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. It is 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. http://www.gbs-cidp.org/

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.

Many thanks!

What a great post! This wisdom can be applied to just about anyone for anything! Though I am a granddaughter of a GBS sufferer, I do have PsA and can totally relate to all of this. A favorite joke at our site is the 'hand to hand combat with a ziplock bag'!

Lisa, you surely have kept your level head and good humor through all of this! You are an inspiration!

Be well, be happy!

SK

Thanks for reading! I hope your family member has a smooth recovery! :D

The dreaded ketchup packets. I called my hands lobster claws because of their shape. I was able to clutch the packet and I'd yank the packet open with my teeth. I enjoyed reading this. It's been a little over a year now since I was admitted to the hospital. I have to remind myself daily how far I have come because how far I need to go can be so daunting.

Dear Amanda,

Absolutely, we must always be clear about how far we have come! I have other Autoimmune diseases, and we talk about the hand to hand combat with the zip lock bags, ketchup packets, and the tinest of things. Keep looking up and ahead, as our dear friend JC says, "stay strong"!

Wishing you WELL,

SK