How can isolation, loneliness and inability to make friendships be managed.

[Raindrop]

I am not sure that this will get posted correctly, as haven't done one of these threads.
I have had ME for more years than I can count - "not right" since childhood, but almost 20 yrs since
I have been able to work. My work had been the focus of my life and since I had never married and had no family in any real sense, becoming disabled was a deeply felt crisis. I have tried my best to cope and deal
with poverty, housing challenges and many lost relationships, as well as severe illness. I have gotten sicker every year since I became disabled and am now mostly home or bed bound, with most of my energy
having to be spent / saved for doctor visits or medical tests. (Unfortunately, I have also developed some other serious health issues, which are barely able to be treated due to my extreme intolerance of chemicals.)

Lately I have just been going nuts with the *isolation*. As friends have dropped away through the years,
I am unable to replace them. If my ME weren't so extreme, I could get out a few times a week and try
to meet people. As it is, I cannot drive and so am dependent on whoever I can find, and it's hard because I am unable to take public transportation or afford a driver. Even when I do have a positive verbal exchange here or there, I can't much make a plan to get out and go have fun. Who can possibly understand this sort of condition unless they are VERY unusual or have it themselves?
Many years ago I had a dog. Now it would be very hard because of limited ability to
care for one. (I am not a "cat person" etc) This breaks my heart because I know it would help a lot.

How do any of you who are single cope with intense isolation and loneliness? How do you make friends
or keep them, for that matter. It seems impossible to CULTIVATE relationships. If you can't drive,
feel too poorly to talk much by phone, have to keep all your energy and financial resources
for medical stuff, can't sit up long (or stand) etc......what do you do? The problem is also that with the visual
and neurological issues I have, it is also hard to be on the computer much for social networking. Hard to have hope and know how to get OUT of this feeling of being trapped from life. I used to be a real
"problem solver" and always found a way around barriers. None of prior coping skills (socialization,
entertainment, going on a short trip) are available to use now. Obtaining a sense of purpose
and "living life" is what we were made for. KNow there are no easy fixes. Just some support from
others who have lived it a long time would help.

 

[rosie26]

This is a really hard one @Raindrop. The need to chat and socialize but the illness won't let you. I found this quite tormenting and frustrating. I feel like I have lost a lot of social skills from years of having to be quiet and rest. Alone with self. You do get sick of self.

I am so glad I found PR as I can forget myself and I must say I am sick of reading books and all the other things I have been doing to distract myself for so many years. I only bought a computer 2 years ago - so it is a new thing and a good distraction.

I am sure others will have some good tips for you, my brain is struggling to remember other things. x

 

[arx]

Find support and friends on forums, and meet them or talk to them on the phone?

I don't think people who haven't experienced something of such magnitude can really understand a patient's reality. They can try, sure, and maybe come quite close, I wouldn't know. It would require excellent imagination, much intelligence and compassion to do that. You've been a patient for a long time, so you must have gotten used to people not understanding.

But we all need some intimate interactions time and again, that fuels us with the strength to go on. Even though it might be little moments, maybe they put a smile on your face?

A little chat with someone, some distractions like art / music / books, whatever is or was interesting once, would help?

 

[Raindrop]

Thanks Rosie and Arx.
It's nice just to hear from people who have lived this. I do try sometimes (when I can look at the screen and handle movement) to watch a movie. Find that "character study" movies are the best, since
there is less heavy action on screen. With neuro-vision problems books are hard, and basically just do a few pages here and there.
These are good suggestions. Yet the soul does cry out for human connection! It's such a basic need!
I am glad I found this forum. How would one ever connect with people from the forum on a more
private basis? Can you tell me how someone would exchange personal email or phone number, for example, without that being public? Small chats would be good I think - ones not too straining on anyone, yet giving
mutual support.

 

[arx]

You can use conversations.. which are private messages.. on the top right where it says Inbox next to your username

 

[Raindrop]

So is it like..."Inbox"....then the box "Conversations" comes up and then "Start new Conversation"??
To start new conversation do I somehow go to a particular person or ??

 

[arx]

In "start a new conversation" you enter the name of the participant(s) you'd like to have a conversation with. You don't have to go somewhere, you just have to type the name of the person in that box.

 

[AbbyDear]

correct Raindrop. You can (left) click on the name (generally in blue) and the popup allows you to "start a conversation" also.

