fustrated and depressed
AnonymousMay 10, 2007 at 12:47 pm
hi all i am new to the site as of today i was diagnosed with GBS in march of 2006 i am 24yrs old i have heard on the site from many people just didnt want to join in reality i thought i could face this all on my own i do have my family that want to help but it just makes me more fustrated when they try even though i know that there isnt much i can do on my own and i guess what makes matters worse is for the last year i keep my feeling about what is going on with me to myself, i am just so tired of not being able to walk more than 10-20feet or being in so much pain or just doing normal daily activities on my own.
AnonymousMay 10, 2007 at 1:22 pm
hang in there!! there are many people here that are going or have gone through the same things you are going through and we are here to help if we can and listen. we will help you as much as possible. you can get through this is a situation where you need to listen to your body and remeber that gbs stand for getting better slowly..
AnonymousMay 10, 2007 at 1:49 pm
Welcome, glad you joined.
So many of us feel the way you do! Hopefully you will gain some insight and lots of support here. I was diagnosed at age 18 and was 19 when I left hospital, for 18 years I didnt want to talk about what had happened, but now I talk on the forum and to patients everyday.
Tell us a little more about yourself i.e. are you doing Physical Therapy and did you have IVIg or plasmapharesis …… are you on any meds etc.
Look forward to reading your posts.
AnonymousMay 10, 2007 at 2:06 pm
my symptoms started on the 8th of march 2006 by the 13th i couldnt walk at all it took about two days for the doctors to figure out what was wrong it only effected from my feet to my belly button and weakness in my arms and hands they gave me the IVIG treatment and put me in a different hospital for PT in all i was in the hospital for 3 1/2 months i am still in PT 3 times a week most of the time i dont make it to the appointment because of my pain i am on a lot of meds neurontin, percocet, morphine, baclofen, valium and on some nights i have to take zanaflex with baclofen for spasms up to this point i have pain in my legs from waist to knees and in my arms from knees down i still dont have feeling just numbness
May 10, 2007 at 4:07 pm
Hi Shen, when you are frustrated and sad, this is the place to go. The people on this web sight are so knowledgeable and can give you insight that no other doctor could. I hope you continue with your recovery and will be waiting for the post that says you walked 20 yards! Dawn Kevies mom 😮
AnonymousMay 10, 2007 at 6:22 pm
Hi, I got gbs nov 2006, your 24 years old your age is in your favor. I was completly paralized could not move anything even my eyes. I was traced, nuro doctors told my wife I would not make it I was in a coma for 4 weeks, I was in the hospital for 3 months. When I got home I was in wheelchair then walker and then cane. Now I can walk without any help, I wont run the marathon but can walk 3 or 4 city blocks, I take 2400 neruontin a day and thats it, I have very little pain still have tingling in my hands, I feel great the doctors cant belive Im alive and walking. Your going to be OK dont give up try to keep a positive attitude. This site is a major help full of people with knowledge and wisdom they have been a great help to me when I was frutrated and depressed. Oh yeah im 73 years old. Keep the faith. gg
AnonymousMay 10, 2007 at 7:02 pm
Keep your chin up. This a great site to vent your problems. Everyone understands and don’t feel sorry for you, they just support you. Ali, your have such a cute picture on your replies that I can’t help but smile when I see it. It really makes my days go better.
GBS/MF – 1987
AnonymousMay 14, 2007 at 8:48 pm
Sorry to hear you are feeling so frustrated and down right now. It must be especially frustrating for you since you are so young, and have only recently started being independant as adult. Having to go back to being dependant again must be especially hard for you.I’m sure your realize how lucky you are to have family who is supportive – you just wish it wasn’t necessary!
Hang in there, you can come here anytime to vent, and know that the people here understand.
Best wishes on a good recovery.
AnonymousMay 14, 2007 at 9:54 pm
You might want to try keeping a Journal…it can be just a few words on a calendar or a page for each day. Set a format for the pages so it shows you the way you feel, the things you accomplished that day and how they effected you that day and the next day. Try to make sure you do what exercises you can even if they are just stretching and range of motion for the bad days. Make it things you enjoy that will make it more interesting. A few posts on what you might do as a new hobby or places you want to see either by in a video or surf on the www or travel to and what you expect to be able to do when you arrive. Paste some interesting photos you find in magazines on topics you enjoy. Make your pages intersting and a collection of things you like, how you feel and what the weather was like. Who you talked with and who visited. Take time to ask the Doctor if they can check with your PT and OT to come to the house a few times a week. They can slowly move you thru some exercise that may releave or release some of the discomfort by massage or Yoga or other treatments. Keep an open mind and ask them what options are available. Some have turned to other treatments like accupuncture and meditation. There is alot of unturned stones out there to help. Don’t give up! Always work toward a step forward….just listen to your body and get better slowly! Do they have water therapy available? On those bad days that really helped me to feel some freedom from those bad days. It lifted alot of weight and fear from my mind. If I fell it did not hurt and cause more pain it actually made my organs feel like they were floating and not laying against each other causing pain. The exercise pool was 84 and the rehab pool was 94 and just that small difference in temp made such a great difference! Worth a try! A few weeks or months from now you go back and read that Journal you will see some changes that took awhile to show you a slow progress!
AnonymousMay 15, 2007 at 7:58 am
Good morning Shen.
