Loneliness ...how do u cope

[Inca]

I used to be achingly agonisingly lonely. Not now. I have one long distance close friendship and know a few other folk... It is enough. And is about what I can give now. Rather than what I need. My physical contacts with folk are almost non existent and that is fine. But at nearly 80 years old it is different for me. And I chose to live on a small island with a tiny population. Just me and my cats ... it is enough.

I can cope most of the time. I have one sibling and as long as I know he's ok and still alive and busy with his life I just get on doing what I can. I do worry how I'd cope if anything happened to him as he is my 'emergency back up' as I have no local friends, the community is not close (or doesn't include me). He doesn't have a partner at the minute who may continue to help me if he got ill or died. I did like his last gf and we had a few good times throughout the pandemic, ..though it always took me days to recover!..but sadly I guess they wanted different things and I haven't heard from her since.

It's frustrating as it takes me so long to 'bond' with people due to the autism then seems just as I'm getting used to them and enjoying their company they disappear and I never hear from them again, making me less likely to want to want to have to go through all that again! I just don't seem to have the energy.

 

[Inca]

(my brother sent me a one page article from a magazine. In an envelop! I intend to read it...but the font is sure small and the paper is shiny. My brother has no idea I am in such a state as this...not a clue).

Do you have a smartphone or iPad? Take a photo of the article then you can simply zoom in on your device to magnify the text to read. You can also reverse the colours on most smart devices giving a black background instead.

 

[Inca]

I wish I knew how. I have been coping badly. I had always been introverted and required a lot of time alone, and I am grateful that I previously had that disposition. I was no stranger to being alone with my thoughts. With that said, this level of isolation has been completely heart breaking for me. I rarely ever see any friends in person, and cannot do video chat or talk on the phone. I do have a couple close friends that I text with when I feel up to it, but I also feel myself drifting away from them. It is hard to feel connected to them when they are young and healthy and I am confined to a bed. Although they are understanding, they do not truly understand. I feel like the loneliness has gotten harder to cope with over time, rather than easier. In the beginning, I viewed my illness like a forced isolation that I needed to experience to grow and now my mind is screaming - ENOUGH, please get me the hell out of this situation! I miss being apart of the world and nature and occasionally isolating on my own terms.

I am incredibly grateful that I live with my mom and my dog. I sometimes have long periods where I am too sick to speak to my mom. She has always been one of my best friends, and we would have deep conversations about life, death, all things in between. Now my ability to communicate and cognitive issues make it hard for me to even have in depth conversations at all. I have days it is a struggle to even say I want a glass of water. Due to thieeven having someone in my home hasn’t cured the loneliness.

Things that have helped me a bit are sites like this, the Mighty and other chronic illness groups. I have been looking for pen pals, but it is likely a hard sell when I say I am bedridden, cannot meet up, cannot talk on the phone or video chat. I wonder if some people question that I am even real. I once posted a thread about pen pals to an ME page and there were crickets. Not sure if no one wants a pen pal anymore or if we’re all just too exhausted to answer.

My heart goes out to you.

I am in a similar situation but live only with my dog and struggle with face to face interaction as also have hearing/speech difficulties ..so like trying to lip-read strangers over videophone is difficult as my connection is slow so there's a lot of lag.

I used to haveonline penpal and we only communicated via writing as she was in South Africa and had a language processing issue so speech was hard for her to follow too. People are more wary now I guess as there's many more scams on the internet and what they call 'cat fishing' or something??

You're welcome to send me a private message on here.

 

[Emmarose47]

Hi mushroombutts
Thank u for sharing your experience s on this topic ...
It's Def hard .
Ys agree forums and online a life line .
What is the mighty ?

I'm grateful I go through longer spells of acceptance and being in this experience than not . Although when the ' I can't live like this comes it's like a tidal wave and I can feel so angry, frustrated and despairing , alone .

I'm going to be moving soon and poss losing the links I have here in the community ( or maybe not who knows ..
I trust it will be for my greater good what ever is coming good and the tricky .
The garden and shed house have been a life saver for me so I'm offering everything up to the big man to meet this need somehow .

Pen pal arrr I remember those ...
Quite a thing in the 80s / 90s .
I remember I had a girl who I met on holiday and we penpaled . She was in the UK too but different part and it felt like she was the other side of the world
Also used to send letters back and forth to my cousin in London and in my late teens / early 20s 2 friends .
Letters are great can express, share, little creative bits anything that can go in an envelope .

