Loneliness ...how do u cope

[Emmarose47]

Hi
I know loneliness can and is a major thing for us ... How ever I've never seen a post on it on PR ?
I've posted before on the struggle of being lonely and housebound . Peop have spoken about the activities they use to distract themselves .
What do people do to help the loneliness ? Can we survive so cut off from society .. is it possible ..
Or can loneliness actually cause a broken heart and kill us .
I've heard some say they don't actually mind being cut off I can't understand this for myself .
I have online and phone connections . V limited in having visitors due to PEM . I darent go into the community for risk of PEM . .

 

[Treeman]

Hi. I spend the majority of my time listening to the radio. I also watch box sets and lots of sports, I'm presently watching rugby league.

I'm fortunate that I have my wife and daughter at home, but rarely see anyone apart from the neighbors over the garden fence.

I also have a motor scooter that I can get out on for an hour's ride around my city. I try to do this at least once a week. During the summer I meet up with local scooter clubs, but keep a low profile to save energy.

 

[Emmarose47]

Ye people seem to survive better with family / partner around ...

 

[Alvin2]

Its not easy to handle.
I have library of TV shows and movies though i can only watch reruns, not the vast library of new stuff.

Having a pattern helps, some goals and aims even if you can't achieve them.
Hobbies help too.

I spend a lot of time thinking, about how things work, how to solve problems, solving things. I have enough to keep me occupied for a few lifetimes though i don't have the ability to put much of it into practice. I have lots if interests so that helps, form renewable energy to construction to psychology to materials science to economics and more.

When i have functioning i work on my website since i have so much experience in this area.
https://disabledincanada.wordpress.com/

Some of my favourite websites:
https://electrek.co/
https://cleantechnica.com/
https://slate.com/
https://www.vox.com/
https://www.askamanager.org/
https://budgetlightforum.com/
https://lifehacker.com/

I started an article on how to handle the loneliness but have not got far on it, if i can i will try to write it.

 

[Emmarose47]

Thanks Alvin ... And people do u have any humans around ?

 

[Rufous McKinney]

We all differ, we are all in different places our differing progression in Life.

I"m married, my husband is eight years older, and I"m very grateful to have him here.

He can still go out, but has mobility issues. Can't hardly walk very far. Then me, having to not stand for very long. What a pair. He will do an errand for me, and will bring me food and dispensary items. I'm so very lucky.

I'd be unfathomly lonely, if he wasn't here.

But let me be clear that mostly he is reading all day or snoring or leaving or avoiding me. Overlapping is sort of rare. We don't do any traditional stuff. We are nothing like "normals". He isn't somebody who checks your bedside, and adjusts your pillows. We are in very different mental spaces, and I cannot rely upon him for alot of my personal Propping Up.

I don't see anyone, friend wise, it seems any longer and really don't know how to resume my prior life which all came down Dec 2017.

I don't really want to travel any longer, even if I could, because the ecosystem is damaged. This means that I will look out the window, and not approve of what I'm seeing.

So, I stay home.

Three "possible" friends are within 4 blocks of here. And apparently I'll be never seeing them. I directly invited one person over, and they did not take me up on the offer. Ok. How do you not take that personally?

My best friend at work, is dealing with Non Hodgkins, and more or less sent out an email called: I'm busy, don't bother me. Wow, I thought I:d see this person often but instead its zero? And four years later?

Mostly its grieving of it, because so much is over.

Its my daughter that sustains my life. I live vicarious thru her. At least she is having a decent life. She is happy, she is well, My granddaughter is perfect.

I cannot even fathom how I"d feel if my daughter wasn't around.

 

[Rufous McKinney]

I have lots if interests so that helps, form renewable energy to construction to psychology to materials science to economics and more.

I think this capacity really helps endure the isolation.

If your a very curious person, and have lots of eclectic interests, well you can do alot of personal self-Lifting.

**
I've got long lists of topics I"m simply fascinated by, and will dip into whenever I can manage to squeeze that in, in between my primary assignment- stay fed. Wash those dishes. Stay fed. Wash the same dishes, yet again.

I need to add: fight back more. Sigh

 

[Rufous McKinney]

When i have functioning i work on my website since i have so much experience in this area.
https://disabledincanada.wordpress.com/

Oh, I checked out your site, Good for You! very nice! Helping others. kudos.

 

[Alvin2]

Oh, I checked out your site, Good for You! very nice! Helping others. kudos.

Thanks

 

[hmnr asg]

I think if you are severe the best option is to have a few friends that can come over once in a while. I live with my partner who doesnt have CFS and its really hard sometimes. The arguments wipe me out and im constantly reminder of what a failure as a partner i am.
Also, my partner just wants to add more and more responsibilities to our lives. She brought a cat, now wants to bring a dog (and even one day wants a horse!). She is not at fault, i just think if you are severe, it may be best to be single.
I know the loneliness can be scary but im not sure which is worse, getting more severe or dealing with loneliness.
If I end up being single again, I think i would fill my time with radio and podcasts. TV is too hard for me and reading is out of the question. Also, if my gf ends up taking our cat, I will adopt an older cat from the shelter.

