sh" don't exist and you're reduced to vowels.


  1. Well all I can say is its great to have a determined sister such as you and not only are these are words for GBS recovery but they are words for anyone to live by.
    Great to have you back and great to see you spreading the word so other people can find their way back too.

  2. These are really helpful tips! I'm glad you survived. Now it's my time to apply these tips while recovering :)

  3. I found this post while searching for information about guillan barre syndrome. My son is currently in the hospital for over a month with this syndrome. I've printed this post out for him to give him hope. Your attitude is fabulous. I'm impressed. Thank you for this post.

    1. Many thanks and well wishes for your son! The hardest part is keeping the determination to drive forward. Stay strong, keep him up and continue to improve! There are many Facebook groups that are wonderful for GBS patients to connect with. I am going to make a list of them soon but for right now, if ya'll just search on Facebook for GBS Survivors several groups should pop up. Good luck in recovery and drive forward every day!

  4. Perhaps you should rename this post the 73 or so commandments of GBS.. .:-} I can relate so well. Do you remember the first time you had ice cream again...real showers really do rock! I laughed about the leg shaving because I am for all intensive purposes bald. But I do have a little peach fuzz. My bother in-laws girl friend was kind enough to shave my head for me while I was in rehab but I talked her into leaving some in the middle. I don't know if anyone else noticed but I knew I had a mo-hawk! Being able to stand and pee for the first time help to restore some of the pride I lost that very first time some had to wipe my butt...Thanks for sharing and providing a forum for me to share. Let's keep driving forward!

    1. Lol, mmm, they used to freeze Ensure and serve it like a milk shake. :3 yummy! lol, awesome on the mohawk! Heheh, yes, being able to go to the bathroom on your own is such an awesome level up. :D

    2. What especially caught my eye was the part about morphine, bringing to mind the night the substitute nurse gave injected a stronger than usual dose. The pain went away and I almost did.

  5. Wow these are great some laughing and crying while reading through these....a sense of humour is key!! I live in northern ireland and am just over 2 and a half years since initial GBS diagnosis. Some recovery still to come but im doing pretty fact i am due my 2nd child any day now- proof there is life after GBS