I'd be happy to Pen pal with u
It would be fun ....

Best wishes
Emma

 

[Amy522]

I am sorry you are struggling with this. I know a lot of us lose friendships over the illness and it's one of many heartbreaking losses we have to process alone.

When I was very severe, I was too ill to ruminate on the issue of loneliness. It was all about survival, which meant focusing all my strength on little steps to ensure I live another day.

When I improved a bit, I wanted more. Though, as many likely can relate, I wanted to bite off more chunk of life than my body could handle.
This split between mental and emotional needs versus physical ailment continues to be difficult to handle. It's like trying to compromise between living authentically (my past self) and living in a guarded, disciplined way that isn't compatible with my aspirations and personality.

That said, there are things that without fail help me reconnect with the world around me, put my issues into perspective and support me in holding on to my identity and self-worth:

• being outside (even just sitting on the balcony, watering plants, watching people walk their dogs) - also cuddling animals
• adding some creative movement to my routine (even if bedridden, moving arms and legs rhythmically puts my mind at easy-though it does the opposite for my pots)
• connecting with stories about marginalized people through history - fiction and nonfiction (I like to read about others who lived unusual lives at the fringe of society. Both exceptionally gifted people, like scientists and writers, and regular people. I often resonate with their thoughts and while it sounds absurd, these stories often give me hope and strength)
• Working (within my limits. Being able to contribute to a larger project and earning my own money give me a glimpse of my former life)
• Learning new skills (knitting, pilates, art, instruments)
• Giving back (I donate a bit of what I make to a charity that helps abused animals. I also bake birthday cakes for family members and friends)
• Joining interest-based groups (like a book club) and taking low effort online courses can be a great way to chat with people and maybe even form friendships. Sometimes I listen in on free Zoom webinars in topics related to my job. It keeps me connected to my work field.

I know it's not ideal to be alone. But it doesn't mean this will always be your life. And it is possible to experience joy outside of mainstream life. I wish you well!

 

[Rufous McKinney]

we only communicated via writing as she was in South Africa

In the Dept. of Coincidences, my pen pal as a child was in South Africa...(I think it was via Scouts that we had these pen pals in exotic places).

 

[Inca]

In the Dept. of Coincidences, my pen pal as a child was in South Africa...(I think it was via Scouts that we had these pen pals in exotic places).

I met her as an adult ..was about 5 years ago now so probably not the same person!

 

[MushroomButts]

hugs....from afar....(from wherever to wherever..)

I love your avatar, @MushroomButts (is there a story behind your name?)

altho I cannot entirely see what all the details there are...in the image. What is on the balance scales?

ME has taken much of my desire and ability to hold a pen! Typing is some how easier...seeing the screen is easier...

I suppose some threads around here has a bit of a Pen Pal quality. Altho It is fun to get something in the mail, and the exotic stamp...

(my brother sent me a one page article from a magazine. In an envelop! I intend to read it...but the font is sure small and the paper is shiny. My brother has no idea I am in such a state as this...not a clue).

Hello there!

I can’t say there is any great significance to my name other than making me smile. I have a fondness for mushrooms, butts and mushrooms that look like butts.

My avatar is a snapshot from one of my favorite shows of all time - The Midnight Gospel. It is an animated series based off of Duncan Trussel’s podcast and discusses esoteric/spiritual concepts, death, etc. The image comes from episode 5: Annihilation of Joy. To make a long story semi-short, it follows characters that are in a “soul prison” suffering from existential dread. The character goes through rapid series of death and rebirth, and at the end of each “life” is faced by two divine beings that weigh his heart (soul) against the weight of a feather. Although the episode mostly follows concepts of Buddhism and Hinduism, the concept of weighing the soul against a feather is said to be a reference from the Egyptian book of the dead where the soul’s heart is weighed against the “feather of truth”.

Someone used the snapshot from the episode and made it into a tarot card (traditional tarot has a judgement card in each deck). I posted the full photo if it is easier to see that way.

For a multitude of reasons, the image and that episode called to me, and at its most basic level reminds me of balance. Something I am always trying to figure out living with chronic illness.

