Detour signs are for wimps...
At times we may feel that we have no where to go. We feel that the road has ended and we cannot turn around to find our way back. We are lost and just want to quit. We need to find a way to pick ourselves up, turn around and find the way. The road doesn't end; it's all an illusion. We need to find our inner-selves and make that realization that the road continues just ahead. The road never ends.
Listen when they say "there is light at the end of the tunnel"...
I hated when I was told "there IS light at the end of the tunnel, Emily!" I was laying in the ICU paralyzed, could only communicate with my eyes and neck, and had 7 machines constantly beeping around me. Newsflash, everyone was right. We, as GBS patients are lucky in one way-- no matter how bad we get, the outcome is always better than the way we felt in that hospital bed. We WILL recover. Don't EVER feel alone because you, too, shall meet the light at the end of the tunnel. Your world will brighten, I promise.
Appreciate them; they saved your life.
We dislike them when they make us do performance tests throughout the day. We dislike it when they come in to bathe us; let's face it, it HURTS when they lift and press all over our bodies. We dislike it when they say it's time to change the dressing on our port or when they have to swap out our trach tubes. We dislike it when the x-ray techs come in our room with a huge machine and tell us to put our arm above our head and lay as flat as we can-- we're paralyzed, remember? We cringe when the physical therapist comes in the door and says, "Ready for a big day?!"
Without performance tests, they wouldn't know whether or not to give us another round of plasma. Without getting bathed, we would wither away and have more problems then we already have. If we didn't get our dressings changed, we would have horrible infections. If our trach tubes weren't changed, we wouldn't be able to breathe even with the breathing machine. If our doctors didn't order the x-rays to see if there are improvements, we would be in the ICU forever. X ray techs don't always know how painful GBS is to the patient. When the physical, occupational, speech, or swallow therapist comes through the door don't get scared-- don't get upset. Without them we would never be able to walk, feel, talk, or eat again on a day-to-day basis. Without our Doctors, Nurses, Therapists & Staff, we wouldn't be where we are today. Appreciate them. They turn our lives around.
Without performance tests, they wouldn't know whether or not to give us another round of plasma. Without getting bathed, we would wither away and have more problems then we already have. If we didn't get our dressings changed, we would have horrible infections. If our trach tubes weren't changed, we wouldn't be able to breathe even with the breathing machine. If our doctors didn't order the x-rays to see if there are improvements, we would be in the ICU forever. X ray techs don't always know how painful GBS is to the patient. When the physical, occupational, speech, or swallow therapist comes through the door don't get scared-- don't get upset. Without them we would never be able to walk, feel, talk, or eat again on a day-to-day basis. Without our Doctors, Nurses, Therapists & Staff, we wouldn't be where we are today. Appreciate them. They turn our lives around.
The power of prayer...
Do you believe in God? Some of us may not be as religious as others, or not at all; however, it has a strong effect on many. When you are at your lowest, you probably feel you have nothing more to rely on. You feel it's time to give up-- but don't. Look up and realize that the power of prayer is the strongest way of communicating with not only ourselves, but Him too. I have never been over-the-top religious, but I do believe in God. I believe He is the Divine Healer.
Communication is key.
It is one of my many goals to articulate just how important communication is, not only between the doctors and nurses, but with the patient and their family as well. Patients: DO NOT be afraid to tell your nursing staff how you would like your day to go. Let me explain.
If you want to be bathed in the morning because you know you usually have guests in the afternoon, tell them. Baths are usually left for the graveyard shift because there's not much going on. If you'd like to have therapy in the morning instead of afternoon because you know you have more energy in the mornings, tell them. There's plenty of therapists to go around.
One of biggest issues I found while being a patient was the lack of knowledge that nurses had. Training needs to be done so that they know what a GBS patient goes through. I had issues with nursing staff coming in my room and never working with me before. They'd be in my room to either bathe me (CNA's), to help turn me, or help with other needs. Most of these nurses (or CNA's) had no idea what I was going through. This is where the communication comes into play. There needs to be communication between the patient's main nurse and the doctors and other staff that may be working with the patient. I had anxiety issues whenever a new face came into my room. I had a fear that they were going to grab me like a normal person would-- and they did. COMMUNICATION IS KEY!
If you want to be bathed in the morning because you know you usually have guests in the afternoon, tell them. Baths are usually left for the graveyard shift because there's not much going on. If you'd like to have therapy in the morning instead of afternoon because you know you have more energy in the mornings, tell them. There's plenty of therapists to go around.
One of biggest issues I found while being a patient was the lack of knowledge that nurses had. Training needs to be done so that they know what a GBS patient goes through. I had issues with nursing staff coming in my room and never working with me before. They'd be in my room to either bathe me (CNA's), to help turn me, or help with other needs. Most of these nurses (or CNA's) had no idea what I was going through. This is where the communication comes into play. There needs to be communication between the patient's main nurse and the doctors and other staff that may be working with the patient. I had anxiety issues whenever a new face came into my room. I had a fear that they were going to grab me like a normal person would-- and they did. COMMUNICATION IS KEY!
Let people stare-- they have no idea what we went through..
Just because the car has a handicap tag, you walk into the store with a walker, or you have no smile because your facial nerves were affected, don't be self-conscious. Yes, I know.. it's normal to feel that way when your life has been interrupted by such a nasty disease, however, no one will ever know the battle we went through. At least we're out in public, right? We all could still be in the ICU... it's ok. I didn't have a smile until Father's Day, and even then it was a very, very small smile-- my teeth barely showed. While all of this went through my mind everyday, I had to continually remind myself that I was so lucky to have started the recovery process. Don't let the ignorant people get to you-- they aren't worth it. If they only knew.
Write, write, write
If I could give any advice, I would say write about your experience from day one. I was unable to use my hands until I got to inpatient rehab, however, my sister started the CaringBridge website while I was in the ICU. Once I started writing again, I started to do the writing. I had my 24th birthday while in the ICU and my neuro team of doctors gave me a journal for my birthday. As soon as my occupational therapist gave me a writing aide, I wrote my thoughts down constantly. No one knows what we go through, especially being a ventilator patient. Imagine not talking for 45 days. That was me. I had a letter board for communication, but when you can't move, the last thing you want to do is make someone figure out what you're trying to say. Not fun.
Write, write, write! Don't let that get away from you-- this story will be with you the rest of your life! Many will want to hear about it.
Write, write, write! Don't let that get away from you-- this story will be with you the rest of your life! Many will want to hear about it.
BE CAREFUL IN THE WINTER!
It's never fun for anyone to slip and fall on the ice, but it's especially unamusing for us patients to have to get back up on the ice. When we are careful on ice, we tend to lay back in our step-- making us feel more safe. However, keeping your weight back as you tip-toe on the ice will actually throw your weight off. When you slip on that black patch of ice and your weight is already back, there's no way to catch yourself properly. Walk normal, but slow down. When we try and catch our fall, we usually hurt something else in the meatime. We don't need that! Be careful & watch for that ice!