Our Old Man Riley

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Like Lassie, our Riley communicates quite skillfully with a range of different barks. A few months ago, he came to me at the dining table with his stern, urgent bark. I looked around for Penny, knowing he was tattling on his sister. He used to do this with Bowie, too. “Is she downstairs getting into treats?” I asked him. That’s where I’d found her one day, head buried in a Greenies bag. As I went down the stairs, Riley’s barks got more insistent: Mama, wrong way. I looked back up the stairs at him. He stamped his feet with intent, faced the back door, barked more urgently. He might as well have pointed. I went back up, looked outside, and there was Penny on the porch, standing amidst scattered recycling, snout-deep in an empty dog food can.

He has another bark for person at the gate and another for stinging insect in the house and for dinner is late and for I’m too arthritic to play with these dogs, so I’m just going to yell at them for an hour.

Riley is the house manager. He likes to lie in the open front door, where he can keep an eye on the street, the garden and inside the house, too. In the winter, when I insist on a closed door, he’ll lie on the porch outside, but only if he can see me through the window. If I go out of sight, he’ll nose his way inside to make sure I’m okay, first looking upstairs, then the basement, staying with me until I am back by the window so he can return to the porch and continue his vigil.

He gets up in the morning with my husband, the early bird, sees him off to work and then, by 9am, he comes carefully clicking through the dark bedroom to rouse me for breakfast. I listen to his slow ricochet off of walls and furniture corners, as he navigates to the far side of the room, where his nose finds my face. At night, he puts my husband to bed, too, and then re-emerges a few hours later to escort me upstairs.

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He protects his siblings, protesting loudly if anyone picks up Penny’s paws for clipping or cleaning or threatens her with a coat. He shoves his way in between us, offers up himself, instead. Take me. He did the same thing with Bowie, yelling at me if I tried to brush Bowie’s teeth or perform a rectal grass extraction. Except when Bowie was dying – Riley didn’t make a peep as I changed doggy diapers and forced endless pills down Bowie’s throat.

Riley is my self-appointed emotional support animal. When I’m talking to someone, he lies beside me on the couch, one paw on my arm, and if he hears emotion of any kind — annoyance, laughter, sadness — he’ll repeatedly claw at me. Stay cool, Mama. If I become more animated or raise my voice, he will clamber on top of me, put his weight on me, shield me, distract me. And, if all else fails, he turns into the court jester in the middle of the living room, the dancing frog from those cartoons: Look over here! See what I’m doing? 🎶 Hello, my baby…🎶

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Yesterday was his 11th adoptiversary. My husband ran into a woman at the park who said Rally (his name at the time) needed a foster family. We took him in and, after 3 other forever-homes fell through and we were gutted each time he left, we copped on that he was meant to be ours. We were meant to be his. He’s about 12 or 13 years old now. He came to us emaciated, with half a tail, already arthritic, even as a kid. He almost died from giardia, swelled up from wasp stings, lost a toe and a bunch of teeth – and none of it ever slowed him down.

But this year, he’s suddenly old. Cataract-y eyes, rickety bones, staring at walls… And I’m thinking of what it’ll be like to not have him taking naps with me or lying outside my shower… How quiet it’ll be with no warnings of stranger danger or bad insects or Penny mischief. I’m reminding him more than ever how much he’s loved, how, even with the endless lint rolling and daily hoovering, we have cherished every hour of the last 4,016 days with him. And how incredibly fortunate we are to be the ones who get to accompany him through however many days remain.

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A LOVE LETTER TO MY FRIENDS… By Lindsay

See this here? <– It’s a blog post I wrote in November, 2012 which my friend Lindsay liked. Lindsay writes Musings of a Dysautonomiac and I don’t even know how she found my blog. That was in its infancy, when I was just venting to the universe because I didn’t know what else to do with myself, before I even knew what dysautonomia was. That’s 5 years of her friendship and, like so many others I’ve met through this blog and its associated Facebook account, I treasure our relationship. I rely on her/their humour, honesty and nonjudgmental support. She wrote a love letter to her friends and expressed everything I feel better than I could have, so I’m sharing it here. And, in case you’re too lazy to click on the link, I will copy it below.

