So my physical therapist comes over yesterday...very sweet young lady named Katie. She knew I haven't been feeling well, so she just brought some handouts to go over on energy conservation. Oh.My.Goodness. I was like, seriously?? You want me to what?
For example, one of them is to place a folding chair in my mudroom, so that when I have to do laundry, I can sit down, and load it into the washer from a sitting position. Then, I can take the chair out again to transfer the clothes from the washer to the dryer, taking the clothes out of the dryer, and folding them in the other room, sitting again. All I could think of is, "Do you know how LONG that will take?"
Another one was to avoid bending at the waist. I'm like, well, I can't squat because my muscles will give out and I'll never get back up, so how am I supposed to pick things up? Use a grabber. Hmmm....That part I think I could do.
How do you completely rewire your brain? I am and always have been a Type A, faster is better, work harder, be-productive-keep-moving-kind-of-person. In elementary school, my favorite thing on the planet was timed tests in math. The more pressure to be fast, the better I performed. Same with my career before I had to quit. The faster I worked, the faster the work got done, the faster the trucks got out, the faster they got back, etc.
So now, I have to do just the opposite. Even when I feel GOOD, I'm supposed to work like a 90 year old so that I have the energy to do what I WANT to do...like play with Jacob, or bake or whatever. It' stunningly difficult to reconfigure thoughts that are in your hard drive, so to speak. How does one go about changing their personality? (Without mind altering drugs....I DO have responsibilities, you know...)
But that's what's so frustrating about this dang disease. Every single day is different. I never know how much change I will wake up with. So physical therapy has to vary each day dependent upon what I can do.
It was actually nice to hear the P.T. say "If I had a patient with MS, I couldn't make them WORSE by exercising. You, I could make WORSE by exercising!" It's like, FINALLY a medical professional gets it. I have heard SO MANY TIMES (even from my closest loved ones. And I mean closest.) "If you would just try harder. Just exercise a little bit. If you dropped some weight, you know that would help."
You know what? I DO try. If I didn't TRY, and WORK at what I do, I'd be freakin' dead. As in, no longer on this planet. Try harder. Kiss my arse. YOU deal with what I have to deal with for ONE blankin' day and tell me to try harder. I had a CHILD for sh!t's sake. But I don't work at things if they're hard. Right.
And you know what else? I'd LOVE to exercise. I'd REALLY love to swim. But, oh yeah, there's just that one little thing that stops me...perhaps the flippin' HOLE IN MY NECK that would cause me to DROWN?
And yes, I completely agree with you that if I did lose weight it would probably help my overall health. I know it would. Now you just tell my body that: even though you take anti-depressants, insulin and birth control, and you can't exercise, you just drop some pounds."
Yup. I'll get right on that.
Anywho...yeah. Little sore spot there.
So anyway. I'm feeling a little better, but I brought Jacob to Shawn's this morning and it wiped me out! Resting the rest of the day after I get the bills and budget done.
Fighting this disease called Myasthenia Gravis (MG) with a little humor, some good friends, and a lot of help from Above.
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6 comments:
It must be so good to know your therapist understands what's best for you! Now you just need to forget those judgmental comments from others! I visit your blog from the sits girls site (Giraffe tribe) and always find it inspiring! Blessings!
I still love that you have some awesome doctors :) I'm giving a new one a shot on Monday, so we'll see - but really, I just need her to a) agree with me about my drug regimen and b) be there if I chop off my leg in a freak accident or something.
I tend to always go all out with my hospital visits, hence b. Like one time...I just stopped breathing. Yea, I'm that good. (I was like 11 with bronchitis and knew I was sick but didn't want to go to the doctor...go figure.)
Just dragging that chair around from room to room would wear me out!!
Glad to here your feeling better. It's always wonderful when you meet people who "get" MG an what it does to your strength.
I like her ideas but better yet, hire a maid. LOL
I am so glad your therapist gets it! She has some interesting ideas on energy conservation. It does sound like it will take extra time, but I hope it helps!
Kerri,
I so hear you! I just got out of the hospital and it was so hard to explain that while I was a fall risk when I got there, after my treatment I was perfectly capable of getting to the bathroom by myself the next day and that if I couldn't use my legs again I would page them...no go...the bed alarm stayed on the whole time! Urgh! I hope you are having an okay day today. I am thinking of you.
Jen
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