I came down with GBS in Jan. I was blessed as my feet were only attacked. I have gone from a walker to a cane and now walking.Please go to therpy as much as you can. That is a blessing in helping healing. Never forget you are slowley healing each day. Some days with me I feel I am going backwards. Keep your thinking postive as much as you can and turn it over to God totally. I am still haveing pain in my back and today going to have a deep talk with my doctor. Every morning look for a change in your body. something that has improved. Please do not hold in your anger and frustrations. let them out. this removes stress and helps your healing. Remember dump your pain and hurt here. We I feel know more than most doctors do about GBS. and above all you are slowley getting better each day, have faith. We are and will always be here for you. Your friend Steve
AnonymousMay 15, 2007 at 5:36 pm
Vent all you want. let it out.I just got back from seeing my Dr and he said I am still carrying stress and tension from over 4 months ago. He changed my meds so hopefully this will work.You are right one day at a time. and at the end of a week look back at your week and you will be suprised at some of the good things you were not aware of. One of the problems I still have is getting angery at myself. I get on the feel sorry for me trips. My doctor told me I was still accepting I have GBS. he said I was stressed and had panic attacks and and basicley I was miserable. Every day I turn myself over to God the best I can. I tell him to use me and do as he wishes with me. It works and you do not have to be part of any religion to do this. You are going to make it because you have the will to fight. and think of the day you will walk and be doing things again. one thing Never forget is where you have been as every day new ones are finding out about what we have and starting treatment. Also give thanks that yours & mine was not as bad as so many have it. We have alot to be thankful for and are blessed.may Gods blessings and healing powers be with you Your friend Steve
May 15, 2007 at 6:00 pm
Hi Terrance, I agree, everything changes in a day. Even after diagnosis, things change on a daily basis. One day my son will be doing good, and the next, something changes! We both have started to learn to deal with the daily changes. I must add though, that sometimes the changes are good. We are learning very slowly to adjust to the new Kevin. Because he is young, it is hard for him to realize his new limitations, but he is learning. Be sure to stop when you are tired, in fact, don’t wait till you get tired, stop before, we have learned the hard way that pushing yourself hurts, not helps! Don’t set yourself back by pushing too hard! Try to stay strong! It is hard, but it is possible. Good luck! Hey, with the impending summer months, it’s a perfect time to take it easy on the Jersey shore and work on your tan! Be strong and try to find someone in your family you can talk to! Take the initiative, print them out some literature, have them read it! I am sure you can get your mom to understand, or maybe a close friend. If you ever want to talk, e-mail me your number and I will call you if you like! I am not trying to pacify you, but it will get easier, it just takes finding the right person to talk to and the right doctor to help you! Best wishes, Dawn Kevies mom!:o
AnonymousMay 16, 2007 at 12:34 am
Welcome to the site. I’m newish to the site myself and I’ve found the info and support offered here invaluable and it’s a great place for support so come often and vent as much as you like.
This is definitely a condition that when recovering has no time limits. You’ve just got to take each day as it comes, try and be as positive as you can. I encourage you to try and keep up with your physio (even though the pain is getting to you) as this all contributes to your recovery in the long term.
I’m not as young as you, but I’m 35, was very fit and active when I got attacked by GBS and I was ended up completely paralysed from head to toe, couldn’t even blink, in ICU on ventilator for 21/2 mths. The docs thought I was not going to make any kind of significant recovery. I spent another 2 mths in rehab learning do everything over again. It’s just over a year now since I was admitted to hosp and I’m walking, driving, looking after my little girl and running my house. I’m not the same as I was prior to having this, I would consider myself about 85% recovered but that’s better than where I was. I have residual damage to my feet and I get fatigued, but I just rest more nowadays and pace myself. I’ve briefly shared my story so you can see that you do recover, it just takes time and hard work and determination. Be strong and take care 🙂
AnonymousMay 17, 2007 at 9:46 pm
Hi. I am the most fortunate person I know. When I first got GBS it did not even enter my head that i would not get better.
I remember, after leaving hospital, of getting scared witless when something strange occurred, like – being unable to hold a conversation, getting so tired suddenly that I couldn’t lift my head off the table where it had suddenly rested. I thought that was quite funny really. It wasn’t what was happening that scared me, it was other people’s reactions – they didn’t think it was funny and that made me scared as to what was going on.
I remember being tickled pink when I managed to wash my face for myself – I thought I was brilliant, and thought my husband would agree but apparently he didn’t – I think he and others thought I was clumsy.
Looking back, I know I was doing great and for GBS, I really was. But then I began to allow myself to be measured against someone else’s yardstick.
So before you feel bad about not measuring up to the (perceived) yardsticks of others your age. ask yourself – just how well do they measure up to yours?
Okay, the above might be a load of clap-trap to you. It might actually in fact be a load of clap-trap, I don’t know. It’s gone 1 am with me, I am posting what is in my head.
The last thing (yippee! says you!) – it’s a good thing to work on positive thinking, it really is. But sometimes it may suck and when that happens, let it be (I think you have to come to a point where you CAN let it be). Just like with anyone, some days are real downers. Dealing with them I think is a matter of accepting that these down days happen and they are not the end.
I can only guess at what it is like to get GBS at your age. I was 36 and I’m now 50. Yeah alright – older female talking to young guy – I get the picture.
You must be logged in to reply to this topic.