Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Hi Kathy and , I guess I read somewhere (maybe in a CMT newsletter?) that those of us with CMT have muscles that have to work twice as hard to do normal everyday things. Just think if a non CMT person is tired from cleaning her/his house, wow, we can get wiped out from that. That is why ordinary things make us tired, and tired more easily. Hey, it took me an entire month last October to plant my spring garden seeds. But it got done. (now I have beautiful flowers too!) I have had to learn to just take my time and realize that not everything has to get done NOW! We all have different types and degrees of CMT and we need different 'help'. For some a wheelchair/can help and really make a difference in one's quality of life. 8 or 10 years ago I remember my feet were absolutely killing me, I begged my Dr. for a wheelchair...he said 'no' I am going to keep you on your feet as long as I can...so, I had to get some in-shoe orthotics made. Boy what a difference that made. The pain has never totally left, but at least I could resume daily activities and get on with life. My shopping is done on the Net, since it is so easy and wonderful too use. Last time I went to Disneyland, I did rent a wheelchair, because Disneyland is a very big area, and I wanted to fully enjoy the day. And I had a great time. My friends were exhausted at the end of the day, but since I'd been in a wheelchair, not using my feet, except to get out and go on the attractions, I wasn't tired. LOL they made me drive home in the worst Los Angeles traffic! Guess I feel that my brain is the best muscle I've got and I try to 'exercise' it alot, think of new ways to do things and ways to make my life easier and more enjoyable. My brain doesn't seem to mind that extra 'twice as hard' work! Now, if only I could find a remote controlled vaccum cleaner! Gretchen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 In a message dated 04/05/00 06:14:06 p.m. Pacific Daylight Time, liliwigg@... writes: << That is why ordinary things make us tired, and tired more easily. Hey, it took me an entire month last October to plant my spring garden seeds. But it got done. (now I have beautiful flowers too!) I have had to learn to just take my time and realize that not everything has to get done NOW! >> I kill everything in my garden..... I just hate that. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 In a message dated 04/05/00 06:14:06 p.m. Pacific Daylight Time, liliwigg@... writes: << That is why ordinary things make us tired, and tired more easily. Hey, it took me an entire month last October to plant my spring garden seeds. But it got done. (now I have beautiful flowers too!) I have had to learn to just take my time and realize that not everything has to get done NOW! >> I kill everything in my garden..... I just hate that. jenny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Hi Gretchen > have had to learn to just take my time and realize that not everything > has to get done NOW! That is what I realized about 5 years ago :-) The problem is that someday the house looks so mixed up you just have to do something and then it is a lot more work. But my problem with this that I work full-time and when I get home I am not able to do the housework. The worst thing on that is that we have 3 cats (two persians with long hair and one mix with short hair (by the way she is deaf and that makes it very hard sometimes :-) )) and our tapestry soon after cleaning looks awful. But I can' t use the vacuum cleaner because I immediatly get pain in my back when I use it. So my boyfriend has to do it and he doesn' t like the work either :-). But we always find a way to solve that problem. The wheelchair-topic is handled here in Germany differently. My mom was told that she probably will have to use a wheelchair some day. But her cmt is a bit better than mine. I was told that I will probably never have to use one (but it could be told not to worry me). In my opinion a wheelchair is useful if you notice that your a not able to do " nice " things for more than half an hour anymore. At the moment I make the experience that I can' t do the " good " shopping (clothes and this stuff) for more than an hour but this is because of the surgery. I hope that my condition will progress in the next 5 month. So I ordered some clothes in a warehouse-catalogue and this also works good. Bye, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Hi Gretchen > have had to learn to just take my time and realize that not everything > has to get done NOW! That is what I realized about 5 years ago :-) The problem is that someday the house looks so mixed up you just have to do something and then it is a lot more work. But my problem with this that I work full-time and when I get home I am not able to do the housework. The worst thing on that is that we have 3 cats (two persians with long hair and one mix with short hair (by the way she is deaf and that makes it very hard sometimes :-) )) and our tapestry soon after cleaning looks awful. But I can' t use the vacuum cleaner because I immediatly get pain in my back when I use it. So my boyfriend has to do it and he doesn' t like the work either :-). But we always find a way to solve that problem. The wheelchair-topic is handled here in Germany differently. My mom was told that she probably will have to use a wheelchair some day. But her cmt is a bit better than mine. I was told that I will probably never have to use one (but it could be told not to worry me). In my opinion a wheelchair is useful if you notice that your a not able to do " nice " things for more than half an hour anymore. At the moment I make the experience that I can' t do the " good " shopping (clothes and this stuff) for more than an hour but this is because of the surgery. I hope that my condition will progress in the next 5 month. So I ordered some clothes in a warehouse-catalogue and this also works good. Bye, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 In a message dated 5/4/00 6:13:40 PM Pacific Daylight Time, liliwigg@... writes: << Now, if only I could find a remote controlled vacuum cleaner! >> ******** let me know tooo. LOL LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 In a message dated 5/4/00 6:13:40 PM Pacific Daylight Time, liliwigg@... writes: << Now, if only I could find a remote controlled vacuum cleaner! >> ******** let me know tooo. LOL LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 Moonglow21@... wrote: In a message dated 5/4/00 6:13:40 PM Pacific Daylight Time, liliwigg@... writes: << Now, if only I could find a remote controlled vacuum cleaner! >> ******** let me know tooo. LOL LOL --------------------------------- --------------------------------- Quote Link to comment Share on other sites More sharing options...
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