Other People

[Sue Stevenson]

I live with my partner and when I'm feeling bad I just crave being alone. I get so irritable and just feel like the only time I can really rest is when I'm totally alone.

Even if I was well I would crave solitude. I really do enjoy my own company.

But when I'm feeling bad, the need to get away from people makes me feel so sad. As if it's not isolating enough having this illness.

Do others feel this intense need to be alone, especially when you're tired-and-wired?

 

[bobby]

@Sue Stevenson yes, totally! sometimes having people just be somewhere else in the house is too much. I crave solitude too. I used to enjoy being on my own before I got sick, so I have no problems with it now.

what does make me sad sometimes is that I can't participate in anything when I really want to. I haven't been to a social/family gathering in years because it's too taxing and it takes weeks (or months) to get back to baseline. It makes me feel like I'm slowly disappearing, as if I don't really exist anymore.

that's why I like online forums etc. They make up for the lack of human connection in a way that is physically tolerable.

 

[San Diego]

Do others feel this intense need to be alone, especially when you're tired-and-wired?

Yes!!! I live alone and it makes it much easier. It was exhausting and humiliating when I felt like I had to explain my weird behaviors - like muting commercials, staying in bed most days, inability to shower as often as I’d like, etc. We just come across as lazy weirdos.

When my college kid comes home, I’m on edge the entire time. I have a wonderful relationship with her, and she’s really quiet, knows and respects how ill I am, but still - just the small normal noises feel like an assault. It’s so sad.

You are not alone!

 

[Veet]

I'm thankful that I've always tended toward introversion. I live in my own space now, shared w/ 2 cats. My personal interactions are extremely limited, and pretty much on my terms: 10 minutes is plenty. I've come to embrace invisibility.

 

[Sue Stevenson]

I wonder how extroverts cope with the aloneness. It must be extra excruciating for them.

@Who Me? Perfect - a convo across the miles with someone who knows you. This is where tech is so good for us. I hope you're not having (much) payback from it.

@bobby Wouldn't it be so good for our mental health to be able to actually schedule something each week? It would be nice to have it to look forward to

@San Diego Thanks for sharing this. It's such a disconnect knowing you have a good relationship and yet not being able to trust yourself in it. A real mind-mess.

I've told my partner lots of times when I've been really bad that I don't know if I can do this, etc. I daydream about living alone. I know if I was I would be miserable in a different way but it's so vulnerable being lile this. Like getting about in the street with your boobs hanging out.

@Veet there's somethung to be said for invisibility, right? I love having animals around. I don't have any pets but coax the cat that comes round to come in and hang ☺ We have lots of birds here and sometimes if I'm feeling really alienated it's a comfort when they talk to me when I give them seed.

This life is so weird, isn't it? It's like we're all buried under the soil while the world aboveground is ridiculously busy. Those two worlds together are a mindf**k.

Of course, I believe that we all sit here underground and one day the cure will come and we will burst through the soil and how we will appreciate bloody everything (especially breezes and sunlight)

 

[San Diego]

I wonder how extroverts cope with the aloneness. It must be extra excruciating for them.

I am one. Or at least I used to be.

The funny thing about chronic illness is that it changes our very essence. It doesn’t just take away the things we used to do, it takes away who we used to be. For me, that didn’t happen without a lot of kicking and screaming as I learned the hard way that only extreme pacing would keep me out of bedridden painful misery.

I am a completely different person. I miss me.

 

[madie]

I knew a woman years ago who was partnered, but they lived separately. That sounds perfect for me.

I do fine with occasional visits of up to 2 hours, but too much/too often and I get irritable. Which destroys relationships really fast, so I keep things short.

Kudos to you for keeping your partnership working! I literally don't know how you do it.

 

[Cort]

I think its a double-edged sword; the stimuli can be hard to take but it's really good to establish connections. I just met with my cousins over brunch. We talked for about an hour and a half - I left feeling like we'd had a good talk and were connected - but I was also really fried.

Sometimes just a quick conversation with someone really leaves me uplifted for a time but too much is too much.

 

[Sue Stevenson]

I've been thinking about what you said all day @San Diego. I miss me too.

I agree @Cort, the buzz and warmth from good connections is sooooo good. I love the feeling after I've caught up with one of the two friends I still have. It is surely an immune stimulant.

 

[Sue Stevenson]

@Who Me I hope you're feeling better today.

@madie that living separately sounds like a perfect partnership to me too. How do we do it? Well, we never shag. Extremely satisfying ... not.

 

[Tina]

I did not realize how introverted I was until I married a military man and moved and moved and moved. But I got used to it and learned to make friends quickly. I have always been on the more introverted side with strangers but I am one of nine kids and so I was always surrounded by a lot of family. I loved everything about it and I miss it terribly.

My kids were 5 and 7 when I became ill. I was able to lean on my military friend circle when I first became ill but once we moved to a new duty station I was too ill to make any new contacts.

I am very thankful for the internet and social media which allows me to keep up with family and friends but I sure do miss the real thing. AND I AM ETERNALLY THANKFUL FOR THIS SITE IN PARTICULAR for giving me the only group of people who have any idea how I feel.

Just like @San Diego I miss the old me.