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Thread: Progressing TM?

  1. #11
    Senior Member lynnifer's Avatar
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    Stress affects both TM and MS detrimentally.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  2. #12
    I was walking a little better this evening and took the garbage out. It is garbage night, so I had to take the can to the curb. The driveway was getting longer and longer as I pulled the can behind me (it is on wheels). Isn't it strange how a driveway, a hallway or a staircase can do that? It is like they stretch out away from you, so the more steps you take, the further away your goal seems.

    I didn't think I would make it back to the house, and then I went to get my dog out of the backyard and she ran off. She's a pug and cannot stay out in the snow, and may not find her way home. So I had to go get her. She was in the front yard, but when I finally got back inside the house I felt like I had walked across a mountain range!

    My girlfriend is going to come by after work and bring the garbage can back to the carport tomorrow. But, this is my responsibility. I have to find a way to get my chores done. People cannot be coming by after work to do my chores for me! They have their own chores!

    I have not been able to do anything more than the essentials since May. The house is starting to get, well...you just can't put off the deep cleaning for that long without some consequences. And now it is getting harder and harder to do the essentials. I told you about the laundry problem, but now there is also a dirty dish problem since I can't seem to stand at the sink longer than about 5 minutes. There are only 2 of us, but still.... I should change the sheets on my bed, but I am too tired. Everyday I consider it and decide to do it the next day. The clean sheets are still in the basement. There are too many things that are like this.

    Having a messy/dirty house makes me feel worse. If I can get a little bit done it lifts my mood, but then I can't walk. I feel like I am caught in a bind.

    I feel like my stamina is down to zero. I am trying to rest, eat healthy foods, get enough sleep, avoid stressing about things. I should be getting better, but I am not. How do people manage this?

  3. #13
    Quote Originally Posted by SunnyDaisy View Post
    I should be getting better, but I am not. How do people manage this?
    As to the first issue: "should" is a non-issue. The reality of your situation is not yet clear, so there is no basis for such an expectation.

    As to the second: People just do, when the need becomes clear. It isn't easy, but one finds ways to manage. It takes a long time.

  4. #14
    I guess my expectations are arising from the fact that I have had TM for 16 years and have developed ways to get things done, and to manage my "relapses" when I have them. But now my methods are not working. All the things I have always done to get out of a relapse are not working. I feel exactly the same as I did that dreadful winter 16 years ago when I first got TM. The only difference is that I now have a child to care for. She is the most important thing. Right now, most of my energy is going into caring for her, trying to keep her world as stable as possible. But, she needs a lot of stimulation I am not able to provide right now, and I feel pretty guilty about that.

  5. #15
    TM is not typically a relapsing-remitting disorder. Let us suppose (and of course, at this stage it can only be supposition) that you have actually had relapsing-remitting MS for all these years, and have now progressed to a new stage of the disorder. There will be an uphill period of adjustment, after which you will reach a new plateau. By that time, you will have devised variations on your previous methods of coping. You might stay at the new level indefinitely - there is no way to predict outcomes as yet, which (to me) is as much a blessing as a curse. Regardless of diagnostic label, you must deal with the facts on the ground. Life and necessity will teach you. You must force yourself to take one step of this process at a time. It is a discipline, a yoga of sorts.

  6. #16
    Senior Member lynnifer's Avatar
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    What happens in a case like this with the MS-drugs?
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #17
    First, MS must be definitely diagnosed. Insurance companies will not pay for the meds, absent the diagnosis. MS drugs are specific to that condition.

