Uppdating from Iceland

last year we got 8 GBS cases here and two of theim was cronic, so yes it is much for we are only 300.000 in popularty. but some year are none digagnosed with GBS. I got it from chicken bacteria (camfoily) i dont know how it is writen. I started to smoke again, I did not want to smoke while my hands was parilised, but when I could hold a cigarret then I started again, stupied me 🙁 . I dont think the climet here have to do with how many get this but it an´t helping with recovery. When I go out and it is cold, I get double vison and it take me few hours to get my shight right again and it makes my very tierd. so if I was in warmer climet this would not happen I dont know.
Helga

with low walker, it is unbliveble much freedom, Im not alowed to walk with out some one watching over me if I would fall. Im still with drop foot on the left one. but the right one is starting to be normal.
tell you more next week.
every one take care, love and hugs from Iceland.

Now they in the rehab center are trying too unrehab me .. I have been so long time in some hospital that Im now send out in long weekends that is Im 4 day out of the rehab at my home, and only 3 day in the rehab 🙂 well Im walking fine with the low walker but I dont get as fast as I do in the wheelchair 😀 my left foot is still droping down when I walk but I can control it little when I lay down 🙂 Im feeling happy to see that Im seeing the end of the rehab in 1 of june. But at the same time it worries me, how will I cope in the real world, I was used to do all things by my self, now I have to ask for help doing things, like taking the laudry and put it into the closet, well it is not so much for me, I hope I can do this very soon.. other wise my hubby need some happy pills to stay in sane near me:D
best wishes to every one, love Helga

[LEFT]Well this week have been fun at the rehab, they tried me with crutches, and I could do it.. I’m not good in balance, but I could do this, now I’m practice in this walking 🙂 I thank god each day for my progress, and sometimes in the morning I forget I’m still little paralyzed in my foot, at least I don’t stand up and walk away from the bed:D. I’m getting better and better in the kitchen :p So now I’m starting to get my favorite food again.. after all these month in hospital and rehab it is wonderful too have my own homemade food.

They want me to let go of the wheelchair next week, but when I get tired I’m allow to use it. It will be strange to stop using my lovely wheelchair:D

I think when you have GBS experience then you live change, you have not so much tolerant for negative talk, and you shut up people that want to talk like that to you, about others. I have never been much for talking about others, but I feel that now I only want the best for everybody, and I don’t like when I hear talking negative about others, it is a man in the rehab that do this and I told him to shut up this was not the way we talk here, I would never had this courage before but lot have change inside me since I got GBS.

[/LEFT]

I come home from the rehab for good. Im always walking faster. my balance is not good yet, that bothers me alot, Im so afraid it want come.

how long did it take for you to get the balance ok from you could start walking with help?

But Im doing good and got little knot in my stumac for I worry going from the rehab. Im so secured there 🙂

Im out of the rehab.. Im little afraid to deal with things at my home, feel so little in my soul. Im so afraid to make mistake.. Im a perfictionist so I have to make my way to understand that I cant make that demand to my self.

Im doing okey walking few steps on my own.. everybody is afraid when I do this, but if you dont push your self nothing happen. Im getting better and better with the crutch so hopfully I will use theim more then the walker when i come home for good.

One thing does any one feel more cold in your hand and body after having GBS, Im always cold ?? I dont understand that.

Well I’m going to start my last week at the rehab on Monday. I’m feeling OK, I can walk few steps on my own.. but I’m like robot when I do that. Last week my feet went nub like when I got paralyzed and I could hardly move it, I think I have overdue me walking around the store´s in Reykjavik, was walking like 2 hours constantly.. was feeling rather bad but it was so much fun going out with friends I did not want to complain to them 🙂 but I learn a lesson about sit down when your feet is killing you 🙂 it is 7 month since I was dx with GBS and it is still long road ahead to get full “recover”
One victory .. went to shower all on my own.. stood there and wash my hair and body.. how great it was … next step is to get to my spa in the garden, what a wonder that will be 🙂
take all care and I tell you more how it is to be home for good.

