Feeling the love

People need others in their lives. They need contact and community. That's one reason this lockdown has been so hard for so many. 

For seniors it has cut them off from their visitors. For children they haven't been able to just "go outside and play with their friends". But for many of those with chronic illnesses their lack of contact and connection with others in person hasn’t changed at all. They are the “millions missing”. I’m very grateful not to be included in that group.

I may be missing from work and from the earning economy. But I’m not missing out in life and love.

I often think what it would be like to be in quarantine all alone, or in a small apartment without nature around me. To not have a partner of any kind to comfort me in times of stress. Or the reward that comes with being there mentally and emotionally for others that you love.

But I do have these things and more. I have a son who loves me enough to keep away from his girlfriend during this risky time. I have a mother to cook delicious meals, buy me every kind of face mask to try and keep me safe and comfortable and cool, comfortable clothes to ease the heat.

Everywhere I look in my house I feel love. I remember trips we took, or fun moments captures in photos hung gallery style in every nook and cranny. I see flowers and veggies growing so fast they seem magical that we planted. I’m literally surrounded by love. And that makes me feel like one of the very fortunate few.

Scary morning choke

I was writing a long post about ways to take care of my body when I realized what I really wanted to talk about what how I scared the shit out of myself this morning.

Let me back up...

I pride myself in being able to swallow a lot of pills at once. It's stupid. I'm not into self deprecation typically, but come on. That's a stupid thing to be proud of. So I don't do it at night when my muscles are a bit weaker, but first thing in the morning is usually fine. Except for this morning. I popped all eleven pills of varying sizes into my mouth along with a lot of water. ELEVEN pills!

Well, the next thing I know one of the smaller buggers is lodged firmly in my windpipe. I feel the horrible familiar feeling and a wash of fear and panic comes over me. Lucky for me everything else went down the right way. I immediately lean over my bed and give a strong cough. It didn't come right out, instead disintegrating enough to go up my nose and out a little bit, but I could still feel some in my wind pipe. 

I think it was an Aleve pain pill because it burned like a mo-fo all through my nose and down. As soon as I'd cleared what I could out I knew I had to stop the burning. I poured myself a big glass of unsweetened soymilk and added about a tablespoon of honey to it. It felt lovely going down my burning mouth and in the back of my throat.

Next I sat naked in my hot shower on my lovely shower stool and coughed up as much as I could. I also vacillated between self flagellation about taking so many pills at once and being kind and loving to myself about how scary an experience it was.

With fear comes change...

I've resolved to take my pills 1-2 at a time like a normal human earthling should. I also want to take them in the same room as another person when I can. It was scary to know I could have choked to death in the bedroom without anyone in my house even knowing. It was a bit of a wakeup call to take my condition more seriously. With each cough in the shower I could feel my lungs getting more and more fatigued. 

I also had a lot of gratitude that I didn't die. Life is so fragile and it only takes one mistake to end it all. I've had many moments like that to be grateful for. It can be easy to see the hardships and miss sight of the blessings. I feel blessed today that I didn't die.

The week of May 11th, 2020 in Pictures

Why I love my wheelchair

I used to feel bad for people "in a wheelchair". When I was a healthy, able bodied person I had that common thought that people were "confined to" or "trapped by" their chairs. But as my mobility and strength worsened and I had to start to use mobility aides myself, I began to realize what I think all disabled people already knew all along. None of these tools are traps. None of them are confining or something to be pitied. For me they all represent freedom. Especially my wheelchair.

My mother was commenting the other day how I've always done things fast. Walk fast, eat fast, finish tasks fast, clean fast... That's very true. My son and I both walk very fast and have very long legs. My husband (whose the shortest one in the family) was constantly struggling to keep up. Until my mobility became a challenge. Then of course everyone was waiting on me. My chair gave me back that sense of freedom and independence, but it also gave me something else. SPEED!

I didn't even realize "going fast" was at all something I was missing. My husband will confirm that I used to not enjoy going for walks because it was too slow of a mode of transportation for me. I still remember the first time I sat in my chair and zipped down the street that thrill that I had in my chest. It was the same feeling as a little kid zooming downhill on their bike. And every time I'm alone and get to go fast in my chair out in nature I feel that same thrill.