I have found it really interesting to hear what forms of communication are easier for people. I have lost my ability to write much or color recently, and I can better read paper text than phone screens. My photophobia is too severe to use a computer, because even the lowest light level is painful for me. I liked someone else’s idea on here of taking a picture of the magazine article to read on your phone.

Most of my friends/family have no idea what state I am in either. Somewhere along the way, I decided I no longer had the energy to explain, and had to pick a few people to try my best to keep in contact with.

sending hugs from afar *

 

[MushroomButts]

Hi mushroombutts
Thank u for sharing your experience s on this topic ...
It's Def hard .
Ys agree forums and online a life line .
What is the mighty ?

I'm grateful I go through longer spells of acceptance and being in this experience than not . Although when the ' I can't live like this comes it's like a tidal wave and I can feel so angry, frustrated and despairing , alone .

I'm going to be moving soon and poss losing the links I have here in the community ( or maybe not who knows ..
I trust it will be for my greater good what ever is coming good and the tricky .
The garden and shed house have been a life saver for me so I'm offering everything up to the big man to meet this need somehow .

Pen pal arrr I remember those ...
Quite a thing in the 80s / 90s .
I remember I had a girl who I met on holiday and we penpaled . She was in the UK too but different part and it felt like she was the other side of the world
Also used to send letters back and forth to my cousin in London and in my late teens / early 20s 2 friends .
Letters are great can express, share, little creative bits anything that can go in an envelope .

I'd be happy to Pen pal with u
It would be fun ....

Best wishes
Emma

Hello Emma,

I too go through longer spells of acceptance than not, which I am grateful for. I was quite good, even before getting sick, at appreciating the little things. I remember how grateful I was the last time I was able to sit outside for 5 or 10 minutes or have an actual live conversation with a friend. Days, weeks, months without seeing the sun when all I can do is lay in a bed with my head covered has ground me down a little. I am incredibly grateful that I’ve felt well enough recently to join this forum! I am no stranger to the ‘I can’t live like this’ tidal wave and it usually comes when I’m too sick to reach out, so that is sometimes hard. My heart goes out to you and it is good to know we aren’t alone in feeling alone.

The Mighty is essentially a social media for the chronically ill and their caregivers. There are various groups that you can join that are illness or topic specific. I have gotten a lot out of the conquer your mind group, since I am always seeking new ways to cope. It’s mostly a place to get/give support and talk to others. I have found it to be a fairly kind space as far as social media is concerned.

I hope that your move serves you well and you are able to maintain contact with your current community and add some new connections where you are going. I will be rooting for you from afar!

I would be happy to chat more and be online pen pals. Although it is easier for me to read/write on paper, I am not able to get to my mailbox yet. Feel free to send me a message on here if you’d like

 

[Inca]

I have found it really interesting to hear what forms of communication are easier for people. I have lost my ability to write much or color recently, and I can better read paper text than phone screens. My photophobia is too severe to use a computer, because even the lowest light level is painful for me. I liked someone else’s idea on here of taking a picture of the magazine article to read on your phone.

That was me I think. Do you know you can invert colours on the screen and have a black background instead? ...smartphones have it too..called 'Dark Mode' I think?

I have hearing/speech impairments too and find reading/typing much quicker. I do have assistive programs on my laptop and iPad though to speed up replies...one virtual button = preset sentences/longer explanations etc ..They can also speak them out loud for me.

Lip-reading gets exhausting fast as its's all on me to guess the actual words then the meaning and context! ..and when you're already exhausted before you even start it's a struggle to even get your brain into gear to make intelligent guesses! ..People have no idea!..
'well you can lip-read...what's the problem? ..is what I usually get! << no idea if thats the 'tired'emoji.. looks like its yawning..

 

[Inca]

Is this 'The Mighty' page you are talking about? @MushroomButts

https://themighty.com/

Is it a forum like this or like video/phone chat like iMessage/FB chat apps?

 

[Rufous McKinney]

the image and that episode called to me,

very interesting, thanks for posting the larger image, I see now its a tarot card....oh thats a heart! oh thats a feather!

I had an intense dream this morning, very unusual for me. And was clearly existential dread was involved...and this illness. preventing me from "escaping a big city"..full of people who are not helping me, and I am on my own....having to save myself. Instead I woke up....not saved.