just want someone to talk to
AnonymousMay 21, 2008 at 11:57 am
My name is Brittaney I got GBS on march 6 2008 at the age of 17. I had an atypical onset brought on by three high doses of steriods. My doctors took two days before diagnosing me and when they finally did I went in to respritory arrest. It took a week for the entire paralasiys to set in. After that week i had a G-peg put in. The second week i spent in the hospital was nothing but pain and sleep. Following the second week I recieved a trachiotomy. Then i celebrated my 18 birthday in the ICU, every childs dream right? In the middle of my third week i started to gain slight movement in my fingers. Slowly I got better everyday I could move a little more. I was still on a ventalator and now there was talk of sending me to a rehab center. My final week consisted of working with physical therapy and getting of the ventorlator. It was scary and hard work but I did it. And I didn’t have to go to a facility my parents decided home therapy was best, and it was. After just four days of beign home I was able to stand after six days i could take a few steps. As I told my physical therapist when she came i had prom three weeks and I was not only going to go I was going to walk and dance. I still had my peg tube in as well as my trach tube. I recovered quickly and was able to have both removed before I went to prom. Now I am back to school and walking unassisted, but mentaly i think i am not doing so well. I am afraid of getting sick. I have a hard time sleeping. I have nightmares of going back to the hospital. and most of all I have no one to talk to.My parents have been with me from the very beginning staying with me in the hospital and helping me when I got back home. But two months later I think they are sick of my doctors vists, medications, sick of me and my GBS. I know i should not be upset because I am doing really well but the residual pain I have and the mental unstablity are really starting to get to me…..
Thanks a lot for having a forum like this, it really helps just to get the fears out.
AnonymousMay 21, 2008 at 12:08 pm
Brittany, You sure have been through a lot for an 18 year old, but you sound like a very mature young lady. Having gone through what you did is very tramatic. As you step back into your typical routine everyone will begin to look past all you went through. Unfortunately, it will be difficult for you to forget all you experienced. Know that it is very normal to feel that way. I would guess everyone on this forum is still a little leary of getting sick after years of dealing with the reminders.
Hang in there. My advice would be to let your parents know how worried you still are and that even though you look and seem to feel better, it still upsets you.
Check in here often, you’ll find lots of support.
May 21, 2008 at 1:23 pm
You have been through a lot! I wish I could hug you.
The fears you are having is normal. I still have them myself and I am almost at my 2 year “anniversary”. I didn’t get it as badly as you, but I understand how you feel. I often think my family is tired of the whole thing and the residual effects I am still dealing with. I have to tell my kids I am too tired to play or hang out or take them somewhere, I tell my husband I am afraid or feeling poorly or I cant do something myself. They dont get tired of it, they just feel helpless that they cant make it go away. I often worry about being a burden, but my family has never said I am or made me feel that way. It is just something in my own mind. As for the fear of getting sick, well once I started feeling better, I over did it. I cleaned the entire house with bleach and lysol! I had no business working so hard and should have been resting and recovering, but it was an overwhelming obsession I couldnt deny. I still freak out if I get a cold or if someone in the house gets the flu. BUT, I dont freak out as badly as I used to and I dont worry as much as I did. Yes, it is still on my mind, but I handle it better. So it does get better with time. You will probably go thru highs and lows of this fear…if you get a new pain or tingle or sensation, if someone close to you is sick, etc. I assume what we go thru mentally is Post Traumatic Stress Disorder. And for good reason! GBS changes everything in your life.
Think of how far you have come in such a short period of time. Think of the major accomplishments you have achieved! You went to prom! You made it thru a very scary and very traumatic event in your life. You are much stronger than you realize, take pride in that and comfort. You will continue to recover and feel better…some days better than others…but you will and are able to make even bigger strides.
This forum is a great place to vent, ask questions, find info. We are here for ya! Welcome and big hugs!
AnonymousMay 21, 2008 at 1:26 pm
Hi Brittany: Welcome to the forum. It is very normal to have nightmares and anxieties after GBS as it is a very traumatic experience. My only advice to you is to be up front with your parents and even if you suspect they are sick of it all let them know you still need help and support. They may not even realize how you are feeling. Also you can write to the forum here and get support any time free of charge:D Jeff
AnonymousMay 21, 2008 at 2:50 pm
Brittaney ~ welcome to our big, wonderful, wackey family 😀 I am truly sorry that you needed to find us but you will bring a breath of youthful fresh air to our bunch. And we want to be of help to you. Yup, we can understand like no one else what you feel so chat away and we’ll be there for you!
