How to Handle the Loneliness and Isolation?

[Carrigon]

For those of us who are mostly housebound, how do you handle the loneliness? It's starting to get to me.

One of the worst parts of this disease has been the isolation. Losing all friends, losing family. Basically losing contact with everyone in your life. I have a few people I still talk to once in awhile, but they don't understand and act like I'm just annoying them if I call.

I don't get to meet new people since I can't work or go to school. And being on the net is just not the same thing. Then I have the alternate problem of not feeling well around alot of people or socializing too long, so that makes it even harder to meet anyone.

Anyone else suffering with the loneliness like I am?

 

[alex3619]

Hi Carrigon, what you describe is almost normal in long-term ME/CFS patients, or at least very common. I have a range of strategies, but one that might help is to use skype or second life to talk to real people, especially other patients. It helps develop a sense of community, that we are almost family, and while it isn't the answer, its at least a step in the right direction. Bye, Alex, fellow isolated

 

[anncavan]

Hi Carringon,
I'm so sorry you're going through this. It is tough. I've thought a lot about this recently. I just hear so much of it on these blogs. And it makes me so sad. I also get lonely and feel isolated, even if I am around people. It's just the feeling of the world is moving on without me. I especially feel that way about my career. But then, that's when I dig into whatever cause I can get involved in online or with my doctors, and remember this is my "thing" right now just like running or volunteering used to be. And I'm telling you, I'm keeping track and I WILL use these activities as "experience" on my resume again someday! My next career will be in online something or other

Anyway, back to the topic of friends. I try to not have any expectations, as it's the ones you assume will be there who won't. But then there will be the ones that surprise you. And so many times people just don't know what to do. And I can't blame them, I've felt that way before too. I've also been yelled at by a friend for not being there for her when I probably should have. So I just remember back to that time and know I wasn't trying to hurt her, I was just wrapped up in my own life.

I am sure I overcompensate with my "old friends" but they still seem to keep coming around. When I really think about it, I can see I have a pattern. I overwhelm them with questions about their life. I take a very active part in their lives, if not physically, I still make sure to ask about kids, parents, pets. And I've found a lot of them know I have all the time, and can just listen. So I seem to have become the person people come to for listening lately. We have a much better perspective on good/bad, right/wrong, big/little being in our positions. It's as if we're the town wisemen all of a sudden. Anyway, once I've exhausted (literally) them with my questioning they do always ask how I'm doing. I am so self conscious of my health situation defining me that I give them the update but then also talk about whatever else I can. I've started to realize I work on a lot of "cause" or "research projects" related to CFS. I'm workign on them as if it's a project I have at work, so I'll talk about it teh same way. And then, the same old BS I always dished. And I'm definately in the know on TV shows and movie recommendations.

Finally, and most importantly, I WON'T LET THEM FORGET ABOUT ME! I jsut keep reminding myself that it's not personal, and I have way more time on my hands than them. Granted not all of it healthy and productive. But still, there's the whole idea of the "phone goes both ways," yet I have to admit I need the attention and conversation more than they probably do. So I don't keep track, and I just keep calling, texting, facebooking. And as rediculous as it sounds, they start to remember me more and then they start calling and texting too. Maybe i'm more of a gnat, or chinese water torture, but I've overwhelmed enough of them into submission to keep me feeling loved

Hang in there Carringon, and PM me anytime in you wanna chat.

xoxo
Lannie

 

[justy]

Hi Carrigon, i have exactly the same problem with loneliness and having lost most of my friends. When i do make the effort and go out for a short while to somewhere where people i know are going to be i find the questioning about my health embarrasing. Even more embarrasing is the what have you been up to question, Erm nothing just like the last 10 times you saw me. My friends ,mainly look embarrased and i feel embarrased too.
I find it hard to keep in touch by phone because when they are around to talk - mainly late evening i am way too tired to cope with talking to people.
Not going out to work or social events makes it hard. I also live in a very remote rural place on a long track with no passing traffic and no access to a local shop etc so i dont see anyone all day at all. Just look at the treess and birds.
I dont have any answers for you im afraid, my online friends are very important to me, but i realise we are not "really" friends in the normal way.

 

[sleepy237]

Hugs Carrigon, lonely here too. Seems its a different world from the one I live in outside the window. I find the net best for interaction but I know its not the same. We are social by nature, and this illness really robs us of that ability to maintain contact. I find chatting here with fellow sufferers a blessing cos then even though I am lonely I know I am not alone in the world with this. I don't know how much your illness disables you but if I had just a little recvery I wuld be trying community groups. The loneliness does compound the suffering. Sending you warm thoughts.