Hi every one and yes Im home at last 7 months have past and Im still on recovery road. I took home wheelchair, walker and crutch. I hope I dont need the wheelchair much, but for long distance it can be nessesery to use it :rolleyes: My daughter and her babies are here and it is nice to have them around. It seems all so normal. exsept when I start walking and need all this space with my walker 😀 my granddaughter walks with me and say granny is walking, she realy enjoy it.
I can take few steps on my own, it is very good feeling. Im going to keep up exercise with local therapy and also try to find a swimming pool that I can use.

My doctor with out my asking minimezed my Lyrica meds and what a pain Im living up now, told him this morning when he was saying good bye to me that this was too low dooze of Lyrica, he was amazed but gave me prescription for 75mg of it. This doctor is the doctor at the rehab center and he have looked at me like 4 times since I came in for 5 months ago. I have no belive in him, so Im turning to my neuro doc that gave me the IVIG in the first day of my GBS.
Sorry how it is long but Im so glad to be home again 🙂 wanted to share with you 🙂
xoxoxoxoxoxo
Helga

I was trying to work at my workshop, in the morning I had went to my therapyst and down some workout exersice, then in that afternoon I went to the workshop, after few min walking around taking up things and then try to make some candle then my feet start to feel like burning and I tried to sit in few min and then start again working then the pain went worse and worse. It was almost unbearable, then my hubby came and told me to get my ass to the bed, it would come another day after this one and then I could do this candles. I know many off you have had a strange feeling in your feet and I remeber this when my GBS started that I could get very hard burning feelings but on the recovery I was so sure that would not happen not so hard pain, I have had pain that is like one or many nerves was pull too but this was diffrent. But from this all Im doing well taking more steps on my own. And insite I can almost walk between room with out any thing, I have always wall to lay to if I cant go further.
xoxoxoxoxooo
Helga

Thanks Cheryl for your post, yes I think I have tendersy to overdue my self. I was with my therapy and he was pushing me and he dont know me well now, he was treated me before I got GBS and he is confused how little I can do before I start to complain and he sees how trimbling I get on my feet when Im doing exercise for the feets. well enough of rambling I think Im going to lay down a little bit for I need to get out of my shoes and socks.
xoxoxoxoxoxoxo
Helga

I thought it would be easy coming home, I almost lost my positive thoughts, it is so hard asking people to help you all the time. I try to do as much as I can but sometimes it is hard because of all the damm pain I have in my feet’s, and I get needles and pins in my arms and leg’s when I have done little bit too much, and that is very common with me I don’t know where to stop. My therapist is starting to understand that I’m not like I used to be and I’m not a stroke patient. So he is going little less on exercise and more to stop my pain with electric and he put it on my this morning and it have worked fine today. Wish I could have those thing in my home, I could use less Lyrica if I had it.
But I’m doing OK and I’m starting to do as I said before more and more, I can walk here inside with out anything but when I go out I need the walker because of the drop foot I always put my left toe´s drop when I walk more then 5meters outside :rolleyes: I hope that will be over soon or not.. it depends of if my nerves heal right. who know not me that for sure, but my family believe I will be completely as I was before, but it seems to me few of us will be as we was, we are all little crazy people as we all got GBS and one thing I have seen all people I have talk to is one of those super people that was every where and nowhere, and had lot of smile to give, I think we will have lot of smile to give but being every where and nowhere that is a different story 🙂 well enough of this rambling here, every one take good care and lot of hugs and kisses from Iceland to you all

Well I progressing to right direction, I walk on my own here home, but my feet are like balloons, and everhting that is hard and get under my feet are like needles, I have little feelings in my toes still, but Im learning to walk and it is getting there. But my feelings in my feet have not change for around 2 months, and Im wonder if this is what Im going to have for the rest of my live, numbness and wool feeling from knees and down. I have still numbness in my fingers but what a heck that is ok.. I dont walk on theim 😀 now Im getting into my 9 month of recovery so I have been losing hope getting better 🙁 But I have set my mind to it if I dont get better then this well then I work from this point and make my live good and stop wonder if I had done this or that I would be better. 😉 Im going to try again to work at my workshop next week, I have been doing what a good housewife should do try to clean up the mess that was made while I was back in recovery, I take it slow and only do one thing at the time, but it is nice to see clean windows and things like that. And I can look at theim and say to my self [B]I DID THIS. [/B]
Well now I have rambling enough for time being.. Hope every one has a good weekend, and rest and take care of your self … as you all know we are one speacal family 😀