 

[arx]

Oh yeah. That too. Don't know how I forgot that one. Thanks!

 

[*GG*]

@Raindrop started a conversation with you. If you lived in a populous state, you might have a member of this forum right around the corner, never know! So you might want to put in your profile a little more than USA, unless there is some reason you are not being more specific?

GG

PS Will be stepping out for a bit, so will not likely get to you until later today. FYI

 

[WoolPippi]

For a short while I was where you are, only for a couple of years.

• a few friends I had where willing to visit me, for just the half hour I could muster energy. They did something else in town the rest of they day. They brought their own snacks.
• I exchanged handwritten letters with people. You can write and read them at your own convenience. Paper is special.
• I connected online to others over a shared hobby. Knitting in my case. Could be dogs for you.
• the knitting people had meetings one could visit. I used a neighbour-run taxi service and would only stay 30 minutes, once a month, expensive yes. Over time I could stay longer and ride with others attending.
• had my shopping delivered but 'often' visited a small local shop and talked to the people there. Could be a tea room, a second book shop, the squirrel rescue centre. For me it was the organic farmer's wife who runs the shop. Just a little conversation.
• kept notes about ilness and possible angles of approach. This was an ongoing conversation with myself. To have direction.
• i asked at a Random Act of Kindness group on the internet to send me postcards, i keep them near my bed.
• exchanged some crafted items via swap-bot.com but this has a lot of flakers. Handmades are special too.

In time I lost all my friends from previous time, even the ones that visited. They just didn't understand or have no room for my ways in their lives. I have found new friends in that knitting community. The introverts there welcome quiet get togethers or visiting just one on one. Just like me.

 

[SickOfSickness]

Listening to the radio where 2 or 3 people are talking makes me feel less alone, or even 1 person. Or Listening to TV.

Also if I am out at a park, store, or anywhere just overhearing chit chat is nice.

If you know anyone with a dog, see about pet sitting for a brief time, (2 hours) or visit with dogs at adoption drives or shelters.

 

[rosie26]

You just reminded me @SickOfSickness talk back radio is good too.

 

[Cindi]

Raindrop. I exactly am at the same situation as you are. At this time of my life i feel totally isolated and really don't know what to do about it because of the reasons you have already stated.I had some siber friends and that was giving me some support until this year but this year i broke my hip,had an operation and had to be in bed for sometime.During that time i needed friends visiting me,some affection,some eye to eye,face to face connection but there was not much.

 

[Patriciann]

Wow, this hit home for me. My husband died in 03 during my final week of chemotherapy for my advanced stage colon cancer we had endured the surgery for and here I was alone with CFS/ME and mostly bed bound. Friends moved on with their lives and seem resentful that I have remained ill. Years of coping without work leaves an economic reality that has the doors which were ones of opportunity slammed shut tight on me any longer. Even my church 'family' tossed me out as if worthless garbage. I have had numerous medical emergencies where I faced them alone -- that was my WAKE UP CALL to face reality as it IS and to begin letting go of a lifetime of blind faith in what had no life-sustaining substance in these crisis circumstances. I have been targeted for hate crimes from being seen alone on my mobility scooter after the death of my husband -- I was not expecting this and my lack of awareness allowed me to be exposed to a lot of REALITY I never would have imagined as even being possible, until faced with living this nightmare. I order my groceries on line from WalMart when too ill to get to the store -- this has saved my life many times. I am still adapting and hanging on to life the best I know how. I have a pet parakeet but when she passes I will not have any more pets unless life can somehow improve enough here to allow for a quality life to be lived once again. The internet has saved many of us who live in crisis without good support - it seems that way more and more to me anyway. ((hugs)) of understanding shared.

 

[taniaaust1]

I use this site to help loniness.. there is also the general chat.

I do a lot of distraction stuff so I wont think too much about being lonely eg I try to develop various hobbies for myself and tiny fun goals eg I recently grew a lotus from seed (its still growing, only at the one leaf floating on my pond stage with a second shoot.. it felt like such an amazing achievement to grow that and watch it grow). My current hobbie is tabpoles. I sit out by my pond watching them.. waiting for them to turn to frogs... I have some which any day now will be getting legs.