 

[Esther12]

Finally, and most importantly, I WON'T LET THEM FORGET ABOUT ME! I jsut keep reminding myself that it's not personal, and I have way more time on my hands than them. Granted not all of it healthy and productive. But still, there's the whole idea of the "phone goes both ways," yet I have to admit I need the attention and conversation more than they probably do. So I don't keep track, and I just keep calling, texting, facebooking. And as rediculous as it sounds, they start to remember me more and then they start calling and texting too. Maybe i'm more of a gnat, or chinese water torture, but I've overwhelmed enough of them into submission to keep me feeling loved

I think a lot of people with CFS can feel insecure about this. Social stutus and assumed power are such an ingrained part of our social relationships, but then a chronic illness will suddenly have a profound impact upon our percieved value, one which we can resent and even refuse to accept. This is often tied up with the way that CFS is viewed, by others and sufferers. Ummm... this is a complicated topic to start typing about at this time.

Best wishes to all of you though... it can be a tricky one.

 

[SickOfSickness]

Sorry this is a quick reply with some ideas. I don't mean to seem insensitive. You said mostly housebound so some of these won't work. Cats or other pets (that are not a lot of work) that you can cuddle with. Or you don't have to own the pets, but going to a local shelter and spending time with animals. Volunteering to do light easy work if you can. Local support groups. Being around people even if they are strangers - just going to the library, making small talk with others. Online socialization where there is voice or webcam so it feels a lot more real. Socializing with hired help, for example, if you can afford to have a maid or other helper once or twice a week. Or trading with someone instead of paying them. Or say you offer to watch a well behaved child or pet, or teach/tutor someone. I am wishing I could have an understanding roommate.

 

[Carrigon]

I have a cat, it's not the same thing. Forget volunteering, not well enough. Not well enough to go out beyond my shopping, which nearly kills me. And as far as webcaming goes, didn't help one bit. It is not the same as having real people around. Can't afford to pay anyone to be here, I am not even really making it now.

Probably nothing will make me feel better since my family died. That was all I had. And nothing is the same. So losing all my friends on top from this disease and having all my other family relationships destroyed from it, there's like nothing left. I just wish I was living around people who understood. No one here does and they ignore the fact that I'm sick and expect me to act healthy.

 

[caledonia]

AnnCavan! - chinese water torture - ROFLMAO!

But seriously, I have the same problem, but luckily, I at least have a BF and a sister who sort of wanders in and out when she's not busy.

This is more of a long term solution, but this is where ME/CFS community living would be incredibly helpful.

Maybe get a roommate of some sort? It would probably be best if they had some kind of chronic illness. Plus it would help out with the money.

Or if we had the social service support or local organizational support like AIDS patients or MS patients or the elderly do.

 

[Nielk]

I have a cat, it's not the same thing. Forget volunteering, not well enough. Not well enough to go out beyond my shopping, which nearly kills me. And as far as webcaming goes, didn't help one bit. It is not the same as having real people around. Can't afford to pay anyone to be here, I am not even really making it now.

Probably nothing will make me feel better since my family died. That was all I had. And nothing is the same. So losing all my friends on top from this disease and having all my other family relationships destroyed from it, there's like nothing left. I just wish I was living around people who understood. No one here does and they ignore the fact that I'm sick and expect me to act healthy.

I hear your pain. It's a real dilemma with this illness and there are no easy answers. I find that the more isolated I get, the more I become a recluse and don't even want to answer phone calls. I know this is not healthy but that's how I
feel. I don't think that "normal" people out there realize this situation. After all, they use isolation as a means of torture.
What I've been trying to do is to be happier being with myself. Doing things I enjoy - for me-like reading a good book, watching a good movie on TV or taking a leisurely bath.

On the other side, if you are a real social person and you crave the personal visit of people, I would try to e-mail my past "friends" some of the u-tube videos that explain the problems of CFS and make them understand your situation. I would even
tell them how you miss them and would love to have them visit you. I find that one on one is much easier to take than a group of people.

In any case, I feel for you and wish you good luck and better yet, a quick recovery.

Nielk

 

[Victoria]

It must be very hard if you're a naturally social person.

I've always been a solitary individual, even through the most social times of my life (in my twenties) & even when travelling with a group.

While I'm often alone, I'm rarely lonely.

I get intensely involved with whatever interest I have at that time in my life. It's hard to find the right balance in your life even when healthy, let alone when you have chronic ill health & pain.

I guess the thing to do, is learn to live with your own company. Find a subject or hobby that is free, easy, rewarding & enjoyable.

I think one needs to learn how to enjoy the simple pleasures (that aren't taxing or cost money).

Not sure what to suggest for you, as I enjoy my own company. But I do take the opportunity to chat with shop owners, market stall holders and my neighbours (when I see them).

Are you near a library or park where people gather? A library is a great place to go. You can sit there reading or start conversations with complete strangers if you wish. It's a safe way to chat to strangers.

I find most people & crowds suffocating. They're tiring. I can't keep up a long conversation or concentrate on listening for a great length of time.

I encounter small conversations everywhere I go, but on the whole, I am quite happy on my own. Of course, I am lucky enough & well enough to have a couple of hobbies & go for a walk every other day. They're hobbies that can keep me amused & occupied, or if I'm feeling unwell or too tired, I can let them lapse.