I’m getting better with walking but still need to use the crotch outside. I would love to say I don’t feel any pain, but that I not so, I have still no feeling for my toes, but if I putt my foot on little stone´s it is like needle, and it hurts badly. But the good thing is I can get into shower on my own, I’m doing all the cooking here home, I wash all laundry, but I think I might be doing more then I should because I’m starting to feel my knees is sometime acting like when I was getting paralyzed and I get numb all away up to hips. But I need to push to get my home back. It is so much mess in so much places. it is normal, my hubby don’t see it with my eyes. well but I’m doing good I cant complain, I stand on my two feet and can use my hands, what more can I ask for. other residual that I still have, I want to learn to live with it and I thank each day for that I’m here and I see my kids grow. I’m now 46 years old, my mom died when she was 52 years old, So I try to love each moment that I have, it was hard lesson when she passed away.

Im starting to be impatient I want more progress. I still have no real feelings still in my feet´s. and my knees are more and more weak, and my left foot is numb up to hips most of the time when Im walking. My hubby thinks that Im getting ahead of my self. becouse Im so eager to be indepentant and there for Im feeling all this resudant. Maby he is true and I realy hope so. But Im doing good and instead of talk much about how I feel I look forward and try to have each day as normal as I can, exsept Im still not making progress in making candles, so now Im going to do somthing else while im waiting and that is making scrappbooks for my kids and my self 🙂 I think it will be good for my hands to make somthing like that just to get some fine exercise for theim. Tons of love to you all, I do not know how I hade done with out you my internet family 🙂
xoxoxoxooxoxoxoxo
Helga

Well guy´s, and girls´s Im still here trying to start my buisness, but I have been deeling with lot last few days and I feel my energy is lower and my numbness is more, I cant tell you much what is going on in my live becouse my hubby and I are under very speacial pressure from the goverment it came as much sock to me and the day I was told my legs and my hands started to get some cramps and the numbness went to the hips, I can not sleep much and my appertide is very little, that is also good, maby I loose some pounds:D. Im not loosing my humor and that keeps me up still. What could I do to relax, Im trying to use stilnoct but that only works in 4 hours and then Im awake, I dont take any nap over the day my nerves are to tight up to do that.
hope some one can give my some addvise about this,
xoxoxoxooxoxxoxo
Helga

Thank you all for nice words towards me, Im realy scear still and have nightmares about what is coming, my hubby feel so sorry putting me through this all. But I hope and pray this all goes well. I went to my therapist today and he told me he would aprove me driving. It made my heart happy to hear that. he is worried how much this stress Im dealing with takes to my approvement. He is very good to me these days no presure on exersices only light and nothing heavy.

well it is long time since I have given you any update on my recovery.
I went to the doc that treated me at the hospital, before I went to the rehab. It was so good to see him, well he give me more months to gain more right feelings in my hands and feet, but he told me also I should be be paired that maybe it is as good as it get. He told me to practice and practice both with my hands and feet and gain more strength and I would be able to loose the crouch but maybe the burning and this strange feeling I have in my feet will be there, but I would get used to it. Yea since I got home and my improvement in the this tightens and burning and tingle in my feet did not show, I was afraid this would be result, but I’m not one year old since I was onset of GBS so I still have hope don’t I ?
my cramping hands when I hold telephone to my ear, he thought was something I would just have to live with, it was just wrong message that my head was sending to my hands, so my shaking hands are my signature from now on:D not bad.. some hubby would say so 😀 Hope every one is doing good, and I will try to read some post over the weekend and see if I can help some one with their problem, at least give them hug.
love you all my dear family here, I don’t know how I would have survived my GBS if it was not for you all. You gave me bravery and hope.