A LOVE LETTER TO MY FRIENDS…

Growing up, most of my friends were boys. I was into riding bikes and playing video games, and most other girls were not. As I entered my teens and 20’s my closest friends were female, but the majority of my friends were still males. Generally, I always felt that I got along better with men.

While that’s probably true, as I entered my 30’s I began to realize that I get along best with kind, brilliant, funny, drama-free women. In short, You.

Yes, you, reading this. YOU. (Apologies to the, like, 4 men who read this blog. I think you’re swell, too).

I have lost friends since I first became sick. Some were “party” friends, who didn’t have much use for me after I stopped going out as often, and some were needy friends who didn’t like that I now had problems of my own to solve. Some were just friends, and I don’t know why. I usually lose a “friend” or two everytime I post something about postural orthostatic tachycardia syndrome (POTS), dysautonomia, mast cell (MCAD), or chronic illness in general, on Facebook, which I do about twice a year. Apparently I’m not allowed to post occasionally about a lifelong life-altering illness, but am expected to “like” the 5 posts about a friend’s kid who has the flu.

I have gained friends, too, through support groups and this blog. Some live in my city, and others live in other states and countries spread throughout the world, friends who I have never, and unfortunately due to our illnesses probably will never meet in person. There’s a kinship in mutual suffering; we fight different battles in the same war. I save every email I have received through this blog. That perfect strangers share their fears, their vulnerabilities, their hopes, and their stories with me is incredibly humbling. We are unlikely friends, brought together by circumstance, but held together by compassion and understanding.

A friend recently got married, and while we were discussing the wedding plans over a drink, she asked what she could do to make it easier for me to attend. At that wedding, friends sat and stared at the ocean for over an hour with me, as I was moving pretty slow after three migraine days that week. For my birthday last week, chronically ill friends whom I have never met sent birthday messages. And not just “hey, happy birthday” messages, but touching messages that remind me that, although we have never been face to face, I have still been seen.

Chronic illness is hard on friendships. As a whole, we aren’t the most reliable bunch. We get sick and miss important events, even after promising we’d be there. Due to brain fog, we may forget important details you have told us. We probably aren’t going to join you for a hike, or a late night party, or skydiving, or standing in line at the grocery store. You’ll have to help us, from time to time. We may not make the best bridesmaids, godmothers to your kids, or workout partners. Somedays, we may not even make that great of a friend.

But I promise you this: we will never take you for granted. Because we know what it’s like to be left behind.

Friends, thank you for letting me share my life with you here. For letting me be this confused, existential mess, and for responding with softness and acceptance and dirty jokes and “we’ll figure this out togethers”. For remaining my friend through it all, or for sending me an email through this blog and planting the seeds of friendship.

I will continue to strive to be worthy of your friendship.

“In the end, all you have are memories, and usually the ones you have with friends are the ones you treasure most.” – Notes from the Universe

Smell ya later.
Linds

Communication Breakdown

There was a point in my climb up the career ladder that I started talking about “the email problem.” At the time, most of my job was spent “in the field” — opening restaurants, traveling from store to store, hiring, training and meeting with employees. As my shifts were mostly on the floor, observing restaurant operations, the email problem grew and grew and I would spend all of my “downtime” trying to catch up. I never sat in front of a TV or ate a meal without my laptop, I stopped reading books. Eventually, I was in an office full-time and I still could not get on top of the computer work, even being at a desk all day. This was before I had a blog and blog comments to answer or Facebook messenger or WhatsApp. This was before I knew that Facebook groups existed, before I had cultivated friendships with 100% online communication. And this was before I got sick and wanted to ingest every bit of information that might help me. I have saved, bookmarked and sent hundreds of articles, educational videos and podcasts to myself, in different places, on different devices. I have 50K+ emails that I want to deal with, but I’ve compartmentalized them into some dark room in my mind so I can function. It’s now an “information problem” or a “communication problem.” It’s unmanageable. But I do it to myself.