For me my chair means independence. It's a physical extension of my body. It's nothing I'm "confined to" but rather something I'm fortunate to have! That's also why I like to name my mobility tools. Because to me they're much more than tools. They're blessings.

Animal Crossing - A disabled person's best friend

I've been a fan of Nintendo's Animal Crossing game series since its release on the N64 in 2001. I've recently fallen back in love with their phone app game called Animal Crossing Pocket Camp. But here's why the entire game series is so important to me as a disabled, creative, nature loving person. 

Firstly you have to understand that my reality is one of constant, chronic pain, limited mobility, foggy headedness, vertigo, crippling fatigue and other challenges. 100% the opposite to what this game offers me AND it's a great drug-free escape from pain. 

So let me break down the specifics of exactly what I love about Animal Crossing.

1: I can play with and visit my husband. He has an avatar in the game and even when he's in the other room (one bonus of quarantine) working I can visit him in his garden, his campsite anytime I want. Where else could we pop up side by side and go fishing together? Not the real world, that's for sure.

2: I make friends instantly. You literally go up to someone, ask if they'll be your friend and if they accept then your avatars are friends. You can help each other out and be rewarded by your friendships too! The more friends you have the easier the game (just like real life, but... EASIER!)

3: My entire town is there ready to be explored with the movement of my finger. No spoons required. Mining, walking on a beach, exploring an island, fishing under a waterfall... all right there! I also have a big campground that I can decorate, a two story camper that I can decorate and a two story cabin that... well... you get the idea, right? 

4: I can fish, literally walk barefoot, farm a perfect (weed-free) garden, build a library, dress my animal friends, plant and grow flowers, rearrange furniture. I can catch bugs or hear the sand squash under my feet. None of these things are possible for me in the real world, but I get a sense of joy and satisfaction out of doing it through my avatar and in game. 

5: I can express my creativity in new ways that I can't do in real life. For example, this is the bottom floor of my camper. It's a sewing room! I'd love to be a fashion designer in real life or at least sew all kinds of things for my home, myself and my family. But in the game I can at least have a cool fashion/sewing room full of colorful things.

For me this game isn't just a time filler, or brain suck like some people consider them to be. It fills an urge to go camp in nature, to just hang out with my "friends" and to build and create new things. These are things that are either very hard or impossible for me to do in the real world.

There is a new Animal Crossing game out for a system I don't own. I won't be getting it right now due to cost. For me this little pocket size world on my phone is the perfect outlet. 

Food! Bon Appetite! Get Yo Grub On!

My husband and I are trying to stick more to a Mediterranean style of eating. Heavy on the seafood and veggie, light on the sugar and carbs. Our doctor whole heartedly encourages this and also recommended low salt. Although I don't really want to live forever, I would be happy with less pain, less inflammation and a little less body bulk to heave around. 

I went to our local Trader Joe's with my Mama on Monday. It was the first time I'd been since the quarantine. It felt really good to be able to pick out food for my family myself. That's something I had really been missing.

Here's a small sampling of what we've been enjoying.

Kale and broccoli salad on the left with hot sauce. I learned hot sauce takes away the overly "earthy" flavor that can come from kale. Then some soybean noodles (shockingly good!) with sautéed onions and a little mozzarella cheese. 

Top left is Huli Huli chicken with brown rice. My husband cut it up for me. We had it with a spring mix salad. Top right is the same kale broccoli slaw with my favorite fish - smoked trout! My puppy enjoys the skins too. Bottom left is brown rice with sautéed onions and eggs. I adore eggs and can eat them daily! I had that with avocado and a Honeycrisp apple.

My husband sweetly peels and slices apples for me and knows I like to have them with dinner. Honeycrisp is my favorite. High protein high fat works best for my body. Hence the egg and avocado. Springing for good eggs makes me feel good ethically and it also tastes much better than factory eggs. 

You can see it's not super complicated or expensive. We've been picking up restaurant food once a week both to support our local businesses, but also to give ourselves a break from cooking. Then my Mama also likes to feed us once a week or so. Though I tend to have coffee and lunch with her multiple days a week as well. 

Food is the center of our social world and I'm no different. In fact, food is quite important to me emotionally. It's something I'm constantly working on.