I have not stooped smiling Ali, but sometimes the feeling of not being able to do little better is driven my crazy, but that also help me keep me on the toes looking for improvements. Like some of my friends say you are a [COLOR=#8425a7][COLOR=#000000]perfectionist about me, and I think that is my main problem, I don’t like people to see me stumbling around.:D [/COLOR]
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yea Im going to put some update here. Went to my rehab to be check how I have been doing. And it turns out my feet are stronger YEEEE, but my hand are almost the same little better but nothing more. I have gained about 60% of what I used to have of strenght. They say practice and execise each day to use your hand and feet.
They want me to go to swim at least 3 times a week and work out in gym 4 times. I know it sound crazy, I work at my candleworkshop at least 2 -4 hours a day, so it dont leave much time for both swiming and going to the gym and take care of the home and the family. Well I would say this was full sceadule for people that are in very good health 😀 I dont see me follow this up, either is it swim or gym not both on same day.
I asked again what they thought about me getting more feelings in my feet. and they think it will not come much from now. They did some test with tuning fork, I did not feel much from knees and down. but I walk and I will get over this pain I have in my feet, I have got over bad pains with that just tolarete them until they get normal for me. That is how I have gone through my back pain, so this will be the same. bad in the morning and evening, but ok while Im on the move.

I know.. you sure all say.. no Helga no… dont do this, well I was in this program year ago and then I got GBS and I could not use my surgery day that was 12 of dec 2006, now Im starting all over again and I hope I will be soon ready for the surgery, need to loose 14 lbs so I can stand the change going on the surgery board.

Hi every one, and yes Im alive and trying to live my normal life. How that is going is strange, Im battle with pain each day, like most of us does. Im getting my candleworshop on the feet again, and I did not know I had so much popularty or did not remember how popular my candles was. So I have of course been overduing my self and making candles all day long that should I not do for then the days after are like hell for my burning and bad pain comes both in hands and feets, But my hubby was asking if I was not tierd I answer him, I can get enough rest in the grave 😀 he did not laugh;) but I need to work to keep my sainty I was getting very bored of doing only house work and could not do theim proper becouse somthing I still cant do, but I can stand on my feet and make candles, and it takes my mind of thinking tomuch about my pain.

I just wanted to say hi and let you know Im alive and still standing. I have found out that traviling long way in car is not my thing, have you found that out too? I get so tierd and have trouble sleeping after even though I want to get some rest, the pain get too much and I have to take sleeping pills to shut my mind and body down. I went with some friend to summerhouse over the weekend and well I sleept most of the time and I got tierd of all the drinking they was doing, I did not touch it, Im afraid to blend alcohole and neurotine together and then Im not so good on my feet that I need a beer to help theim geting worse:D My friends did not realise how sick I was in the real time, they thought I could do this and so did I, but I was getting worried the day before Friday that I could not make it becouse of my diarrhea but I went and they had to stop two time on 3 hours travel to get my to toilet, and this was all the weekend I did some eating and then toilet and then sleep. **** happens:p . Well this is little of me and I hope every one is doing as best they can, and keep up humor for this things we call Get better slowly. Love you all and BIG hugs from Iceland, Helga

Hi every one, Im getting stronger each day after the secound attack, but Im still like I was last summer and i was hoping I would be better sooner. Im very pathient lady.. now my hubby say AHA :rolleyes: I have hard time understanding why again why me. But it is like this and I know that Im not given bigg hope of recovering for full. my feet seems to have damage more and Im still numb in my fingers and always cold… I wonder why:D [IMG]http://www.simnet.is/tofraljos/utganga.jpg[/IMG]

This is my workshop and I hardly can walk out to it.. but I try and get my coffie there out and make some candles and then in the house again for nap.
xoxoxoxooxoo
Helga

