alone…

I have always loved the sound of nothing. The audible noiselessness of an empty room.

Living in a house with three other adults and a crazy dog, I don’t experience it often. Ever, actually. So you can imagine my excitement when I offered to spend last week housesitting for my sister. A whole week of just me, a quiet house, and yes, a dog, albeit a perfectly sane and mostly silent dog.  At home, I don’t leave my bedroom without wearing a bra and pants. So, I was especially looking forward to doing the no-pants dance while the boobies swang free. Ladies, I know you feel me.

My sister offered to purchase my plane ticket, and in exchange I would spend time daily with my mom, work from my sister’s house, and trade my snuggle time with this guy:

 

for snuggle time with this guy:

 

I haven’t been alone for more than one night in almost a decade, and have never lived alone with postural orthostatic tachycardia syndrome (POTS), so I didn’t know what to expect with a whole week on my own.

From the beginning, it was clear it was going to be a difficult week. I was in the desert and temperatures were approaching (and reached by the end of the week) the triple digit mark. I tend to be sensitive to tap water, even from cities with the cleanest water. My digestive system just isn’t familiar with it, and I quickly discovered the tap water in the desert was no exception. After a night or two of getting sick, I became pretty dehydrated. People with POTS have low blood volume and have to drink lots of fluids. Trying to replenish from dehydration is a non-stop game of catch-up.

I had to double, and some days triple the amount of beta blocker I took to make it through the day on two feet. My sister’s house is gorgeous and is only a couple years old, and thank god it is because I had to sit on the floor of the shower. And not just on the short shower bench to shave my legs, like I do at home, but full on “ten minutes of bare ass on floor” kind of shower. Bleeding out on a shower floor when no one could come to my rescue for over a week isn’t how I want to go out.

I want to go out surrounded by cute dogs and lots of beer.

My week long experiment helped me appreciate everything the BF does for me. Because when you live alone, and you’re symptomatic and sick, you still have to pick up bottled water from the store to combat your dehydration.  You still have to cook dinner, and wash the dishes, and take the dog out, and run errands for your mom. It doesn’t matter if you’re lightheaded, weak, or nauseous. And when you wake up in the middle of the night with chest pain and a racing heart, or wake up vomiting the night before your flight home, only you can reassure yourself it will all be okay.

Suddenly the palpitations you get that you don’t think twice about when you’re home sitting next to a loved one in bed become terrifying. It’s ridiculous, but there’s something comforting about knowing someone is there.

And when you’re alone, every palpitation and dizzied step and shooting pain makes you realize that there’s no one there if you fall and there’s no one there if you can’t get up and there’s no one there if you need to go to the hospital and

there’s
simply
no one
there.

Friends, if you have someone in your life that IS there, whose presence means you don’t have to do everything on your own, who you appreciate in more ways than you can express, tell them. Hug them. Blow them.

Just kidding, any relatives that are reading this.

Overall, I’m glad I went. It was an insanely busy trip, and I did enjoy not wearing any pants, drinking straight from the bottle, watching a sappy chick flick, and peeing with the door open. I was able to see friends, and spend memorable time with my mom.  That time with her is worth any hardship it took to get there.

There was a time when living alone was liberating. When it was invigorating and challenging and the only time I felt truly relaxed. Now it’s scary, and not just because I wasn’t wearing any pants. Chronically ill friends that live alone, I have so much respect for you. It’s hard. It’s really hard.

So, friends in southern California, here’s the deal: If you have a chronic illness (I don’t care which one) and you live alone (or live with someone that doesn’t understand), send me an email at Lindsay@dysautonomiac.com. Let me give you my #, so that you always have someone you can call /text when you need help. I can’t guarantee that I will always be available, but if I am, I can bring you water, or play with your dog, or take you to the hospital, or play with your dog, or sit in the other room in case you fall during your shower. Or play with your dog. You don’t even have to put on a bra.

No one should feel scared to be alone.

“Having someone help you doesn’t mean you failed. It just means you’re not in it alone.” – Unknown

Smell ya later.
– Linds

9 Replies to “alone…

  1. I’m scared being alone.
    I’m alone while hubby is at work, but he could be home in about 15 mins. Or to the grocery store.
    I even get et nervous then.
    I’m scared to be alone, it’s better since we got a dog.

  2. I don’t think most people realize how hard it is to be chronically ill and live alone. Having lived alone for the entire 23 year duration of my illness I’ve called my own ambulance at 2am, have spent 4 years crawling to the kitchen for a drink only to be too weak to stand up to reach the fridge when I got there, have lain in a bath too weak to get out but knowing no-one was coming to rescue me then when I did manage to get out passing out on the bathroom floor, having to somehow get yourself to doctor’s appointments, having seizures and anaphylaxis with no-one there to monitor your condition………….and 1001 other scary situations.

    But not only that – it’s knowing that you have to do every single little thing, no matter how sick or weak you are. If you don’t make a meal you don’t eat. If you don’t put the bins out they’re not emptied. If you don’t find a plumber to fix your boiler you have no heating or hot water. I’ve even had to run my home from a hospital bed as there was no-one else to do it. It’s a huge burden of responsibility for someone who’s ill.

    I miss just being held and reassured more than anything – we all need that sometimes. Jak x

    1. i actually thought about you a lot, jak, during my week alone, because i know you go through that every day of your life. you amaze me. i wish we lived closer (like even on the same continent 🙂 so I could help out.

      1. I wish we lived closer too – not so you could help out but so we could meet for a cuppa and a natter which would be brilliant! 🙂

  3. Oh Lindsay!! You’re just IT!!! There’s no one like you. There’s no one who GETS IT like you do! And now you know how I felt for a few years when if people didn’t bring me food I didn’t eat. And the Fresno weather of triple digits for about 2 months straight. No one else gets it unless you live it.

    Glad you’re home, now go take care of the BF…LOL I am going to have to pre-read these before I read them to Andrew because I almost choked 🙂

    Love you so much!
    Stace

  4. Hi Linds, wow this post! You are a trooper doing a week like that on your own. It’s exactly how you explain it…the anxiety when we are alone with the same symptoms we get when someone is with us, makes it that so much scarier. I have to use my xanax at these times quite often. I’m home alone a few days a week when hubby is at work and kids at school and it makes me anxious at various stages. I make sure I’ve got food, water and electrolytes (and xanax haha) at these times, and my phone comes with me to every room, including the loo!

    So I’m wanting to know how you went flying? Especially on the way home when you were worse symptoms wise? Is it your first flight post pots? I’ve read some people pass out or get this awful heaviness from a vasovagal response to the drastic change in air pressure. I’m worried as I get vasovagal overshoots and pre syncope but also air hunger where I feel like there’s not enough oxygen in the room so I’m worried that will be worse on a flight. So you get any of this with your pots? I’m due to fly for the first time post pots, after Christmas.

  5. Hi Linds, I hope this work as I just finished a long reply to post and I don’t know where it went. If it shows up you’ll know why i have done 2 comments haha

    I just wanted to say how brave you are for doing this. Firstly I’m afraid to fly since pots. How did that go?…especially on the way home since you were not the best? Do you ever suffer air hunger, like there room does t have enough oxygen? I get this often lately and it worries me that it might be worse on a plane!

    I get exactly the same when I’m home alone, which is a few times a week. I make sure I have my food, water, electrolytes and xanax handy for the panic when the symptoms get bad (which I don’t need when someone is home as I’m not as anxious about being alone even though I get the same symptoms!). I don’t know how people with this cope with living alone, they are real troopers! It’s sad aswell that this illness does all this 🙁

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