Not sure how I'd go being house-bound or bed-bound.

And the thing is, even if one has a large group of friends or acquaintances, one can still feel lonely. You can feel alone in a room full of people.

 

[Tia]

YES, I've suffered from this for the mostpart of my life actually. I've tried so hard to make good friends, but just as you say without a job or such I tend to meet the strangest people and have to break the connection and by then I'm exhausted and in need of my "hibernation" and it starts all over again: I sleep my days away, get anxiety from the isolation and start reaching out for friends and meet weirdos again and get scared. Story of my life.

have been thinking about this problem fr YEARS now and haven't come to a solution since I can't work. I still chew on this one, it's actually the hardest thing I ever got to solve. Every other riddle I've got in life I've managed to solve, but this..this haunts me. If you think of anything or get any good advice, please PM me if you have the energy. As will I if I come to a solution because the loneliness gets VERY painful at times. Man is not meant to be alone.

 

[Dainty]

I have a cat, it's not the same thing. Forget volunteering, not well enough. Not well enough to go out beyond my shopping, which nearly kills me. And as far as webcaming goes, didn't help one bit. It is not the same as having real people around. Can't afford to pay anyone to be here, I am not even really making it now.

Probably nothing will make me feel better since my family died. That was all I had. And nothing is the same. So losing all my friends on top from this disease and having all my other family relationships destroyed from it, there's like nothing left. I just wish I was living around people who understood. No one here does and they ignore the fact that I'm sick and expect me to act healthy.

Carrigon, I'm so sorry to hear your family died. It must feel like you're loosing all real-life support.

I have no idea if this would work, but is there any way you could try to get a roomate, prefferably one with CFS who will be understanding and supportive?

Also, I do not know where you stand in your religious beliefs, but I consider God my best friend, he's always up for a chat, takes less energy to talk to (as He can read your thoughts ), understands exactly what you're going through and how you're feeling, and forgives you when you hurt Him. Relationships aren't easy and a relationship with God isn't either, but a side benefit is that the loneliness is eased somewhat.

It doesn't take away all of the loneliness, but He does comfort me trhrough the darkest hours.

Feel free to PM me if you want to talk about it more...I can't guarantee responding in a timely manner but I'd try. I have no intention of pushing this on anyone, but just like we share various treatments and lifestyle tips that help us get through this, so also I'm sharing something that helps me for the potential benefit of others.

 

[Lee Ann]

Hi Carri,
I know this may sound simplistic, but when I'm feeling lonely and feel like the only person on earth, I listen to Christian music like Third Day or Toby Mac. It takes me out of my funk, usually. I realize it's no substitue for human companionship like having a shoulder to cry on and having someone to hug and hold you. I always wondered how POW's sustained through their horrific conditions. It's hard to conquer the human spirit I suppose.
Remember, this that your are battling cannot steal your eternal life.
Peace

 

[glenp]

yahoo messenger

I have yahoo messenger. Every night there is someone who will invite others into chat, all are sick with various illnesses. When I am not up to typing or talking I can just sit there and listen to others, when you get to know them they become your friends, and its not so lonely. Its not like the regular yahoo chat rooms. This is done through pm so only those invited can get in.

glen

 

[Cort]

Skype and videochat. There is nothing like face to face but Videochat on Skype is the closest thing I think...All you need is a camera on your PC.

 

[Mark]

I hear your pain too Carrigon. So sorry.

I've been thinking about this lately, and I keep thinking that local patient support groups are really important, and wondering what we (PR) can do about that...and also that if there isn't exactly an ME group, sometimes people with MS, or other neuro-immune conditions, have many very similar issues and needs...I think mutual support can work wonders for us emotionally, there's this desperate need just to speak to someone else who understands one's situation; I've found that finding just one or two people who do understand can really help.

 

[Evangelina]

Dear C,
I was alone for 17 years. I finally started praying for a friend about 3 years ago. I was virtually housebound, but I tried to go to the library once every 3 weeks or so (hey, I needed some cheap thrills). I had been praying consistently for a friend for a few months and one day in the library I saw a girl I had known in church from about a decade ago. We never had ''hung out'' so I didn't know if she would remember me at all. I went over and said "hi" and asked if she remembered me. I then asked her if she wanted to come over and watch a movie with me sometime. She said 'sure' and we have been friends ever since. We watch movies at my house (or hers if I can get there) and I have become friends with her mother and youner sister too. I guess I am just saying that prayer works. Eva

 

[Carrigon]

I've put in a moving request, so who knows, maybe I'll meet someone at my new place. You never know.

 

[Mya Symons]

Carrigon, could you get out every once in awhile to get to an in person CFS support group? I know it will be difficult, but if you can get to a couple of meetings it is worth it. Other people who have CFS make good friends and you don't need to worry about them not understanding and questioning you.