My question is…
December 10, 2007 at 8:56 pm
is many of you what people call very active persons. The GBS people here in Iceland that I have talked too is all very active if we ware younger we would be called hyperactive and would have had to have special care in school.
hope to hear from you guy´s and girls about this matter
AnonymousDecember 10, 2007 at 10:18 pm
Helga, I would be floored if anyone considered me hyperactive!:D I use to be very active, athletic, working the midnight shift at a hospital before all this stuff happened. Now I’m lucky if I can do more than 3 chores a day-even less if I shower in the morning.:( I keep trying but I haven’t found the magic potion to help me be more active. Instead of playing basketball I’m sitting in the bleachers watching everyone else play. Don’t compare yourself to others though, everyone is very different, and recover to different degrees.
Is that a pic of candles you made?:)
AnonymousDecember 11, 2007 at 8:22 am
this had been discussed years ago & it did seem many, many of us were very active pre gbs. even though i can only do a fraction of what i used to, i deliberately don’t do the whole fraction for fear of activating my gbs again. whether this real or imagined, i don’t know. what i do know is that i don’t want gbs again. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousDecember 11, 2007 at 3:41 pm
I was active before (snow ski, hiking and such) and still do the same things today almost 3 years out. It has taken time and it seems I have to exercise more to keep my muscles loose but I’ve even had noticable improvement in my arms and hands over the past 2 months. I was most affected in my arms and hands which is reverse for most people with GBS.
We have a ski trip planned in January and I can’t wait to get there. Last year when we went I was very nervous about it and took 1 day lessons to get acclimated again but did very well considering. My average sking time for the day was only 2-3 hours but that was better than nothing.
AnonymousDecember 11, 2007 at 10:23 pm
It is something that comes up in conversation often with other GBS’ers, I find that many were very active and [B]fit [/B]- I too was active and at peak fitness before GBS hit – but i wouldnt say hyperactive.
When you say hyperactive, do you maybe mean ADHD (attention deficit hyperactivity disorder?) The only reason I ask is because usually those are the people I think you may be referring to who need help maybe in school, or have it controlled by medication.
December 12, 2007 at 8:02 pm
Is that a pic of candles you made?:)[/quote]
Yes it is, Im over my head at the moment in candles, I think and sleep in wax *LOL*
December 12, 2007 at 8:23 pm
When you say hyperactive, do you maybe mean ADHD (attention deficit hyperactivity disorder?) The only reason I ask is because usually those are the people I think you may be referring to who need help maybe in school, or have it controlled by medication.[/quote]
Yes and no, for my self I would have to help with meds when I was kid, I have thought going through theck to see if I still can get help. There was no problem learning if I had peace and quiet, but I was every where and nowhere, I still have to keep very strick how my day should be and keep that way if I go from what is plane my whole day is ruin and maby more days. My dad keept me busy let me go with him to work from 9 years old when he was working at the evening so my mom could get some rest from me. He him self was ADHD kid, with reading disorder. he got polio
when he was 12 years old, and when this happen to me he thought it was somthing he gave me, I told him not to worried it was nothing similar:D So now you understand why I asked, I maby though this had somthing to do with how we treat our self, I know I have been hard on my self becouse of this disorder and wanted everthing to be ok around my kids,
AnonymousDecember 12, 2007 at 11:02 pm
Helga, What I have learned from this forum from both the GBS and the CIDP people are we are all healing different but have so much in common. The fear of what tomorrow will deal to us. No one wants a bad day and we are all cautious and try to listen to our bodies. I have good and bad days but I just do what I can that day. I hope that I can finish the plans for the week by the weekend. That never happens. My mind has not accepted the “new me” yet. I always think I can do more. Even a few minutes longer and I try but that does not work. I get in the middle of a chore and I have to quit. I take a rest or do something else that is where I can sit down. I do everything in stages. Mornings I am able to do a tiny bit more than in the afternoon. In the evening I don’t even bother. That is me time. I have put in my day. Evenings are wind down time for my mind and the computer helps drain the ideas that the brain has. Then I sleep till I wake up. Some days I think this is too early and others I think I have slept in a few hours. I have learned to accept that. I can do it because I don’t have to get up to ship off kids to the bus stop or go to work. I keep a daily routine and do what I can. I have noticed that in the last 6 months that routine has got easier to keep up with. I don’t have to rest as much but still take breaks. I divide chores into levels. I still have things like run the sweeper that takes my energy right down the tube. Grocery shopping is a long process and by the time I get the stuff home I drag the stuff into the house and leave the other stuff in the car or inside the front door till I can get back some energy. I used to come home from PT and OT or swimming or Yoga and want to take a nap. I don’t take naps as much now. I am able to go out with friends and shop but I drop before they do. I am good for lunch and maybe two stores. Once big store without a scooter to ride around is too much. I try and get so much done in one day of shopping and stopping here and there I know I will never get it all down but I pick and choose what I can get finished. I usually skip getting heavy items from the grocery store or pumping gasoline. The guys can do that. I am also lucky I have my husband as my caregiver that does stuff I am not able to reliably get done. He does grumble but he does get it done. Now this Summer I was able to go out in the yard more and do things while he cut the lawn. My strenght is coming back and I am amazed how much getting my strenght back has cut down on the naps and breaks. I know I was over doing some things. But in the back of my mind I always knew the next day would have to be a slower pace day, so I could plan on that days events to be small tasks at home. Watch a movie and take care of myself. I learned to listen to my body from some of the very first messages I read here and have really never had a bad relapse. I also consider myself and have accepted the fact that I was active a few years ago but now the “new me” has earned the right to slow down and enjoy life! I hope you can do that. Maybe next year look back at your orders and produce items ahead. If the orders don’t materialize for them you also have your gifts to give already done! I am waiting for organization to fly into my window too! Honestly I don’t know how the ones that had to go back to work are able to do it! Weekends have to be the days they crash!
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