I went on a bike ride with my daughter today. I don’t know why I try, really. It almost wears me out more than running. Almost. And it’s not the riding part that’s so hard. It’s the stopping and going. No wait, it’s just the going. Stopping is easy. Getting going again requires balance, which a normal, healthy human would probably not think twice about. But for me, the MS girl, it’s kind of problematic. I just don’t have the balance required to get it done without looking like a complete goofball. It’s fine when I catch myself, and better yet when I actually get moving again, but when I don’t? This kind of thing happens (I know it’s a little gory, and I apologize, sort of):
Ouchy-wah-wah is what we like to say around here. Yikes. And is it crazy that I didn’t realize the damage until AFTER we finished our shopping trip? I mean, a half hour later and a mile more of riding happened and I was completely oblivious to the bleeding. I had inspected the scrape right after it happened, but I guess I missed that upper part. I blame my right eye, it’s useless.
Of course now we are home and resting, and I cleaned up the wound and it hurts like the dickens. I’m pretty sure it was getting infected. Eeewww.
I might wait until I’ve built up my core strength a bit more before attempting another ride. Gotta stay safe!
“I have to walk down the aisle like I am balancing on a tightrope in a circus, look for what I need like I am looking for an abnormal tissue cell under a microscope”
Yes! This is so so ME! And meanwhile there are people waiting to get by or to get to where I’m standing and they don’t know why I’m taking so long and I feel pressured which makes the focusing even more impossible. This is also why I let people cut in line sometimes. At fast good restaurants, for example, while I’m straining to read the menu. I just don’t like making people wait on me.
I am still working on adjusting and adapting to vision loss. I’ll get there, eventually.
I went for my six-month follow-up with my neuro-ophthalmologist today (that was a lot of hyphenating lol). After reviewing the results of my Humphrey visual field test (flunked with flying colors, you could say), the standard “look straight into this bright light while I breathe loudly near your face” test, and chatting with me for a few minutes, he was ecstatic. Like, over the moon happy to see how well I was doing. He said my right eye had definitely improved. A small improvement, but it’s an improvement nonetheless. That’s the right direction to go, you know? He was very happy to hear that I was running, and feeling good. Maybe he could even sense from the way I was speaking to him that my cognition has improved? I’m definitely more “with it” than I was when I first came to his office in 2013. He even commented that my hearing was improving, even though that isn’t possible post cochlear surgery, but I took that to mean he could tell I was comprehending speech better than before. So yay!
When he walked me out to the receptionist’s office after our visit he stood there, looking at me and said, “Now, you promise to give that husband of yours a hug from me, won’t you? You promise??” (He loves Mike, keeps telling me he’s a good man, which of course I know, but it’s still nice to hear) And I said, yes of course, but I want a hug too. So I gave him a great big hug. Then he looked at me again with this stupidly proud, fatherly-type grin on his face, nodded a few times, sighed loudly, and then turned and walked away. It was the strangest interaction I’ve ever had with medical personnel, but it was beautiful. While I don’t feel a whole lot different than when I saw him six months ago, he sees progress, and that’s good news. Lord knows I’ve had my share of bad news, and I’m always down for some good stuff.
Oh, and to top all this off, the dog didn’t destroy the house while I was gone! I’ve been leaving her out of the crate while I’m gone, for an hour or two at a time. This was the longest I left her out, but she did great! Didn’t chew anything up, didn’t relieve herself in the house, and she seems even more super duper happy when I come home. Now if we can just get her to stop barking at all the neighbors walking by…
We have received all the tax documents we need (I believe), I am armed with my new typoscope (recommended for those with low vision), extra large magnifier (a gift from my big brother), and my reading lamp (a gift from my father-in-law). Tomorrow, in the light of day, I’ll be attempting to prepare our tax returns. All by myself, and I am Geeked. Yes, that’s Geeked with a capital G. You have no idea how much I miss this.
See, I don’t mention it much here on the blog, but I’m an accountant. Not a CPA, but I was working on that. My college degree is in accounting (though I don’t get much use out of it these days), and I was an IRS Enrolled Agent at the time I went on disability. Key word there is WAS. My enrollment eventually expired since I stopped working in the field. Former clients will occasionally ask me around this time of year if I’m preparing tax returns again, or if I plan to down the road. I don’t know. I would really love to. But I barely trust myself to do my own, so I can’t very well ask others to put their trust in me.
But we’ll see how this week goes with these new visual tools I’ve been given. I have no doubt they will help to relieve some of the strain on my eyes, but the accuracy of my data input remains to be seen. Of course I’ll have my husband or a friend double-check the numbers for me. Crossing my fingers that I get the numbers right, AND that we don’t owe this year!!
