Now What???
Went home today for 8 hrs, it went OK. I was able to relax & take a nap, it was the first time I have been able to sleep at home since I left. I have found that it takes more effort to do things at home. My appartment is not set up for a wheelchair. It is going to take some work to get it set up. We need furnature that makes sence for the space we have. I got tired out from just being home.
I think it is more frustrating then anything else. Since sept I have been getting better, each day/week better then the one before. A few set backs but kept on getting stronger. The numbness is getting worse, whether it is from the spinal damage from my L3 L4 disks being mostly gone or damage from the lesion @ T2 pinching nerves or MS sypmtoms. My feet are very numb although I still have some feeling. My groin is numb, hands, face, I also have general weakness, it is too hard for me to put on my own coat/sweaters etc. I seems to be weaker then I was a week ago. I hope that it is just a bad week, but there is a chance that this is as well as I will get. I was talking to a nurse tonight & she was right this is allot better than where I was. I can do soooo much more on my own then I could a few short months ago. But it is hard not to be bummed.
I need to learn to be kind to myself. I need to learn how to do things that I can enjoy at my function level. Told about ebooks, got to learn more about them. I was also told that I may be able to borrow ebooks from CNIB I am going to check on that in the new year. I need to do things that will help me feel useful. I realized today if I do not get better, having the energy & strength & molbility, I may not be able to go home.
As I said frustrating day. I know it is most likely a bad week.
I never knew what MS was. Even when I got my dx I did not know what it was. I thought OK paralises given steriods got better I was only paralised for 2-3 days went to rehab and on with life. I got soooo bad over spring early summer & the long term did not hit me. It has only been the last couple of months that it has hit me. Now I am mad at my family doc for not seeing what I was going through. He was so blind. Over they last 20 I have tried to tell doc's what I was going through. They all said I was crazy. It is hard to think back at what I went through. At least now I am believed. That is so weird in it's self. I am not crazy I am ill.
I think I am finally accepting what has happened. It took long enough. My family doc that I have now told me I have to accept that I have an illness. He told me I had to stop fighting. I am still fighting with my symptoms to do my exerecises to try to get as strong as I can, so I can go home. It is setting in that it is going to take months.
The hardest symptom to deal with is the vision problems. I read allot I have 300 books at home, I read them over & over again. I can deal with almost anything if I can read. Now even when I can read, my eyes get tired & then I can not see clearly enough to read. I think I am going to look into a magnafier. I will talk to my OT.
Today my kindness to myself, is to fogive me for not being able to do all that I want to do.
I think it is more frustrating then anything else. Since sept I have been getting better, each day/week better then the one before. A few set backs but kept on getting stronger. The numbness is getting worse, whether it is from the spinal damage from my L3 L4 disks being mostly gone or damage from the lesion @ T2 pinching nerves or MS sypmtoms. My feet are very numb although I still have some feeling. My groin is numb, hands, face, I also have general weakness, it is too hard for me to put on my own coat/sweaters etc. I seems to be weaker then I was a week ago. I hope that it is just a bad week, but there is a chance that this is as well as I will get. I was talking to a nurse tonight & she was right this is allot better than where I was. I can do soooo much more on my own then I could a few short months ago. But it is hard not to be bummed.
I need to learn to be kind to myself. I need to learn how to do things that I can enjoy at my function level. Told about ebooks, got to learn more about them. I was also told that I may be able to borrow ebooks from CNIB I am going to check on that in the new year. I need to do things that will help me feel useful. I realized today if I do not get better, having the energy & strength & molbility, I may not be able to go home.
As I said frustrating day. I know it is most likely a bad week.
I never knew what MS was. Even when I got my dx I did not know what it was. I thought OK paralises given steriods got better I was only paralised for 2-3 days went to rehab and on with life. I got soooo bad over spring early summer & the long term did not hit me. It has only been the last couple of months that it has hit me. Now I am mad at my family doc for not seeing what I was going through. He was so blind. Over they last 20 I have tried to tell doc's what I was going through. They all said I was crazy. It is hard to think back at what I went through. At least now I am believed. That is so weird in it's self. I am not crazy I am ill.
I think I am finally accepting what has happened. It took long enough. My family doc that I have now told me I have to accept that I have an illness. He told me I had to stop fighting. I am still fighting with my symptoms to do my exerecises to try to get as strong as I can, so I can go home. It is setting in that it is going to take months.
The hardest symptom to deal with is the vision problems. I read allot I have 300 books at home, I read them over & over again. I can deal with almost anything if I can read. Now even when I can read, my eyes get tired & then I can not see clearly enough to read. I think I am going to look into a magnafier. I will talk to my OT.
Today my kindness to myself, is to fogive me for not being able to do all that I want to do.
Replies
I\'m so sorry you\'ve had such a bad week. The doctors have been very wrong in the past and maybe they will be wrong again and you will continue to improve so you can go home once and for all with Bruce and your furry child.
It took the doctors almost 40 years to get my MS diagnosis right. No, it wasn\'t \"Housewife Syndrome\" or that I was wired wrong or tennis elbow or a host of other strange things. I went to a kindly older Doctor once. People flew in from all over the world to see him for his expertise. He told me that doctors don\'t know everything. They only \"practice\" medicine. I thought Wow! now that\'s a wise man. It\'s too bad more doctors aren\'t that humble and really listen to us.
I hope things get better for you. You are right about being kind to yourself. But, that doesn\'t mean you have to stop fighting. Never give up and never give in.
Gentle hugs,
Linda