dragging butt, and processing

    • Anonymous
      October 20, 2008 at 10:38 am

      I apparently did too much again. I don’t like that I have to think this way.

      I went to the gym (Curves) on saturday, then did a bit of shopping and a little bit of yard clean up at a friends house that was being roofed. I sat and crocheted through the afternoon and went for a walk just before sundown.

      During my walk I may have had a small seizure. I noticed at one point that I didn’t know where I was. I quickly recovered my place on the earth, as I was with a friend so that helped frame of reference. The next thing i noticed was that I couldn’t feel my arms at all and I felt light headed and like i was swerving down the road. I stopped walking and told my friend, then continued with her assistance, holding my arm , back to her house.

      Getting back to the house I inhaled a banana, grapes and cheese, lots of water and a small brownie, eating like it was my job. Eventually, my body settled, though even after all the snack eating I was still hungry for two servings of dinner 30 minutes later.

      The day ended with quiet conversation and watching SNL and laughing.

      Yesterday, I went to church (had problems kneeling, right adductors were not working well.) and then to the pool for abt 20-25 min. of swimming and walking. Stopped swimming and switched to walking as coordination for breathing wasn’t going too well and had a few too many mouthfuls of water. Got some lunch, and went back to friends house as hubby was helping to finish up roofing. Dozed in a chair, had and early sunday dinner (helped prep), and left.

      Rested a bit when I got home and then fixed my weed wacker and went out and clean up what had been a neglected garden. Came inside with very weak arms and rested again. Noticed the pumpkin I had purchased a couple of weeks ago was going bad, to salvaged the best of it and cooked it up. Today it’s waiting in the pan on the back of the stove to be pureed and frozen.

      My nights rest was very interrupted with muscle fascilations, joint and muscle pain also, bladder in spasm so up urinating through the night. Woke early with eye muscles not wanting to allow me to see easily, and much pain. Have taken tramadol , been massaged by hubby and brought breakfast in bed.

      Finally it’s 10:30 am and I am ready to face the day!
      Wish I didn’t get weak, and could follow through on tasks started.
      Doing much better cognitively and can follow through on thoughts better.
      Balance is consistantly better, and strength still fluctuating.

      I felt very whiney and discouraged when I started typing.
      Now feeling blessed for what I can do.
      Glad for this site, it’s members and being able to process.

      Have a great day everyone!

    • Anonymous
      October 20, 2008 at 11:23 am


      It is VERY functional to vent. You get to release frustrations that are very real. You get to talk with us, who understand where you are and who have lived through many of the same issues. You have to release these emotions and feelings, otherwise they lead to additional stress, and additional stress can lead to a downturn in condition.

      In the same manner, one of the things I had to accomplish in my life was to accept the fact that there were some limitation on what I could do. The easiest way for me to figure it out was how I felt the next day. If I felt crappy for two or three days, then I knew I did too much. If it was one day, then maybe just a little extra rest would help me recover, and so on.

      One easy way to think of it is to think about your family. If you did 15 things yesterday and feel crappy today. Rest and recover. Then try 10 things. If you are still OK, try 11 things. The main point is that you are so valuable if you are functional, but not so much if you are down. If you do less, you can do more because you are not down in between. If you followed that.

      It was hard to accept my condition. But once I did, it freed me up because I devoted less resources to wondering about the CIDP.

      Good Luck

    • Anonymous
      October 20, 2008 at 12:17 pm

      You have said everything I need to hear so clearly!

      I do tend to get upset and into a spiraling stress cycle. I’m coming into that as one of my “healthy realizations”. I looking at how I forgive myself from the act of blaming myself for having been ill and recovering. And, I’m asking for God’s help for understanding.

      I’m working on being a real human being when i had always prided myself on being a human doing.

      I appreciate your description of how to decode the problem of how much is too much. I would really rather have no down days, though even my healthiest of friends need time for rest quiet and regrouping. I like thinking of setting healthy limits to minimize the slam of quiet time. I’d rather have my quiet time be by choice than force.

      I have spent the past 17 months of ivig treatment not dealing with my “condition”, but rather how to get out of it. I’m realizing that I have a new lifestyle and it can be very enjoyable. The choice is mine.

      Thanks again! Erin

    • Anonymous
      October 20, 2008 at 1:38 pm

      Hi Erin!

      I’m exhausted reading all that you did this weekend:) And I’m not saying it to make fun! Dick is correct in what he says about not overdoing. I have spent MANY, MANY days waiting for improvement, waiting to get better, not making plans until things change. Well, hooey, that is all out the door. My very dear friend said to start planning each day as I am right now and if I get better, that’s a plus, if this is the new me, I will have started dealing with right then and there. And it has worked for me mentally. I still am frustrated at times with only being able to do one activity for the day, when I used to do 10. But you know what? Tomorrow still comes, and some of those “things” were just not that important in the grand scheme of things! You will be fine! And swim some laps for me:))) Gabrielle

    • Anonymous
      October 20, 2008 at 7:23 pm

      Erin, Wow!! Your nickname should be Energizer Bunny!!!:D You have me tired just reading all that you have done-But I can’t blame you at all, I do the same;) Please take care of your body’s needs. Take care.

    • Anonymous
      October 20, 2008 at 8:06 pm

      Hi Erin! I wished I had that kind of energy! Ever since my back surgery in May and then the recent surgery on my thyroid. I am just in the beginning stages of doing things, but I am so slow and dragging butt doing them! I get tired really fast and then can’t function. I’m trying but it’s hard. Have seen those over-do it days and then I pay the price after doing them.
      But I sure would love to have one of those weekends like you just had! LOL! Maybe then, some things would get done.
      I feel like a turtle in my house and used to be Speedy Gonzalez. Not any more! Rest and don’t over push! Hugs

    • October 28, 2008 at 8:27 am

      Erin, WOW! You are the energizer bunny. It is hard having limitations when we’re used to a high level of activity.

      I cleaned up the garage, worked on my outdoor kitchen, and pulled weeds in the yard this last weekend and I’m paying for it now. My legs are so sore and stiff from the weed pulling. I got light headed a few times too and had to sit down a few times and rest (it was 89 degrees F and the sun was hot). I keep re-learning that I can’t do all the things I used to the way I used to do them. I have to slow down and listen to my body. 🙁

      You didn’t say what happened to your pumpkin though. Did you get it in the freezer? (One of my favorites is pumpkin pie and I don’t think I can bear it if your pumpkin was wasted). 😀

      Thank you for sharing…


    • Anonymous
      October 28, 2008 at 11:04 am

      Hi Gary O,
      the pumpkin did get cooked and pureed. I have 3(2 cup ) bags for amking 3 pies in my freezer.
      It was a small pumpkin, so I need to get another one.
      I also have a small hubbard squash on the porch to process and abt 3 lbs of rosehips to make into jelly.

      I think I’m may have cracked the code for morning seizures! Or atleast I’m very hopeful. Last night I took my one rozerem for sleep along with 75 mg lyrica and 1 mg ativan. I am alao doing my daily B-12 shots before bed when I’m not feeling rushed like I need to it it in. I slept through the night and woke feeling energetic and rested.

      Today is an ivig day. I have made some dog chew toys for my church fair, and now the premeds are kicking in, o it’s naptime.

      I’m very hopeful that this new night time med system will make a huge difference