Anyway.. if you are getting lonely and cant get out. I suggest to find some online groups of things you can develop interest in eg photography can be done anywhere .. or develop some at home hobbies. I also for the past 3 mths decided I'd try to indentify all the plants about my house so using the site davesgarden to do that (take a photo of a plant and get them to indentify it if you cant). I feel good knowing Im actually learning stuff even thou Im quite ill rather then being home just stagnanting. Maybe when the day comes if I recover.. I'll have a ton of new skills.

I love gardening but of cause with the ME/CFS that is so so hard for me to do and I cant keep up with it here so are now getting into aquatic gardens. (Ive come up with the idea of if I can do this right, maybe at some point in future I could do "bucket gardens" (dont look that up, Ive made that idea up) and sell them online with pick ups only.

Having interesting hobbies can be the answer for loniness.

...........

If I can/when I can get to the point where Im well enough to have people about me more, Im thinking about putting an ad in the local paper.. just a friend seeking ad asking if anyone is interested in coming and playing a game with me for an hour or 2 a week.. there was a board game I loved to play as an older teen. (I couldnt do that right now thou as Im struggling already too much with the pacing of things I need to do).

 

[justy]

This is also something that has hit me hard recently - although I realise my circumstances are much better than most. I have a husband and children, but only ever go out for short trips with them. I have lost nearly all friends, and all confidence for doing things alone (if I even could?) has gone.

What is hard for me is that due to the effects of the illness (I am moderately affected) I have developed a type of reactive (or perhaps protective) agoraphobia - I can really only go out with a person I feel safe with and if I know I haven't go to walk, that there will be toliets etc etc etc.

I live in a very isolated rural spot - nearest shop is 4 miles away and there is NO local community in my Hamlet that I can take part in. I miss the interaction with people outside my husband and two kids, I feel terrible not being able to be independent. I often watch people on TV or in movies doing normal things like going to business mettings, or to a bar on their own, or even just shopping and wonder how they do it. I don't know how to do it, or fi im even really well enough to cope with it.

I had thought about forcing myself to go out to something in the local town, but the only things available are tai chi or yoga - not activities I can currently do. There is a mental health craft group - but quite honestly I don't feel like I fit in there at all.

I had thought about setting up a face to face M.E group in a local café - but there is such a small population here it would be hard to get members I think.

Goin nuts with being stuck in this field 6 days a week (I usually go out and do something for a couple of hours on a Saturday. We don't even live on a road (1/2 mile up a bridle path) so I never even see someone walk past or a car go by. Feel so isolated. But most of the time I cant really handle any extra interaction.

I compained recently to my husband about feeling so isolated and not having any REAL friends left and then that week 3 people I haven't seen in ages turned up to see me. It was lovely to chat and see other people, but by the end of the week it had put me in a severe crash and I honestly cant cope with the thought of having to make new friendships.

I have always been a very outgoing and sociable person - I feel so unlike myself these days. Last night my husband told me all about his day at work, as usual and I was so jealous of his ability to be doing interesting things out in the world that I cried and then felt really ashamed.

@Raindrop - could you find, via the forums a SKYPE friend? I have Skyped with a couple of more severely ill patients - although it is hard to keep this up for me regularly - and I think it is a great way for house/bed bound people to get interaction with others.

Sending hugs

Justy x

 

[Raindrop]

To many of you who have posted about my topic, I THANK you!!! Feel so much less alone already!
I want to respond.......and WILL. However, I am facing an emergency at present and need to
put my scant energy there. It is wonderful to have this understanding and know that others
have been in or are in the same place. Not working for years and not being able to "have normal people fun"
along with isolation, distances one from all previous activities and most friends. Almost like
having an entirely new life. Certainly am a different person.
Will respond to specifics above when I can and hopefully sooner
than later!

 

[Patriciann]

I think most of us can fully relate and know how important it is to have 'balance' -- take very good care and catch up when you are able.

 

[Raindrop]

I think most of us can fully relate and know how important it is to have 'balance' -- take very good care and catch up when you are able.

Patriciann,
Thanks! Will hopefully be able to get back to this discussion in a few days to sometime this next week.
I do want to respond further to you. You have certainly been through SO much and I really feel for
you having survived all that you have! My heart goes out to everyone who has endured not only physically,
but also emotionally in SO many ways with ME.
Raindrop