This is not to diminish the value of my friendships with real people, because I have a lot of pretty amazing friends, but by golly, I am really loving my crockpot this year (I’ve had it a whopping 16). The internet holds a wealth of information and ideas for what you can make in these things, and I’m finding plenty of healthy, tasty meals.
But here’s why I’m really learning to love the crockpot – it allows me to work around my fatigue and still manage to feed my family. The fatigue that MS causes has really been kicking my butt hard this past month, and by 1 pm (even after a morning nap) I’m pretty slogged (not sure if that’s a word but it sounded good). By 4 or 5 pm, after getting the kids from the bus stop and handling the flurry of that excitement, I’m close to non-functioning. Which makes dinner prep rather difficult.
Case in point: It is almost 7 pm. We ate dinner already (tacos!!) but I’m feeling the munchies so I went into the kitchen to get a bowl of cereal (granola, actually). I pulled the granola from the cupboard, the milk from the fridge, and set both on the counter. I then got a bowl and poured the granola into it, and proceeded to put both the granola back in the cupboard and the milk back in the fridge. Notice anything missing?? I walked all the way back to my bowl of granola, ready to eat, and discovered I had forgotten to pour the milk.
It’s really frustrating, feeling so… I don’t know, lacking in ability to perform simple tasks, I guess, and pretty damn powerless to change it. But I’ve been faced with lots of things, big things, that I cannot change. If I have learned anything from these big, unchangeable things, it’s that I do still have a choice. And that choice is to accept it, adapt, and move on.
The crockpot means I can prepare a delicious, healthy meal for my family early in the day, before I get fatigued. I refuse to give up and feed them frozen pizza every night. So, for what it represents and for what it allows me to do, the crockpot is my friend. The thing is old enough to drive now (a wedding gift), but I suppose using it for a ride to the store would be asking too much. We’ll just stick to food preparation for now 😉
Oh my goodness. This past weekend was a whirlwind. Lots of fun activities going on. I can’t quite process it all. In fact, it has sort of left me in a State of Funk. (Also, I just finished reading The Giver, so I’m tempted to capitalize the Common Words. My apologies. Do you accept my apology, Giver Fans?)
Anyhoo, Saturday we went to Luke’s soccer game, and Grandpa took us out for lunch after. Natalie was wanting to do something special with me, so we went to this local “paint your own pottery” place called Playing Picasso. We had so much fun! Natalie was ecstatic, and had so much fun that she has decided she would like to have her 7th birthday party there (because her 6th is already planned). Of course she only gets one birthday per year, so she has the next three all planned out. This year is laser tag, next year pottery painting, and the year after that roller skating. Well, at least we have time to plan lol. Anyway, I really liked this place, and I’m already thinking I would like to come back on my own and paint some stuff. Maybe I’ll even throw myself a party one of these times.
On a normal day, the pottery painting was A LOT of art for this girl here, but I didn’t stop there. No sirree, I had plans to go to Painting With a Twist with a friend that evening. This was a completely new experience for me, but I had heard from other people that it’s a lot of fun. They get 20 or so people set up at tables, with brushes and paint, and then an instructor guides everyone through painting a masterpiece. After 2 hours, you have 20 matching paintings (in theory) and they take a group photo while everyone stands proudly holding their finished paintings.
I was a little hesitant to do this, knowing I would have trouble seeing and hearing the instructor, but we had them place us right up front. This way we had a better chance at reading lips, and could readily ask questions as needed. I ended up asking a lot of questions, mostly relating to which color was which on my palette. My vision is bad, but not in the way most would think. I have a much smaller field of vision, but within that field I am able to see 20/20 with my left eye (20/40 with the right). Colors on the other hand, are hard to distinguish. So most of my questions were relating to the colors: which one is blue? Is this one green? Can you show me where I just painted the white circle? White on white is impossible for me to see, and that happened to be the first thing we did. Oh, I could have freaked out right there, but I decided not to. I was determined to have fun, no matter what, and that is exactly what I did. Even when I lost my balance trying to reach the top of my canvas and almost knocked over the entire effing table. Yes, I lost it. Fell right over onto the table. But I quickly recovered, exclaimed “oops, I forgot I have poor balance”, laughed at myself, and moved on.
At the end of the day, I went home with some fun memories and a painting that turned out to look pretty darn cool!
It may not seem like a big deal for most, but it was to me. I am still, two years later, adjusting to life with hearing and vision loss. I am almost daily faced with tasks that are new to me. New to the NEW Me, not the Old Me. And that can sometimes be a smidge frightening, but I am also daily making the decision to ignore that fear and just keep moving forward. Because today is a gift, and I refuse to waste it being afraid. Do you hear that? Life is a gift! Open that bad boy up!!
I may be deaf and half-blind, but I am and will always be… still Mindy