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My personal gmail accoount.

I’ve always had a methodical way about how I tackle life. I like to do things in order, finish them and file them away. When I haven’t dealt with something, it becomes a small weight in my mind and, though I may look as if it’s not bothering me, it is. They are. They’re heavy. My husband is the complete opposite. He can’t understand why the ripening tomatillos and our over-burdened plum tree stress me out. He has no problem with piles of disorganised paperwork and chaotic junk drawers all over the house. If he doesn’t answer emails, it doesn’t weigh on him. Come to think of it, that’s another thing that drops little lead pellets in my brain: messages that I’ve sent that don’t get replies. They don’t weigh as much as emails I haven’t answered, but they still take up room at the back of my mind. I like discourse: unfinished conversations nag at me, even if those “conversations” are links I send my husband in a PM. A month later, I’ll say, “Did you see that video? You never mentioned it.” God, my skull is full of thousands of ball bearings. No wonder my neck always hurts.

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I often wonder how I would handle this illness if I were more like my husband. He is a content person. That sentence sums up our greatest difference. He is content with our home, with his routine, with his simple diet. He is content with his body, with his habits (good and bad), with his legacy, or lack thereof. The truth is, the only things my husband wants to change are things that I tell him need to be changed for my happiness.  I have never been content with anything, ever, never. My need to experience… it’s like a rabid, ravenous hunger. New places, new people, new information. It’s like a constant electric current that makes contentment the least accessible state of being imaginable. When I’m at home, I want to be on the road or on a plane. When I’m traveling, I long for my garden haven. I ruminate on the past and worry about the impact I will have made on the world when I’m gone. I’m critical of my body and chastise myself for my bad habits. I want to watch every movie and TV show, I worry about all of the wonderful music I am missing, I collect hundreds of books that I never read. I WANT ALL THE FOOD.

More and more, I realise that this fundamental trait is the reason I don’t sleep. Every night, I put it off to do/read/watch one more thing. Every morning, I can’t wait to get up and tackle things, even if that “tackling” is lying on my back in a dark room, looking at my phone. It doesn’t matter if I wake at 6am or 11am, as soon as I am conscious, my brain is like a bullet train. A bullet train that can repeatedly dichotomize and travel down dozens of branching tracks with the same enthusiasm… but they all fall off the a cliff after a very short journey. Because that’s the real problem. This year, my worst symptoms by far are from the shoulders up. There’s still a lot going on in my body as a whole, but the truly limiting factor is my brain. I don’t have enough hours of neurological clarity to manage 1/10th… no, 1/50th, maybe less… of what I want to and what I used to. That is now my true disability.

Recently, I’ve had a few people ask how I am because I haven’t written much lately. The short answer is I’m okay. There’s so much I want to write about, I simply stopped writing. Mostly because I know if I hit that cognitive wall while writing, I won’t be able to manage anything else, like preparing food. Also, when I gained some ground, it quickly got filled with doing more chores for myself to alleviate my husband and tackling my to-do list. I read all messages and emails (for the most part), even if I am remiss in replying. I promise you, all contact touches me deeply and adds fuel to my tank. It is never not appreciated on a very conscious level. So, bear with me and, if you can tune into your psychic abilities, you’ll hear me sending my love to each of you and we’ll never feel out of touch.