AnonymousMay 21, 2008 at 3:40 pm
I am sorry you had to go through all of this. Having nightmares is real common after GBS. I had nightmares about getting buried in a building collapse and not being able to move. It took several months for the nightmares to go away. They went away when I realized that I wasn’t dealing with the emotional aspects and mental trauma of losing control of your body.
You will have a natural reaction of moving away from a fearful or painful situation. I would suggest that instead of moving away from GBS and trying not to think about it, that you may be better off leaning into the pain and trauma.
Finally, you have been through a tremendous psychic trauma. GBS messes up adults who have much more experience dealing with adversity than your normal 18 year old should. Perhaps you may want to talk to a mental health professional who is skilled in dealing with post-traumatic stress. There may be counseling services available through your insurance company or through your hospital. Your parents may be the best people to help you with this.
So Brittaney, please take special care of yourself for the next few months. You are not going crazy, your mind is just using defense mechanisms to protect itself. This is a very natural response and most of us have been through the same thing. If you deal with this, you will be back to normal in a short time.
Oh yeah, and how did the prom go?
AnonymousMay 21, 2008 at 5:59 pm
I am so glad you found the forum, and its wonderful that you are here able to speak about what you are going through. I had a very similar expeirence around the same age as you, I was 18 and had my 19th birthday in hospital. I probably took me about 2 weeks to get to total paralysis, and had a trach put in after a week on the vent. Vented for 6 weeks and then time in hospital learning to do walking etc, and months of outside rehab. I was very lucky that my parents understood and was with me all the way.
I think you are doing a wonderful thing in working through your trauma now, as it is very important to understand and deal with those emotions. I tried to bury mine for about 17 years and it has only caused more grief in the end. It is understandable that you would be scared and as I said, important for you to go through those emotions. It is also so important that you do not ignore those residual symptoms you feel, and the mental upheaval you feel just to appease your parents and/or friends. This trauma is something you will remember all your life, and helping yourself and looking afteryourself is top priority.
AnonymousMay 21, 2008 at 8:34 pm
When I first go GBS, I had a fairly mild case. It was brought on by one year of marriage to the wrong person. I moved back home and my mom came down with arthritis in her hands and fluid in her lungs because of worrying about me. Perhaps your parents are worried and do not know how to act around you? Just a thought.
WHen I got it the second time, it was again stress- the death of my mom and moving. The odds of you getting it a second time are slim. It took me 20 years to get it again. ANd when I did, I had overloaded my system.
It is very easy for people to tell you not to worry. But you probably feel out of control. Many of us feel that GBS hit when we had overloaded our systems. So you can take your control back by eating healthy, getting lots of rest and being happy.
I am going to send you a private message. Look for it at the top right corner of your screen where it says WELCOME.
AnonymousMay 21, 2008 at 11:24 pm
Hey kid..welcome to the family, as dysfunctional as it may be..:D It’s ok to be scared and unfortunately most of the things you describe are pretty normal for us GBS’ers, however, you do need people you can talk to. If you let someone know where you are located we will connect you with a liaison in your area. I am from Ohio but there are people all over the world. And one thing we are good at is talking..Take care sweetie. You’ll have to post us a prom picture..ours was saturday night and the kids looked beautiful.
AnonymousMay 22, 2008 at 3:33 pm
I read and re-read your post multiple times. I want to welcome you to the boards and state that many of the people are WONDERFUL listeners, anytime you need to vent.
I first was dx’ed with GBS when I was 18…right out of High School and in my freshmen year of college. Much the same way as yourself – VERY QUICK ONSET – less than 24 hours after showing symptoms I was on a vent – I remember thinking exactly what you mentioned in your post. Scared. Alone.
Things turn around and I’m released after 60+ days in the hospital. I remember thinking that other people (my folks) were tired and sick of listening to me afterwards. I made a great recovery then (went back to competing in athletics). I was scared and had nightmares about the whole incident. Couldn’t sleep…..would think about it ALL THE TIME….much like others. It affected my mood and I struggled with depression on and off again.
Fast-Foward 13 years later….I was getting my family and neighbors through a HORRIBLE ice storm (no power for 9+ days) and the day we get power restored I notice my feet going numb and I couldn’t swallow – I’m again dx’ed with GBS. I have a little more time, about 40 hours till I’m put back on the vent. I stayed on the vent for almost 3 weeks. After another 60+ days in the hospital and re-hab, I’m released without the use of my left eye – based on my eyelid not being able to close.