    There is presently a debate within the medical community as to whether or not MS meds are of any benefit in progressive forms of the disease. Previously, it was thought that meds would only delay the onset of progression, but some researchers now believe that treatment might slow progressive forms of MS, as well (on the premise that subclinical inflammation is a characteristic of MS, itself - which would signify that remitting v. progressive categories are essentially meaningless).
    Last edited by Bonnette; 01-26-2011 at 09:17 PM. Reason: clarification

  8. #18
    Quote Originally Posted by SunnyDaisy View Post
    I guess my expectations are arising from the fact that I have had TM for 16 years and have developed ways to get things done, and to manage my "relapses" when I have them. But now my methods are not working. All the things I have always done to get out of a relapse are not working. I feel exactly the same as I did that dreadful winter 16 years ago when I first got TM. The only difference is that I now have a child to care for. She is the most important thing. Right now, most of my energy is going into caring for her, trying to keep her world as stable as possible. But, she needs a lot of stimulation I am not able to provide right now, and I feel pretty guilty about that.
    Sunny, one other difference is that you are now 16 years older! We all have to deal with getting older and possible limitations, but when you have a chronic health problem, it's amplified. You have to conserve your energy by simplifying as much as you possibly can. You also need to do everything possible to take good care of your health. You may have to adapt your methods and be creative about new ones.
    This has been a hard winter. Things may improve for you when the weather warms up and you may be able to make progress on things that may have piled up. If you perceive "relapses", you might want to keep a journal to see if you can identify patterns. Nothing elaborate! Just use a cheap spiral notebook, keep it in a handy spot, and jot down anything that comes to mind...milestones, things that help, things that don't help, times you can't sleep, strange symptoms, periods of improvement, especially tiring activities, whatever. Date each entry. Read back through this every month or two to see if you see any trends.

  9. #19
    Quote Originally Posted by SunnyDaisy View Post
    I was walking a little better this evening and took the garbage out. It is garbage night, so I had to take the can to the curb. The driveway was getting longer and longer as I pulled the can behind me (it is on wheels). Isn't it strange how a driveway, a hallway or a staircase can do that? It is like they stretch out away from you, so the more steps you take, the further away your goal seems.

    I didn't think I would make it back to the house, and then I went to get my dog out of the backyard and she ran off. She's a pug and cannot stay out in the snow, and may not find her way home. So I had to go get her. She was in the front yard, but when I finally got back inside the house I felt like I had walked across a mountain range!

    My girlfriend is going to come by after work and bring the garbage can back to the carport tomorrow. But, this is my responsibility. I have to find a way to get my chores done. People cannot be coming by after work to do my chores for me! They have their own chores!

    I have not been able to do anything more than the essentials since May. The house is starting to get, well...you just can't put off the deep cleaning for that long without some consequences. And now it is getting harder and harder to do the essentials. I told you about the laundry problem, but now there is also a dirty dish problem since I can't seem to stand at the sink longer than about 5 minutes. There are only 2 of us, but still.... I should change the sheets on my bed, but I am too tired. Everyday I consider it and decide to do it the next day. The clean sheets are still in the basement. There are too many things that are like this.

    Having a messy/dirty house makes me feel worse. If I can get a little bit done it lifts my mood, but then I can't walk. I feel like I am caught in a bind.

    I feel like my stamina is down to zero. I am trying to rest, eat healthy foods, get enough sleep, avoid stressing about things. I should be getting better, but I am not. How do people manage this?
    Sunny, take the garbage can out when you are the most energized. Same with bringing it back in. If you are lucky to have a friend who is willing to help you, accept the help (As long as you don't overburden the person. Most people are glad to feel that they can do something small that will really help somebody else. Buy or make her some small thing occasionally, if you can. For example, make a simple Thank You card & send it or give her flowers from your garden.) Is there a neighbor child that bring in your garbage can for 50 cents each time?

    Plan ahead to avoid any known pitfalls. Hypothetical example, if you bring your dog in from the back door, she won't be able to run away, but if you open the gate from outside to get her, she could slip out & run away. Moral - only bring her in from the back door. The point is that you have to plan everything ahead in detail to avoid problems.

    Pick ONE chore to tackle per day and rotate through them. If you feel pretty good one day, then maybe do two or three (but don't overdo). If you can only wash half the dishes & then the pain gets too bad, stop and lie down or do something else. If you feel better later, then do the rest. Use as few dishes as possible. I find that if I decide to tackle half a project, I feel like I have accomplished something and half done is better than none done. Decide that step 1 is to bring the sheets upstairs. Do step 2 later, which is to change the bed.

  10. #20

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