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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Heart Hurt

Messages
24
Location
Portland, Oregon
One is the lonliness number....been listening to 3 Dog Night...guess that dates me. Oh well. Live alone, too much time alone. No love. No one to hold me when I feel overwhelmed. No one to walk this road with, which is one of heavy emotional burdens and challenges. My spirit is wearing out. I dont want this illness to take love from me too....but it could, maybe, if I cant somehow get myself out into the "real" community. Im just so filled with sadness today. :tear::tear::tear:
 

jackie

Senior Member
Messages
591
oipemowell, me too...i dont even feel well enough to write all the things id like...to let you know youre not alone...but i cant even do that small thing for you.

know that i feel what you feel right now. one more...feeling as you do. that makes two of us.

in fact...i FEEL just as your beautiful avatar LOOKS! our spirits may be filled with sadness today...but they will NOT wear out.

a sad spirit in california sending healing thoughts to a sad spirit in oregon...(remember, the sadness will pass. before we know it.)

jackie
 
Messages
24
Location
Portland, Oregon
Thanks Jackie. No, I guess our spirits dont wear out, they will live on...once out of these bodies. I just dont know how to go about getting my needs to love and be loved met. Intimately. I have my kids. But Im home alone alot during the day, (night too!). It especially hits at night. It's an agony for me, that is worse now more than the illness. Heart pain, due to a body that goes on being tired decade by decade. How can this be? It keeps me away from probably a really great guy, if I werent tired all the time. It only takes one person to make a difference in our lives. Im waiting and looking for that one person.
 
Messages
24
Location
Portland, Oregon
I know Camas....Im ready to put my summer clothes on...I like to wear lots of color in the summer...and wear less clothes too! This bundling up 9 months out of the year is getting to me. Im a California girl, and I feel like I need to move again...somewhere else...Im SO feeling stuck in my life. Ive got a birthday coming up...I cant believe the years and the fatigue that goes with it, just keep on going by. And YES, the Pac, NW, makes you WANT to recluse. The sunshine isnt around enough to come out and play. I wasnt like this in Sacramento. I used to go out dancing alot. Ive become quite the hermit...and I have to stop this.
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
I really feel for you all in your loneliness. Having no one to share your days (& nights) makes for an extra burden on your illness.

In the last 5 years, I felt more alone in my full time working life than I do today (in retirement due to chronic pain & ill health).

When working, no one shared my pain.

No one understood what it was like to hover on the surface of life. Most people subscribe to the idea that you can just take a pill, or spend a few days in bed to recover. They don't understand what it's like, to not have those options as a treatment.

It was like I was on the outside of the world, looking in.

Because everyone at work was healthy & spent their day talking about their "normal" lives - shopping, leisure activities, overseas holidays, buying this & that (which I could not afford with the load of medical bills & certainly did not have the energy for).

More & more as the years rolled on, I withdrew from their company & eventually it got to the stage where they rarely included me in anything much. They even had meetings in the meeting room, & my Boss said, Vicki you don't need to come to this meeting about "xyz" function, because I know you won't attend anyway.

So I guess I'm saying that, being in a room full of people, can still be lonely.

So, surprisingly, this new life (non-working) has brought me more in touch with a couple of people who I never had the energy to be with before.

I have the time & energy to stop & have a real conversation with a shop assistant.

I know many members are housebound & can't get out & so remain "invisible" to the rest of the world.

I REALLY do think chronic illness places you in another dimension. It places you in a world apart.

I do hope the summer brings you all some relief on the other side of the world. If you're not already taking some & can afford it, perhaps Vitamin D supplementation through the winter months might help.

Sunshine really does lighten your mood & uplift your spirits.

In the meantime, I can only sympathise with you & urge you not to lose Hope (for a brighter, healthier future one day).
 
Messages
24
Location
Portland, Oregon
Hi Victoria, yes I know the feeling of being with people, but not "with" them...even with family. When I worked, I felt like I was dying...I think everyone thot I was stuck up. I was just trying not to fall off my chair. I would stare at the computer and have my headset on and pretend I was on the phone with a client..just to get a break. Sit there and Breath. And watch the clock for 5pm.

I took Vit D supplementation, didnt do a darn thing for anything, and I was as high as 99 on a scale of 33-100, I think.