I would love that,, love heat and sun. Im little dizzy this time and it is beouce of the sleelpingpills Im so maby Im not good in spelling or fast on the keybord.somtimes I wiss ther was some mircule that would set you free and you woul never have to take any pills and you get free to go from all of this. I dont know how I can tell you my family how despret Im to stand in this I dont want to tell when Im feeling so depressed and somthing is bother me. like to day my hands are all shaking and my head hurts, my feet are like havy meatal. This is no progress I feel going backwards when they are like this, it also efect my eye´s somtimes they dont like to watch much tv og be in the puter long time. I blame it on the nurotine. maby I should reduce the that med to see if I can work better and have more energy. What do you do to get more energy Im trying to eat healthy food cooke it my self or my daughter. but somthing is missing my energy go down and I though that when after few weeks it would go up. Im always with throughin up but never it happen. It is strange I thought when you finish your IVIG then things would start to be normal again. speacialy when you did not paralizd.

Im starting to feel better and my numbness in my feet is from middle of the calfs. and my hands are still numb, but I can walk, I have to think each step but Im starting to get faster and that tells my my mind and feet are starting to talk together.
I got some stumac flue in begin of this month and dont seems to get over it, doctor´s are scear I get relaps from it. my feet have got havier but what a heck if I cant get little flu, my hubby is on his neddles and pins, very scear about me. I try to have as normal life as I can but somtimes Im so tierd that I cant work like I want to. And doing all the fine job in my candlemaking makes my nuts, my hand is so clumsy, but with practise I get there somday.
Like we say one day at the time, it seems to me forever, I did not thought when I got GBS first time it would take such long time to get normal again, but Im still not normal and I think maby I have to stay like Im forever. But if that is the case I will learn to live with it and respect that and make life beautiful with me like I´m
here is a link to a album about my family if you are intresting in what life is in Iceland
[URL=”http://www.skrifa.com/bill/album/index.html”]http://www.skrifa.com/bill/album/index.html[/URL]

xoxoxoxoxo
Helga from Iceland

Im working my ass of like always but now my hubby tell me to stop and I put some remind in my cellophone when to eat and take pills:D
Im learning to use my feet and hands as they are. It is balloon walk with needles and pin and somtimes very much pain in my joints. I think it might be my osteoarthritis but who cares:D pain is pain.
I have travel alot this summer and loved it a lot, here is picture´s of my traveling this summer, here is the link [URL=”http://www.tofraljos/ferdalog/”]http://www.tofraljos/ferdalog/[/URL]
I had great wist here in Iceland, one of our member came to Iceland and I met him and his wife, his name is John and his wife is Sandy, it was wonderful to meet theim and I did not feel so alone seeing and talking too theim both. My hubby likeded much to see theim, and we wish we could have more time with theim. This was one of best time I have had since I got onset, I wish I had meet some one while I was sick, becouse you feel so good to have some one near you that have this same thing and have done so well through the years, even though things are not like it was before onset.
well enough of the babling, I have been reading the forums and I welcome all new members and hope they can find some help in this wonderful forums that have help me so much getting through my GBS
xoxoxoooxoxox

Well, we are living in almost closed country today, we cant get any $ or Euros in banks, and we have hard to get things from other countries becouse our Central bank is taking care of who gets to import things and who dont. It is very strange and very stressful, each day you can see it is less and less of imported goods, only food and meds are alowed in importing. I feel that the stress does not do my good so I try to stay away from news and work and work, I still have enough to make my candles and will until in begining of new year. People in the country is very mad and dont know what will happen speacaly after the British goverment put us on terrorist list. We have never used wepon here and we dont even have army, you guy´s was our army until last year. Many people here have lost their savings speacaly older people, and it hurts to see theim having nothing for the those day´s they tried to save too. my father lost lot of money, and he retierd and this was his save way to good life in the old days. one of my son in law lost his job, so it is strange´s and they have their secound baby on its way. My secound daughter is afraid they will lose their house, becouse how the loan is getting higher every day, they say to us the inflation is 20% but how everthing is going up in price I would say it was 50% I know this is maby not the right place to write this but I had to give you a glimps what life in Iceland is today.