Chronic Fatigue Syndrome Support Group

I'm mostly house bound and it gets lonely. I have two close friends that I keep up with by phone. For Thanksgiving I'm going to volunteer my time at a friends church that puts on a dinner for anyone to attend they also take meals out to areas where homeless people tend to gather. Some of the homeless come to the church but some for there own reasons don't feel comfortable so we bring the meals to them. I've been doing this for several years and they have been the best Thanksgivings for me and if I get tired I sit down we usually have alot of volunteers so no one gets over worked. I would look into volunteering there maybe some where you don't have to commit, just show up if you feel up to it that day. Nursing homes are a great place to volunteer to just vist with the elderly alot of them would love to have someone just drop in and vist. Maybe a support group with help. I find I feel better hanging out with strangers they have no expectations. We have a mall not far that has walkers who walk for health reasons and also to socialize you might want to see if you have something similar in your area.

Hope you find something that works for you.

Hugs

I'm homebound myself, and the holiday season can be rough. I know exactly what you mean about watching the world spin around you, seeing people who are obviously all involved in life and its joys.

I have accepted the fact that I am very ill...and social mixing just makes me worse, I can't handle any kind of stress at all.

I think you need to find something to occupy your mind and spirit, something you enjoy doing...like an engrossing hobby or craft. I live in a warm climate and garden year round, it keeps me going.

As a friend on ds recently pointed out to me, living with a partner who does not understand this illness would be a lot worse than living alone. At least we can control the stress in our lives.

I read some years ago in the CFIDS Chronicle that about 36% of us are homebound.

Yes. This is a tough one. Thank you for your post and signing up
onto this site. Are you actually living in a college dorm? Or is it
like a dorm? Do your rommates mind when you're up at night?
I too live alone. I've had 3 roomates who were younger than
myself and had active lives.
Now, I actually feel better not having
any. My place is good sized but somewhat small. I have a dog
for which I'm very lucky. I have enough energy to take hime out
and then people will stop and talk..he's very engaging and 'cute'.
Some days I'm very slowed down also. I have trouble making
plans..I may need to cancel the last minute.
I also volunteer.. I tutor people to learn english. Each of
us has to learn to find our own way. Maybe, there's a local
animal sheter where you could walk the dogs? Or go to a
volunteer orgainization. They usually have long lists of places
and people who can use help. Some have lower levels
of involvement. Just sharing is a step
forward. I know I didn't feel so isolated today when I read your
post. I saw your photo...I liked the musical insturment..
You are a good looking fellow. Know that your were 'seen'
today.....Again , thank you for sharing.....hang in there....

I believe The picture is Eric Clapton or am I just dreaming? Is that you?
Either way your post has many of us who can relate to it.I feel very much as you do. It seems as though we get ourselves wrapped around fear, or at least I found that I have because I haven`t worked or been out socially for quite awhile. I envy RithieD living in a warm climate. What I wouldn`t give to have a small garden again. That was my favorite hobby when I was well and owned a home. Now I`am an apt. dweller. Most of my time is spent alone or babysitting my grandaughter but there is always a component of lonliness in my life because I miss adult interaction. I`am not well enough to think about doing any more than I currently do. Maybe someday as the grandchild grows I may be able to consider volenteering. I would think that may be something that might appeal to you if it is without a commitment. I`a happy you posted this thread. At least we all have one another to relate to.
Best wishes in your desire for more...

You're not the only one up late. LOL

There should be a place for nightowls. I suppose you could find something like a stargazer's club, or hang out with hookers. They're out and about late...

I totally get how you want to be around people, but then maybe not. Sometimes it works out good, you'll do an activity with others that recharges you and makes you feel content and happy, but then there are inevitably the times when others leave you feeling totally drained.

I guess you could make a list of WHO was there and how they made you feel and then only do stuff with the people you enjoy - probably TOTALLY cutting out most of your family...

I recently hooked up with a bunch of old friends on FaceBook - that's kind of nice but it would be nice to have someone love me and take care of me when I'm sick. I seem to end up taking care of everyone else and when it's my turn, no one's around... and I'm the drag...

But I think I'm to the point where it's easy enough to just not care. There's not much I can do about it anyways.

I'm ok with my Danes and chickens, I guess.

ISS,
When I read this, a few ideas come to my mind.
A couple of people in this thread mentioned pets. You said you can't have pets where you live, but how about even a fish or a hermit crab? Do you think you would be able to take care of a pet? Often, pets can provide companionship without the stress of socializing with other people. For me, this is a bonus.
Also, taking care of a pet helps me feel a sense of responsibility, which, even though it is a small thing, helps with my self esteem.