It was very hard to work, indeed. I am glad Im not working anymore, but then you have worse isolation, I have found. At work, at least I had some sense of belonging. Altho, I hated my job. But leaving that job cuz I was sick was not the option I had in mind. ;)
 

camas

Senior Member
Messages
702
Location
Oregon
oipemowell, that's it exactly! It's just hard to get motivated to get out and be sociable when the weather is so endlessly crummy. During our very brief sun break this afternoon I forced myself to sit on the deck and just soaked up the sun like a lizard. I think it did help a bit. I can't wait till we finally get to break out our summer clothes! In fact I might just go do a little internet shopping and getting something bright and cheerful in anticipation of the sun's return.

(Sorry, didn't mean to hijack your thread with weather talk.:ashamed:)
 

Victoria

Senior Member
Messages
1,377
Location
Melbourne, Australia
Hi Victoria, yes I know the feeling of being with people, but not "with" them...even with family. When I worked, I felt like I was dying...I think everyone thot I was stuck up. I was just trying not to fall off my chair. I would stare at the computer and have my headset on and pretend I was on the phone with a client..just to get a break. Sit there and Breath. And watch the clock for 5pm.

Gosh, that's exactly what I used to do :D (except that being at my desk meant I couldn't escape. I used to catch the lift down to the basement restrooms & "take a break").

And a staff member actually DID catch me as I fell off my office chair once. Luckily, it was someone outside the department I worked in.
 
Messages
24
Location
Portland, Oregon
Ha Ha, Victoria!! Falling off your chair. That's not funny, but it is. I also would eat my lunch in my car, take 15 minutes to do that, cuz I would bring a salad to try to cure myself with diet, then the other 15, lean back in carseat. Then on my 15 minute breaks ...2 per day..Id go into the lounge, where there was one bedlike cushion you could lay down on. Gosh it was hard getting through the day. I was reclusing at work!!!

As for the weather Camas....more rain still coming. I love that the air gets cleaned out here in Oregon...the sky is so beautiful. Hey, Im hijacking my own thread. Writing on here today and cranking up Led Zeppelin and Steppenwolf, helped my angst today. I need a man!!! Urgh.
 

camas

Senior Member
Messages
702
Location
Oregon
As for the weather Camas....more rain still coming. I love that the air gets cleaned out here in Oregon...the sky is so beautiful. Hey, Im hijacking my own thread. Writing on here today and cranking up Led Zeppelin and Steppenwolf, helped my angst today. I need a man!!! Urgh.

I think loud music must be the antidote to this weather. I just finished watching the 50th anniversary stratocaster concert on Palladia and had it loud enough that my ears hurt! :Retro redface:

I was sitting around yesterday trying to enumerate all the reasons to love the rain -- garden looks great, don't have to drag hoses around, no need to fill the birdbath, no pollen allergies, no pollution, don't have to wash the car, weeds are easy to pull, don't have to worry about sunburning, no need for a humidifier, no need for lotion, fewer wrinkles, lower water bill...

All in all, I'd rather have sunshine though! :D
 
Messages
24
Location
Portland, Oregon
Yes, rain is good Camas. But short summers make me stressed out. I feel like I got to hurry and enjoy the sun, once it's here cuz it wont be around very long. Then if Im having a bad day, and have to rest, while the sun is out, I feel Im wasting a very precious sun day. I should be down at the beach. At least where I live I can spontaneously get to the beach if it's gonna be a good day down there. One upside of not working, I guess, is I can get to the beach and lay down there....cant walk the beach very much at all, tho. :(
 

camas

Senior Member
Messages
702
Location
Oregon
I feel the same way about our short summers. I can't bear to be inside on a sunny day, which usually translates to just puttering around my yard or visiting with my neighbors whether I feel up to it or not. That's probably why I always relapse in late August. How wonderful that you can make it to the coast on your good days though! I finally conned my sister into driving me there last fall. Hadn't been in five years. If there was a good CFS doc anywhere on the coast, I'd give serious thought to just moving.

Well they are promising us sunshine this weekend. Let's hope they got it right this time.
 
Messages
24
Location
Portland, Oregon
Camas, where are you? Id be goin to Cannon Beach. I drove down there once, and had to lay in the back of my car for an hour, couldnt fall asleep. so I could drive back. Other times, I get down to the beach and just lay there like a dead person. It's so pathetic. I think, this is ridiculous. How ridiculous. It only takes a little over an hour to get there. Most times I go with my son, who drives now.