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My Funny Valentine

As a Valentine’s Day present to my husband, I decided to get marginally dressed again. I put on a bra and a red dress. Unfortunately, the dress, although clean, hadn’t been worn in a while and it smelled musty, so I switched to a pink sweater (pink and red are really living on the cutting edge of colour for me; they scream: I’m dressed up! I’m making an effort! ~ 90% of my wardrobe is black and grey) and leggings that have pockets and corduroy-type ribbing, so they give the impression that they are more civilised than mere cotton leggings. And I put on my new boots. I won’t take a picture every time I put boots on, I swear, but I never thought there would be a pair of flat boots that I liked and, more importantly, were proportional to my munchkin frame.

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Unfortunately, after two changes of clothes, my battery is almost dead and I’m dizzy and incredibly drained. I woke up feeling okay, excited that I wasn’t feeling evilly ill, but how dare I pull on leggings that take a bit more effort than PJs and bend down to put on boots rather than slip my feet into slippers? It was too much and it’s only 11am. I know I will be wiped out when my husband gets home.

The entire plan was: get dressed, brush hair and maybe put on make-up. Although, all my make-up is 2+ years old and putting it on means holding my arms up in front of my face, which is a lot of energy, and it also means having to take it off. Exhausting. I wracked my brain to think if there was something I could do to surprise him. Cook dinner? No way. Clean the house ~ or even just the sitting room? Nope. Buy a present? Too late to do it online and I wouldn’t know what to get, anyway. And we’re trying to conserve our savings. So, I think my present is going to be yet another card thanking him for saving my life every day (because, make no mistake, I would be in a very different predicament without him) and wearing clothes that kind of fit me.

The funny thing about my husband is, he would never notice what I’m wearing. I could be sitting on the couch in a ball gown and he wouldn’t bat an eye. I kind of love that about him. I certainly never have to feel self-conscious about looking slovenly. He tells me I’m beautiful even on my sickest days. Love is blind.

One of the most distressing symptoms over the last year is hair loss. Never could I have predicted that I would be upset about my hair. I don’t really like hair. I’ve always preferred men with shaved heads and, half the time when I’m talking to people, I’m thinking about how much I want to tuck their hair behind their ears or put their hair in a ponytail. I find it distracting (and kind of gross) that every woman on tv has what I call “hair curtains”. Long waves down the sides of their face that are pulled forward so they have this weird part in the back of their head and no hair down their back.

Hair curtains.

Hair curtains.

Weird back of head.

Weird back of head.

So, what do I care if I have less hair? Well, my hair loss makes me look even more sickly because it is concentrated in the front and on top. You can see my scalp too much and there are clumps of short hairs that are either breaking off or just won’t grow any longer. I was on a Facebook group and someone mentioned that, because she was in the military and constantly wore her hair in a bun, she was going bald on the top of her head, so she cut her hair short. Light bulb! I’ve worn my hair up every day for the last 17 months that I’ve been housebound. So, I’m cutting it short. I’ve had my hair very short before, so it’s not a big deal, but I do have a few concerns: 1) I can’t dye my hair now, so there is a lot of grey. I’m not sure how I’ll like short greying hair. 2) I can’t wash my hair very often and, when it’s dirty, it’s nice to be able to put on a hat and still have the illusion of clean from the long hair coming out below the hat. 3) You can put long hair up in such a way that it gives the illusion of being more “dressed up”. But none of these things will sway me because I have to wear a CPAP! The headgear on a CPAP mask is hell with long hair and is undoubtedly contributing to the hair loss.

My sister’s hair stylist is going to make a house call, bless her heart. I wish I had longer, lovelier hair and I could donate it like Marie did, but I just don’t have the patience to grow it. The point of all this is to say that I guarantee my husband doesn’t even notice when I cut my hair. I have left the house with long blond hair and come back with a dark brown bob and, even when prompted, he couldn’t figure out what was different. When he met me, my hair was very short and fiery red. He’s pretty much seen it all. Luckily, days before I met him he had shaved off his long hippy hair. I sometimes wonder if I would have fallen for him if he had a ponytail. Probably. Love is blind.

Happy Valentine’s Day.

1998

1998

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