Now a year and a half later – and without going into any more detail, I’m recovering, and working hard to build my girls a house.
I don’t know why you got GBS, just like I don’t know why anyone on this forum got GBS or CIDP, but you did. I have realized (and it took me twice dealing with this) that there is so much to enjoy in life.
That isn’t much consolation for you now, I realize. But keep in mind that people here know what you’re going through. They listen. They offer support and experiences to help you deal with whatever you’re going through.
Hang in there.
AnonymousMay 22, 2008 at 10:23 pm
I just want to say HANG IN THERE! its been 4 years since i had GBS and even though i have almost fully recovered, just the thought of those days sends shivers down my spine. What you are going through doesn’t at all surprise me and b’lve me, you will get over with it. Just have faith and things would be better soon. Keep on writing in here. Its wonderful to have so people who care about you.
AnonymousMay 23, 2008 at 1:05 am
Wow thank you so much for all the responses. I don’t know what to say. It really helps to read what everyone else has to say. I really appreciate it. it makes me realizes that i am not the only one in the world who had this horrible syndrome. Several of my doctors,i only have about 4 :p, believe that i have PTSD which is causing my mood swings, insomnia and weight problems. So they recomended I see some one so I have an appointment next week with a Psychitrist or psychologist I don’t remember which one it is. XD. Hopefully they will be able to help. Also I graduate form my high school on June 6th and although I will be in my wheel chair for part of it I will be walking across the stage with my class mates, something I was worried I will not get to do because of my GBS. I have to take everything day by day some are better than others. But It is really good to know that I can come on to the forum and know that I am not alone. So as per request I am attaching a picture from my prom. I went with my wonderful boyfriend Jesse who has been with me since before and through my GBS and I love very much. I am super skinny in this picture I must say. I think I was about 109 and now I am trying really hard to gain more weight. I’m up to 112 now. :]
So once again thank you for all of your kind messages they mean a lot to me.
AnonymousMay 23, 2008 at 6:00 am
What a beautiful photo!
I just wanted to say i know what you mean about feeling like everyone has had enough of your GBS. If your family is anything like mine, i think they go through so much stress when things are at their worst and the future is so uncertain, that when you fianlly come home and seem to be improving, they just want to put it all behind them. What they dont understand is that going through GBS is a profound experience and it can continue to dominate our lives and out thoughts long after we are seemingly on the road to recovery. I suppose if you look at it from an outsiders point of view, why would you want to keep reliving such a horrid experience. I know i felt a need to talk about it for a long time after people thought i was “normal”. As someone else said it is a way of affirming the experience. Becasue i was in a coma and suffered ICU psychosis, i needed to fill in a lot of blanks. I would ask my partner about bits and pieces that i rememebred and he would actually get angry at me for talking about it. At least you know you can always come here and vent or ask any questions!
Good luck with your graduation, you have come so far be proud of what you have achieved.
AnonymousMay 23, 2008 at 8:51 am
I was in an acute rehab unit that had 2 on staff phychologists and having one visit me several times a week helped me deal with my GBS and hospital experiences. It is good that you have appointment next week to talk to someone.
Your prom picture was beautiful.
Congratulations on your graduation.
AnonymousMay 23, 2008 at 11:31 am
Hi Brittianey my name is Brenda and I was diagnosed with gbs oct 12 2007 and it was upgraded to CIDP on may 5 2008, I understand about the getting sick again I have been told by my doctor that I will have a relapse at some time and it scares me to death but as like you I went into hospital and then lost all my body functions was tracked and in icu was lost 3 times and when I left the hospital on Jan 14 2008 was able to walk and talk again its been the fight of my life but you cant be scared because it is a gift that you have recieved and live life to the fullest and take everyday as that, you well get better and the pain well stop and the nightmares are your bodys way of remembering the trauma you went through but you made it and life is GOOD so keep dancing and laugh the best is yet to come
AnonymousMay 24, 2008 at 12:14 pm
I am almost 25 years out from having GBS and trust me, there is life after this illness! It does change us of course, as does any traumatic event, but I have raised four wonderful kids and have 4 wonderful grankids that I am able to play with, hug and enjoy. Be patient with yourself and this illness. Healing of the nerves takes time. You will see gradual improvement and promise me you won’t overdo it or push yourself as this in and of itself can set you back.
Take care and keep us posted. By the way, you looked gorgeous in your picture. Who knows, maybe you will do more than just walk across the stage at your grad!
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