Today has not been a day lived with hope. It has been a day filled with angst. Yesterday I shared my post on moving and letting go of Purple Moose in its current form. The response was very positive and I felt good about it. Today someone shared the Zillow post for my house complete with pictures to my FB timeline. Suddenly I felt uncomfortable. I tried to hide the post unsuccessfully. Of course I am too much of a people pleaser to delete it. I know she meant well. But there it was. Every corner of my house exposed to see. Yikes!
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My cat appears to hate coffee. Hard to believe, I know, but I only recently started drinking it, so it's relatively new to our home. One morning I awoke to hear Milo scratching at papers on top of my printer that lives at the back of my tabletop desk. Milo! What the heck are you doing? I finally figured out he was trying to cover the offending empty mug I had left there the day before. Good grief! This pattern was to be repeated every day that I forget and left an empty mug on the desk. If Milo was lucky, he would also step on the power button and the printer would whir to life with a series of noises that only a warming up printer can deliver. His favorite time to do this is at about 5:30 in the morning. You would think I'd learn to clean up after myself a little better after being repeatedly woken up at that hour. I blame the MS brain fog.
It's been a rough week. It held one of those moments that make you want to crawl under the covers and stay. And that is exactly what I did...for about 23 hours. But as I lay there in bed at about hour 22, I had to ask myself. So, what are you going to do? Stay in bed from now on? I'd been knocked down before. Was this a choice I really wanted to make? I decided to get up.
Disappointment can be awful. Especially when life takes away something important we thought we had in control. Our reactions usually begin with strong emotions. But at some point there comes a moment when we have to realize we do have a choice in our response. A moment when we choose to live in the misery life has offered us, or to take a step away from it, or push through it to the other side. I bet my doctor thinks I'm stalking him. Seriously. Apparently, I've got this Wash, Rinse and Repeat mindset with my health. Yet another month and I'm spending another Saturday night in the DHMC emergency room. I'm getting good at it. I have charged batteries, the computer, change for the vending machine, and a foot with toes that look like little sausages. Fortunately, it is warm so I can rock my Vera Bradley flip flops. Well, at least on my one foot. I do have a slip on sneaker on the other one. And I have a matching pair of the mismatched shoes in my backpack. The good news? We now know it is not related to my TM or MS. It is a Gout like condition. (you've "gout" to be kidding me....) Hydroxyapitite crystal disease, to be exact. Just another Latin phrase for my collection. Fortunately, it is treatable, but it still hurts like a son of a snickerdoodle. (My kid friendly curse word.) I think Lilly thinks they are dog treat "Snausages". She keeps licking my toes as if she thinks they look tasty. Good grief! (Do they still make those? I can still hear the crazy voice from the commercial saying it in my head.)
No one gets sick alone. We are each a part of a vast network of family, friends and humanity in ways that only George Bailey truly understands. Our lives have a ripple effect that moves forward throughout our individual webs.
One of the hardest parts of a chronic illness is seeing the pain my illness can cause a loved one. It can come in many forms. The look away when a friend sees me for the first time walking with a cane or walker. The flinch of disappointment when I turn down an offer to go out again. Sometimes it comes disguised as being super positive, such as when someone tells me insistently that they know someone who has this same condition and they are fine. The truth is maybe the person you know really is fine, or maybe they look fine, but don't feel it. Regardless, it's evident in your concern that the thought of me not being OK is something you really don't want to think about. ![]() The problem with feeling good is that when the inevitable bad days come, it breaks your heart a little. I think I've accepted my new circumstances. Then, I feel better. As I've said before, feeling better is a tease. It is a glimmer of what was. This whisper of hope that maybe, just maybe life can return to a more normal state. And when you have more than one day in a row like that, it only strengthens the delusion. I spent the last two days with an odd sense of restlessness. I felt better. What was I doing at home? I want to rejoin people and purpose. And then without warning, I curled up on the bed today at noon time. I slept for an hour and a half. When I awoke I made myself some soup hoping that we restart my inner engine. Instead, I curled up again and slept for another 2 hours. Ugh. Doesn't this disease understand that I like things to be predictable. I'll agree to be sick, but I'd like to know when it is going to happen, I just want to be able to plan around it. Is that so much to ask??....Yeah, I guess it is.
![]() There is a picture circulating on social media of a 3D perspective picture that completely changes when your perspective changes. It's by Patrick Hughes at the Birmingham Art Gallery. Google Superduperperspective and you can see the video for yourself. It's pretty amazing. From one angle the picture jumps out at you with a pyramid of images. Then as you move to to the right or left suddenly it recesses back with corridors moving away from you. It's really astounding. It is a visual example of how much difference perspective can make in life. I spent MLK weekend in the hospital again, Optic Neuritis was the latest Latin name to be added to my string of words that now shape my life. Basically inflammation of the optic nerve was distorting my vision, making it blurred and giving me headaches. Now, when you are an avid reader like myself, not being able to read is a stab to the soul of who I am. Not to mention, the ability to read is an integral part of day to day living from paying bills, to reading mail or a recipe. Fortunately, I am a good enough reader that I could read a text or FB post if it was brief by looking at it and quickly reading the sentence as a whole, or most of it at once. I could type because my fingers pretty much knew where to go, but proofreading? Ha! And a full page of any text was a blur of frustration. |
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