Things are going OK for the most part. It is just getting through the same crap everyday. I have not slept well for almost a week. I have been busier then I have been in almost a yr. So not sleeping at night busy during the day. Last weekend I kept quite. Monday I had more training for the crisis line. Last night I did not sleep well at all once again. I did fall asleep near dawn. This morning when the nurses came to wake me for breakfast I was nauseated. So I got a shot of something to calm my tummy. I did not eat & I stayed in bed. The PSW came in around 11 to wash me up. I stayed in bed after that as well. I slept the morning away. I ate lunch well just a bit of lunch & stayed in bed & slept a bit more. I got up at 1:30, I did not even get dressed.
I saw my therapist today & we talked about the medical directive I want to do. She thought it was a great idea. She is going to talk to my SW & she said I should talk to a doc to explain the risks & benefits to make an informed decision. She said once it was done & on my chart they would follow it. She said it happens all of the time here. I also talked about my swallowing problems. She thought I should get an assessment done. She said since I feed myself it is my choice if I want to use the "thick up" stuff. I enjoy a cup of tea & coffee & other things as well. I do not think they would be as enjoyable if they were thicker. I know sometimes they just put a bit in just make it slightly thicker, but I do not want to do that right now. I thought about doing a diet thing that some people with ms do but that won't help me now. There are very few things I enjoy some foods & drinks are one of them. I do not think it will help at this point. I want to make what is left of my life as good as I can make it. Not worrying about the little things.
The med's my doc put me on to see if it would help with the nerve pain are not helping. I am starving at night. I have put on more fluid so it is harder to move. I talked to my nurse tonight & asked her to put in the doc's book that I want to go off of them. I also asked for a swallowing assessment. I told her about what was happening.
Over the weekend I hurt myself. I went to the library to use the phone. I was trying to get close to the table & somehow I got my arm caught between the arm of my chair & the table. When I tried to move the chair to free my arm I moved it the wrong way I squished my arm worse. I got a big bruise on both sides of my arm & a lump on one side. I phoned my "chair people" & they are coming friday to slow down the turning on my chair. So I will not hurt myself again. A couple of weeks ago I burnt myself. I was putting a cup of hot tea on the table & I hit the table with the bottom of the cup. B/c of lack of feeling in my legs I did not know I had spilt the tea so I did not move the pants or put anything cool on the leg. Sometimes I feel like an idiot doing these kind of things.
I am going to Bruce's appointment with him tomorrow. He does not bring things up to the doc & the doc does not ask him the right ?'s. So I will bring up what I think is important & ask the ?'s he will not.
I am almost done the CI training for SAC. I will be able to go on the crisis line next month. I am looking forward to being able to do that. I will also start the volunteering at the center next month as well. Doing childcare. I will also be doing office work. It will be good to be useful again.
I saw my therapist today & we talked about the medical directive I want to do. She thought it was a great idea. She is going to talk to my SW & she said I should talk to a doc to explain the risks & benefits to make an informed decision. She said once it was done & on my chart they would follow it. She said it happens all of the time here. I also talked about my swallowing problems. She thought I should get an assessment done. She said since I feed myself it is my choice if I want to use the "thick up" stuff. I enjoy a cup of tea & coffee & other things as well. I do not think they would be as enjoyable if they were thicker. I know sometimes they just put a bit in just make it slightly thicker, but I do not want to do that right now. I thought about doing a diet thing that some people with ms do but that won't help me now. There are very few things I enjoy some foods & drinks are one of them. I do not think it will help at this point. I want to make what is left of my life as good as I can make it. Not worrying about the little things.
The med's my doc put me on to see if it would help with the nerve pain are not helping. I am starving at night. I have put on more fluid so it is harder to move. I talked to my nurse tonight & asked her to put in the doc's book that I want to go off of them. I also asked for a swallowing assessment. I told her about what was happening.
Over the weekend I hurt myself. I went to the library to use the phone. I was trying to get close to the table & somehow I got my arm caught between the arm of my chair & the table. When I tried to move the chair to free my arm I moved it the wrong way I squished my arm worse. I got a big bruise on both sides of my arm & a lump on one side. I phoned my "chair people" & they are coming friday to slow down the turning on my chair. So I will not hurt myself again. A couple of weeks ago I burnt myself. I was putting a cup of hot tea on the table & I hit the table with the bottom of the cup. B/c of lack of feeling in my legs I did not know I had spilt the tea so I did not move the pants or put anything cool on the leg. Sometimes I feel like an idiot doing these kind of things.
I am going to Bruce's appointment with him tomorrow. He does not bring things up to the doc & the doc does not ask him the right ?'s. So I will bring up what I think is important & ask the ?'s he will not.
I am almost done the CI training for SAC. I will be able to go on the crisis line next month. I am looking forward to being able to do that. I will also start the volunteering at the center next month as well. Doing childcare. I will also be doing office work. It will be good to be useful again.
Replies
Kayce,
Good for you girl!!! You are doing an awesome job, and taking control of what you need. I think the crisis line will help you soooo much as just helping other people no matter what you yourself are going through, is so rewarding! I am praying for you and Bruce and that the two of you can have some peace and happiness. :) Love ya!
Amy
I am so glad you will be going with Bruce to his appointment today. I always go with Mark. They forget or sometimes don\'t think things are important and don\'t mention them to the doctors. He has been there for you and it\'s nice that you can be there for him as well. It will also give you peace of mind to know what\'s going on with him whether good or bad. At least, you\'ll know.
Gentle hugs and joined at the heart, Linda
kayce, don\'t beat yourself up about needing extra rest sometimes. you are doing alot, not sleeping right, moving around more, so do what your body tells you to do, rest.
also, when i read about the \"mishaps\", your arm, burning your leg i of course, can relate to \"accidents\" due to me and ms. so what i\'ve learned is to SLOW down and think before i do things i used to just take for granted. now i try to think the task through, take longer to do it, but stay safer.
sorry if this makes no sense. i think you are doing \"fabulous\" with all you have going on with yourself and bruce...
many hugs, connie
Sending my prayers and positive thoughts to you. I think about you everyday, feeling that no matter what comes my way, I know that if Kayce can do what she does, I can certainly get through whatever I have. You are so strong. When a problem arises, you do what\'s necessary to fix it. It\'s great that you are going with Bruce to his appt. he is so lucky to have you :)