Out of hospital 10 days, whats next?
AnonymousJune 19, 2006 at 12:02 pm
Just feel like I am in the twilite zone, fearful of whats next. I was fine one day now Im an invalid 32 year old whose Mom has to do everything for her. I have trouble sleeping because of leg cramps, hot flashes,restless legs. Plagued by hot flashes and blurred vision. Keep waking up hoping this is a bad dream, seem to be making no progress but not going backwards either, can anyone relate out there let me hear from you thanks, mizliz
AnonymousJune 19, 2006 at 3:53 pm
Welcome mizliz, I just wanted you to know that I was 34 when I came down with CIDP and had to move back with my mother and felt [B]exactly[/B] how you do. The most important thing right now is to not overdo it, get lots of rest when needed, get PT and OT and follow your Doctors instructions. Getting yourself better is the first step no matter what your long term goals are, don’t be ashamed, you have a serious illness and things will get better. Anything I can do to help just let me know, my email is [EMAIL=”email@example.com”]firstname.lastname@example.org[/EMAIL]. Take care.
AnonymousJune 19, 2006 at 4:28 pm
I was 12 days shy of 40 when GBS laid me flat. When I got out of the hospital I was totally reliant on my mom, mother-in-law, and my husband. I also had terrible “hot flashes”, sleeping problems, pain, etc. My frustration level was very high and I felt like it would never end. I know everyone heals at a different rate but I seemed to heal up quite qickly (at least to a point). I re-learned how to write, how to walk, and I can now drive short distances – mostly due only to the nerve irritation from road vibration.
What helped me emotioinally was writing down all the little things I could do every day. Then eventually I realized that I was starting to be able to do more and more. Yeah, they were little things like “I can wiggle all my fingers today”, or “I wrote a Christmas/New Year’s card today”, and eventually it became “I can stand on my toes but can’t feel them” or “I took two steps on my toes and didn’t fall on my face”. 🙂
My point is that it will take time but it will get better for you too – just remember it is slow and if you over do it the fatigue will put you back several steps.
June 29, 2006 at 9:27 pm
Do what Jerimy said and and have a piece of……
Sometimes we wonder, “What did I do to deserve this?” or “Why did God have to do this to me?” Here is a wonderful explanation! A daughter is telling her Mother how everything is going wrong, she’s failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her Mother is baking a cake and asks her daughter if she would like a snack, and the daughter says, “Absolutely Mom, I love your cake.”
“Here, have some cooking oil,” her Mother offers. “Yuck” says her daughter.
“How about a couple raw eggs?” “Gross, Mom!”
“Would you like some flour then? Or maybe baking soda?” “Mom, those are all yucky!”
To which the mother replies: “Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!
God works the same way. Many times we wonder why He would let us go through such bad and difficult times. But God knows that when He puts these things all in His order, they always work for good! We just have to trust Him and, eventually, they will all make something wonderful!
God is crazy about you. He sends you flowers every spring and a sunrise every morning.
Whenever you want to talk, He’ll listen. He can live anywhere in the universe, and He chose your heart.
Life may not be the party we hoped for, but while we are here we might as well dance.
I hope you’re day is a “piece of cake”.
AnonymousAugust 1, 2006 at 6:42 pm
I was 20 when I got diagnosed. I spent a week in the hospital and realized I needed complete support from my mother when I returned home. To be honest, you should expect to have good days and bad days. For me the progressions came in spurts. At one point, I felt like I was going backwards again, but the next week I could walk down the hall without holding onto anything.
If you overdo it one day, then the next day you may not be able to get far from the bed. However, you will learn to listen to what your body is telling you. It is very important to remember those little progressions. They may seem little to most people, but to you they are enormous. I was lucky enough to have the support from my mother and step-father, my boyfriend (now husband), I also had occupational therapy and physical therapy 3 times per week, full body massages (light enough not to cause more pain), and I even tried magnet therapy in my shoes. I think that the family support and occupational therapy helped the most for me. I suggest trying a variety of things and see what works for you. Please don’t feel guilty about letting your mom take care of you- that may be the best therapy of all.
I would say work as hard as you think your body will allow for you to get out of bed the next day.
I wish you the best!
AnonymousNovember 27, 2006 at 5:27 pm
From my own experience, finally thinks will get better and better as days pass on. Hang on there, keep praying and if you have not done it, try, believe with faith that you will be recovered and in a month from now, please write back and tell everybody your success story, we are waiting. But please believe, things will not get worst, you have already been thru them. What you read in the post is thru, but not necessarily you need to go thru them, you can be and will be one of the success stories. Love you and hope you the best.
God bless you.
AnonymousDecember 8, 2006 at 12:11 pm
[B][/B] [COLOR=”SeaGreen”][/COLOR] I was 48 when I got out of hospital and completely dependent on my mother ,,, she did everything for me for several months! just do what you need to do to get better! GBS= GETTING BETTER SLOWLY! EVERYONE’S TIMETABLE IS DIFFERENT ,,IM NOT 52 AND LIVING ON MY OWN AND helping others through respite! 🙂 just keep going day by day,,one day @ A TIME!,,AND DO WHAT OTHERS HAVE SAID !,,,IF YOU NEED FURTHER help or assistance I VERY WILLING TO DO ANY THING I CAN FOR YOU! …… [email]email@example.com[/email] best of luck and hang in their!
scott j sieleman
AnonymousDecember 8, 2006 at 12:22 pm
I was 48 when I got out of hospital and completely dependent on my mother ,,, she did everything for me for several months! just do what you need to do to get better! GBS= GETTING BETTER SLOWLY! EVERYONE’S TIMETABLE IS DIFFERENT ,,IM NOT 52 AND LIVING ON MY OWN AND helping others through respite! just keep going day by day,,one day @ A TIME!,,AND DO WHAT OTHERS HAVE SAID !,,,IF YOU NEED FURTHER help or assistance I VERY WILLING TO DO ANY THING I CAN FOR YOU! …… [email]firstname.lastname@example.org[/email] best of luck and hang in their!
scott j sieleman
“MILLER FISHER GUILLAIN BARRE’ SURVIVOR” 2001
AnonymousDecember 8, 2006 at 2:45 pm
I am too a CIDP person with my ups and DOWNS sometimes it feels like the DOWNS are more than the ups. But I took the advice of the great people on this forum and I mad myself a diary of what is happening to me I write in it daily and then at my nuero appointment I take it to her and she reads it or I fax it to her and she has a daily record to go off of. This has been very benificial to me I can read all the steps forward that I have taken and they are a pretty good indicator that I am going in the upward direction. I had many emotional times and my family we either the root of it or they were oblivious to what I was feeling. It seems like they get just as tired of this as we do. But I know that I and everyone else here will be able to get through all the bumps in the road if we just remember that we must love ourselves and that were here for a reason.
You must learn your new abillities and work off those DO NOT OVER DO IT! If you do you will regret it. You will be doing more and more as everyone says slowly. We have become a world that cannnot sit still, But I love the fact that I can now take the time to stop and smell the roses (they sure smell beautiful).
AnonymousDecember 8, 2006 at 6:18 pm
Hope some of the posts by others here have helped to put your situation in perspective, and hope you are feeling better.
As for having your mother care for you while you are ill, that’s what family is about. My mother was there to help me through the problems and joys of an early marriage, raising a child, going to college and professional school, divorce, another marriage, career, and all of the things in between.
She is now 90 years old and still with me, thank God. Now she often needs my help. I am so happy to be able to do things for her. It’s my turn to give back to her. Your turn will come some day too.
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