When I was super lonely, I chatted a lot on the internet. It provided some social interaction without a lot of pressure.
Of course, you have to be careful with anybody you chat with. The person may give you bad advice, or say hurtful things, or just disappear one day. All that said, I liked chatting.

Another thing is, you could take up a hobby besides video games. I really like model railroading. I can get magazines with ideas on how to set it up, and chat with others on the 'net about it. Then I have a sense of accomplishment when I finish a part of the train set. I can share pictures of my accomplishments with my train friends on the 'net.

You say you like to read. I like to read in coffee shops. That way, I'm around people but I don't have to interact with them. You could try that.

Don't blame yourself. Get enough rest, and I hope you feel better soon. You're not alone.

Thanks all for your kind words and support. I will respond in depth tomorrow. I am off to spend my day spending my SSD check today. Gots many bills to pay.

Hey Rigor,
You said they were testing your thyroid and cortisol. That's good. I have very complicated and baffling health problems and it took ten years to find the causes. Turns out they were some very simple chemical things within my own body that could be corrected by simple medicine. It has taken a while and I still feel bad sometimes, but things are getting better.
Who knew the causes could be so simple? I'm telling you this to encourage you to keep trying. You never know what you will find!

No, the place I live is not an official collage dorm, but we are just 200 yards from a collage and most of the people here are young collage students. My roommates do not mind me being up at night as I am very quiet.I would rather live alone, but then I truly would be totally isolated.

The volunteer opportunity I find are commitments, some are not, but they tend to be a last minute volunteer needed type of thing.

I love playing my guitar, been playing since 1987, but because of the pain and fatigue I can only play for very limited amounts of time.

Being social sometimes can be very taxing, especially if it is in a place where I know few people. I think volunteering would be different as all would be gathered for a common cause, and people who volunteer seem more easygoing and non judgmental than most.

As for a pet, I would love a cat, but do not think a hamster would fit the bill. Cats can be loving, and listening to the hamster on his wheel could drive me crazy at times. Perhaps the next place I live will allow pets.

RigorMortis

The judgments of those who do not understand can be devastating. I can relate with you there. I try to ignore such ignorant judgments, but it is hard to do when it is a relative. Makes me glad I live "mostly" alone.

My heart goes out to you. Sometimes I feel overwhelmed when reading the stories of fellow CFSers and hearing how their lives are. This disease is so difficult and so isolating it beggars belief.

I think that you do raise some really important points as I have believed for a long time that there is a complete lack of provision for chronic disease sufferers (not just CFS) in terms of reducing isolation and preventing mental health issues from developing. The way I see it is that it would be a shame if we were all cured, but left with these terrible mental and emotional scars! It seems like sometimes the mental and emotional impact that CFS has on us is worse than the physical symptoms themselves.

I am in a different position to you because I am like the child who has never grown up, despite being 29 years old. I still live with my parents and depend on them to 'keep' me. I feel embarrassed about it, ashamed, guilty... the whole nine yards really. They are getting older and I should be helping them, but instead I am like a ball and chain around their ankles. I am fortunate that I do have some good friends and I have pets. I know I would find it even harder without them.

Remember we are all friends here, we understand and many of us are online at strange times of the day and night. I know it's only online, but I have found online sites to be a great source of support and quite social really... sometimes it feels like more people care about me in cyber space that offline!

I have been housebound before - it is very difficult. I think that your idea about volunteering is great. I know you cited your lack of consistant sleeping pattern as an issue. The way I see it is this: if you contact some of the charities and volunteer organisations and explain your predicament... tell them you have CFS and that it makes it hard for you to offer them regular hours/days, but that you would REALLY like to do something to help them... and see what they say. I hope you will be surprised. I am sure that there is someone out there who will understand and be able to work with you, to utilise your skills!

I wonder if there are any other social opportunities for you? Usually our social opportunities come from our interests or our work. As work is out for you, perhaps there is some interest you could harness like: reading - book club? Religon - attending a place of worship? Art - attending an art club? That kinda thing... You could then set a target to attend once a month or once a fortnight and slowly build it up from there if you felt able and happy to do so.

I can understand the feelings regarding socialising - I think it's a combination of being out of practice (like with anything that you don't do for a while, it always seems worse and harder when you go back to doing it again) and also the fact you are not well makes being around people draining. The key is limiting your 'exposure' to people and making sure that any social situations you do enter into are in your control... e.g. they are for a set amount of time and you can leave when you want. A support group can be a good place to talk about these feelings you have and to meet other people who will understand if you are not able to always make it and stay for a long time etc.

Let us know how you get on.