Musings of a Medical Zebra

Archive for the ‘EDS Stuff’ Category

Sleepy…

I have been so tired these past few days that I have barely been able to stay awake. This weekend we will be traveling a couple hours from here to see my husband’s family. I am hoping I will be able to stay awake long enough to visit. We’ll see.

Next week I meet with my pulmonologist to talk about the results of my sleep study. I cannot wait.

Dizziness

I’ve been having dizziness episodes lately. At the same time the dizziness kicks in, my feet and/or arms briefly go numb. It’s a strange feeling — quite disturbing. I hope it goes away soon.

Holiday Dread

All EDSers that are at least mildly dreading the upcoming holidays please raise your hands. Is your hand raised? Mine is.

I enjoy visiting with family and friends…when I’m feeling up to it. Lately — if you’ve been following my blog you already know this — I haven’t felt up to it very often.   For the past few months, about the only thing I’ve felt like doing is sleep. When I’m not sleeping, I spend the bulk of my time fighting sleep or trying to keep my mind off of sleep.

I am exhausted. I am dizzy. I am in pain. All of these things indicate that it isn’t in my best interest to ride 2.5 hours one way to visit as many people as we can in 24 hours just because it’s a holiday.

Ideally,  folks would come up here once in awhile — maybe not on an actual holiday, but sometime near a  holiday. Unfortunately, it’s hard enough to get some folks up here yearly, let alone twice in one year. Maybe someday…I can always hope…

Sleep…

I did a sleep study Sunday night through Monday. My sleep was repsentative of a typical night at home. Monday morning, they woke me up at 6:30am. Beginning at 8:30am, I took a series of five naps lasting 20 minutes each. Just as I would get comfortable, someone would walk in and wake me up. I wasn’t allowed to fall asleep in between naps; the naps were two hours apart. I was there until 4:30pm. I am glad it’s over and I’m looking forward to getting the results. I should hear something in the next few days.

I will be back…

soon. I haven’t been feeling well recently.  As a result, I’ve been doing a very poor job of keeping up with this blog. I will try to post an update in the next few days. Hope to see you then. 🙂

Exhausted

I’m exhausted.

Update

Much has happened since I last updated this. I went to Cincinnati to see an EDS specialist; I have a cardiologist; I started aquatic therapy; I have a copy of Dragon Naturally Speaking; I made two pies; Danny mowed the yard at least once; we visited our families twice; I ordered a couple pairs of shoes from zappos.com; and we’re awaiting a new dining room table from Pottery Barn.

I think I am most excited about the new table. It will be so nice to have enough room to seat more than four people. I am certain that Martha would be pleased as well. 🙂

Next to the table, starting aquatic therapy is relatively high on the list of exciting things since my last post.  I find it exciting because it’s  an opportunity to get stronger, and relieve some pain in the process.  Unfortunately, it’s going to take a fair amount of time before I feel some pain relief. While I’m excited about it on one hand, it’s hard for me to stay motivated on the other.  This is unusual for me. Typically I’m highly motivated, even when the task doesn’t directly benefit me.

In this particular case, the task — therapy — seems to be having a negative effect. I realize this is likely temporary, but the pain in my back has increased to a level I’d call severe.  I just want it to go away, as it is stressful and exhausting. Regardless of the pain it causes and/or my level of motivation, I will stick with it. I can’t be sure of its effectiveness otherwise. Wish me luck. 🙂

OT

I was released from occupational therapy today. I wish I had been released because I made significant progress — or any progress for that matter. My hands are still quite painful — I’ve lost most of the muscle in them (atrophy). I  have tendonitis in my wrists, forearms, and my right shoulder. I’m going to continue with my exercises.  Hopefully, with time, I will make some progress.

In the next couple of days, my TENS will arrive. It should help me to deal with the pain — in my hands and elsewhere in my body. Yay!! 🙂

Time to start listening

Today it occurred to me that I push myself way too much. It’s imperative that I slow down and start saying no — no to myself and no to others.

When asked if I can do something, I generally say yes. When there is something that I feel needs to be done around the house, again, I generally say yes. And when there is something I want to do, I also say yes.  I expect my body to perform as it did several years ago — to do the types of things someone my age “should” be able to do. Even though fatigue and pain serve as constant reminders to pace myself or avoid a particular task entirely, I often do not listen.

I realize now that I have to stop being so stubborn and start listening to my body. That’s exactly what I’m going to do. It won’t be easy, but most things worth doing aren’t easy.

May is EDS Awareness Month

Tomorrow kicks off EDS awareness month in Illinois. Hooray for awareness!

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