 

[SickOfSickness]

I think it's good to have some face-to-face contact when possible. Could be just few minutes speaking to a neighbor or delivery person.

And to have more voice contact. Better if possible to do with video (Zoom, Facetime, etc). Voice contact could be Skyping or calling another ill person just for a short time, or longer if you can handle.

I think that other live video where you don't have to interact but have the option could be good. For example live streams on Twitch where you could stay quiet if you want, or just type a message occasionally if you want, or speak.

 

[Rufous McKinney]

It is amazing we have so many varied means of contacting others, due to social media etc. We are very lucky in that regard. There simply was NOT all this entertainment, back in the day. You could decide to give yourself five PHds by simply watching You Tube videos. Eventually- there is the official expert on the oldest Archeological site in the northern hemisphere....you almost just as smart!

Or, you can Skype someone. I must admit the video chat with my brother's family being together in the kitchen was in fact ALMOST as good as a real visit.

 

[hapl808]

And to have more voice contact. Better if possible to do with video (Zoom, Facetime, etc). Voice contact could be Skyping or calling another ill person just for a short time, or longer if you can handle.

I like video, but find it tires me out much more quickly than Skyping. So I'm a bit torn on the best answer as I'd usually rather talk for longer on audio than much shorter on video. But I usually do a bit of both, depending on the person.

 

[Mouse girl]

Since my dad died and i moved, I've been horrifically lonely. It's very hard if you don't have family. Or at least it is for me. I've been in chat rooms and support groups but it's not enough. For me, i need someone who has some investment or care if i'm here or not, you know? Facebook just makes me feel more lonely as I like real life face to face stuff. With my dad it was great, because we would chat about stuff but also have time alone and we got along as i respected that it was his house and that he was helping me and I was very grateful for that. Last two years have been the worst as my home made me feel connected to my parents and friends and pets as all my memories were there and the trees and area felt like friends and community even if they didn't "talk" with me. Now, i'm just in desolation with few contacts at all but trying to keep going and do the best i can one day at a time. Loneliness has always been the hardest aspect of this illness for me. Just losing so many friends and not being able to make friends so easily or real ones, even though i've never had trouble making friends, the illness just makes things hard.

 

[RYO]

I find classical music very helpful when I am not in PEM/crash. I have trained myself near bedtime to listen to soothing relaxing sleep music. It helps me help me fall asleep quicker. I wish there was a therapy dog service for disabled people who can not take care of a dog or cat.

 

[RYO]

My favorite classical music compilation
https://tidal.com/album/174413024

Soothing sleep music

 

[Inca]

Hi
I know loneliness can and is a major thing for us ... How ever I've never seen a post on it on PR ?
I've posted before on the struggle of being lonely and housebound . Peop have spoken about the activities they use to distract themselves .
What do people do to help the loneliness ? Can we survive so cut off from society .. is it possible ..
Or can loneliness actually cause a broken heart and kill us .
I've heard some say they don't actually mind being cut off I can't understand this for myself .
I have online and phone connections . V limited in having visitors due to PEM . I darent go into the community for risk of PEM . .

Hi..I live on my own...well...no other humans...just me and my dog! I have autism too and have always had a strong dislike of intimate physical contact so have never been able to cope with the idea of a partner and kids (am ok with the dog wanting a cuddle!) but still it makes me feel a little sad that I have 'no friends' as like yourself the PEM is crippling after visits and socialisation or any necessary medical appointment I'm forced to attend.

I did cope better when I was younger and did initially achieve college, university and work.. but had parental support but sadly they had both passed from cancer before my first major 'attack' that left me wheelchair-bound (and bedbound for a while).

Due to being CEV too I was unable for the last friend I did have (who still visited) to visit me for 2 years and she seems to have ended the friendship (found out on FB that I'm apparently officially no longer her best friend ) so gave upon friendships altogether given that I'm unable to cope with most 'normal friends' social needs.

I have been feeling the loneliness more as I got older, maybe as my understanding and awareness grew as my emotional development has always been several years behind my bodies actual age!

I did have a great 'online penpal' kind of friendship with a girl from South Africa who was also housebound/mostly bedbound but sadly she passed away (not from ME.. she had another genetic progressive condition) we would chat most nights via online chat as she had difficulties processing speech too (Auditory Neuropathy) I do miss our chats. Everybody wants phone or video chat these days and its just too difficult and exhausting for me.

 

[Anchoress]

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.

 

[MushroomButts]

Hi
I know loneliness can and is a major thing for us ... How ever I've never seen a post on it on PR ?
I've posted before on the struggle of being lonely and housebound . Peop have spoken about the activities they use to distract themselves .
What do people do to help the loneliness ? Can we survive so cut off from society .. is it possible ..
Or can loneliness actually cause a broken heart and kill us .
I've heard some say they don't actually mind being cut off I can't understand this for myself .
I have online and phone connections . V limited in having visitors due to PEM . I darent go into the community for risk of PEM . .

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.

 

[Rufous McKinney]

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.

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).