I’m new and feeling lost
AnonymousOctober 5, 2006 at 9:39 am
I was diagnosed four weeks ago with a “mild” case of GBS, my upper chest was not affected thank God. I was given the IVIG treatments of which I responded to immediately. However, since I am able to stand and walk unaided for short intervals, they allowed me to go home to recuperate after a week in rehab. As I am sure most of you have had to deal with, I am going bonkers not knowing a time frame for recovery. Everyone means well, I know, but the daily questions of how are you feeling & feeling any better? are getting to me. I feel like I’m supposed to give a daily progress report on how well I can move my feet, etc. Considering I feel fine when I’m not moving, I can’t get myself to accept that I’m going to be down for the count for awhile, either. Any advice is appreciated.
AnonymousOctober 5, 2006 at 10:14 am
Welcome to our little corner of the world. Yes, it is frustrating and will continue to be for a while. Time frame??? Good question….it is different for each of us. I was dx about a 1 1/2 years ago with a mild case as well. I went back to work about a month after release and paid the price. What you have to remember is that you body needs lots of time to recover. I had a relapse this past July and am still out on disability currently. Listen to your body and get lots of rest. People can’t see whats going on so they will assume you are getting better faster than you really are.
This forum, and the folks here, are a great wealth of experience and help.
Take care and come back and ask as many questions as you would like and let us know how you are progressing.
AnonymousOctober 5, 2006 at 10:24 am
Welcome! We’re glad you found us, but sorry you had to go through this. I was diagnosed with GBS in Dec 05 and I am still healing but able to walk and drive now. It is frustrating to deal with people who expect daily/weekly improvement…in my case I didn’t see any sudden changes. I started recording in a journal what I could do each day and when I went back to read it each month I could see that I was actually progressing — very slowly. All I can say is that you have to tell people that this will likely be a long term healing process. If you read some of the other forum posts you will see that each of us heals at our own speed.
There are many on here that have been through what you are going through right now. Feel free to ask questions, vent about how you feel, or share your story. Rest is key!!! If you push too hard you can set yourself back…so learn your limits and listen to your body when it says rest. No one can tell you exactly long it will take for you to heal, but we like to say that GBS stands for “Getting Better Slowly”. Best wishes for a rapid recovery!
AnonymousOctober 5, 2006 at 12:19 pm
Hi catjoe, sorry you had to find us, but this is a great forum. I too had a mild case in February. I came home w/walker, about 1 week later a cane, and about 3 weeks after that, nothing. However, I still have effects from GBS. I am back to work 3 days a week for a few months now, but it is the whole day that is my problem, I have to watch not to overdo things which is real hard w/2 kids. Things seem better now that I am not doing so much therapy at the gym. Do you hve any p/t? it helped me alot. Good luck to you.
Also Stephen (morrada) sorry to hear abt a relapse. How did they know and were you in hospital??
October 5, 2006 at 10:11 pm
I can understand the feeling about the continuos questions about how are you doing…no one knows what you are going through. This week is one year out of hospital after 9 weeks – 2 CCU, 2 specialty hosp, and 5 acute rehab. Even toward the end of hospital stay I didn’t look “sick” other than needing a walker…My stamina is good now, but still have tingling feet and hands…that may be around for a while…but I’m used to it and can ignore most of the time.
Hang in and keep on keepin on.
AnonymousOctober 5, 2006 at 10:24 pm
Glad you came here, but sorry for the reason you need to do so.
The rate of healing, level of recovery, and kinds of residual problems are different for everyone. There is really no way to predict, it’s strictly wait and see. Don’t believe everything your doctors tell you – especially if they say you won’t continue to recover past X number of years.
Patience and rest are the most important gifts you can give yourself right now.
Best wishes, Suzanne
AnonymousOctober 6, 2006 at 4:20 pm
I’m a new person as well. I was diagnosed in November of 2004. I was back to work the first week of January 2005, but it wasn’t easy. I probably did too much too soon, but that’s just my nature. I had the MF varient, so the eyes didn’t straighten out until about April of 2005. I have some intermittent residuals, but nothing that keeps me down. Keep your chin up.
AnonymousOctober 7, 2006 at 2:51 pm
Welcome to ‘the Family’ Catjoe! As you’ve already read, time and patience and lots of rest ~ being good to you. I am 11 years out and people are still saying “I thought you were better ‘by now”. Those of us with this disease find it hard to understand, so just imagine how difficult for those who have never experienced it :rolleyes: Since reading the article in the New Zealand nursing journal ([url]www.jsmarcussen.com/gbs/residual3.htm[/url]) I have been able to better explain it to others. When I picked up my handicap parking card the lady said to me “you look fine, healthy, but your doctor would not have prescribed this if you didn’t need it. Hold your head up with confidence because you know why you need it”. I have ‘sent her blessings’ many times! Best wishes as you journey with this family 🙂
AnonymousOctober 8, 2006 at 5:53 pm
Unfortunately, it is my understanding that everyone recovery time is different – and as such no one is willing to provide a timetable.
I can only tell you my progess – within 2.5 months I was walking well enough to go on a trip to Vietnam – which was probably not the brightest decision but I am a little head strong and won’t let anything get in my way. At the same time though, I did get tired quite frequently.
I think the first 2-3 months were the worst for me as I was constantly tired.
Thereafter, I began walking normally and my progress (eg strength gain) steadily improved. I think by about month 6-8 I was back to 90% strength.
I would heed everyone’s advice of making sure to not push too much, but instead listen to your body and rest alot.
AnonymousOctober 11, 2006 at 7:58 am
Hang in there, Joe.
Add me to the list of similar story to you. Mild case in July 06, legs affected, frustratingly slow recovery, etc. It is hard to see day to day progress, but if I look at where I am now vs. 30 or even 60 days ago, the progress is there. I empathize with the frustrations of people always asking if you are getting better … no good answers, though. I have simply started to answer, when asked how I am doing, “I am excellent, but don’t worry, I am improving.” Definitely throws people for a loop.
AnonymousOctober 12, 2006 at 6:46 am
Hello and welcome,
I was diagnosed with a “mild” case in January 2004. I went back to work part time in Feb 2006. This has been the toughest year of my working life. Nobody knows how long each of us will take to recover and to what degree we will recover but never lose hope. I was offered a voluntary redundancy last Friday from the company I worked for. I accepted after 18 years of service as I now will take more time out to rest. I was lucky to leave with 2 years pay.
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