Taboo subject of lonliness

[paperdoll]

Hi there,

I've had Sjogren's at least since 2000.  Diagnosed 5 years ago.

I get so lonely... I have friends but they don't call me unless they need to vent - probably because they know I am home 
Still want to go out but get to tired driving...

Can ya help me out with some suggestions so I'm not just "The Sick Friend".

Thanks for listening...

[Jellyb]

Oh my gosh paperdoll,
I was just telling my husband the other day that the phone calls I get from friends or family ( except my awsome sister ) are just the people who want to talk at me, not to me.

He said its just because I am home and available.  He said if I am desiring a more meaningful relationship, I need to reach out on my own terms. I know how you feel, because friendships require energy, and we have so little of it to spare.

I am still trying to work on this one too paperdoll. I have friends who have decided I am a snob now because I dont want to  out anymore, they just dont undertand.

[KellyG999]

I am always telling friends I can't go here or there, and they are starting to leave me out. I have a couple GOOD friends who will come to me if I need them. I just can't sit and chat with people at length, I have to save my voice for work. Long bouts of talking make me so dry and hoarse, it's unbearable.

I do a lot of my communicating with friends via Facebook. It's a perfect way for me to stay in touch. Also, I have stopped posting those "downer" reports of this and that hurts, blah blah blah. Nobody wants to hear it. SO glad I have all of you to vent to!! I try to post some funny things like the old me.

I don't get lonely cause I have 2 big shelter rescued dogs that follow me everywhere. When I am really ill they stick by me like glue.

You always have us!

Soft hugs,
KellyG

[GeorgiaGirl]

Is there somewhere nearby that you could volunteer for a few hours each week?  If it's at a place where you are directly interacting with people (or animals) who are desperately in need, then it can be very helpful. 

I volunteer every Wednesday at a resource center for women.  We mentor moms and pregnant women.  Most of the time they are in dire poverty and there are a host of other problems that we deal with.  Once I am there, I can seem to put the pain & exhaustion on the back burner for a bit.  The act of becoming fully involved in helping someone else with huge problems (some are homeless, ill, living in abuse, raped, lost custody of children, etc) just makes me less aware of how I feel at that moment. 

It's also a great way to interact with others, the clients as well as the other volunteers and counselors. 

[paperdoll]

Oh my gosh paperdoll,
I was just telling my husband the other day that the phone calls I get from friends or family ( except my awsome sister ) are just the people who want to talk at me, not to me.

He said its just because I am home and available.  He said if I am desiring a more meaningful relationship, I need to reach out on my own terms. I know how you feel, because friendships require energy, and we have so little of it to spare.

I am still trying to work on this one too paperdoll. I have friends who have decided I am a snob now because I dont want to  out anymore, they just dont undertand.

You totally understand!!!!!!  Oh what a relief to my heart.  I am not alone! I am hoping when I can get out more I will attract more upbeat people... I get so tired being a cheerleader for many of my friends.  They do talk at me!

[paperdoll]

I am always telling friends I can't go here or there, and they are starting to leave me out. I have a couple GOOD friends who will come to me if I need them. I just can't sit and chat with people at length, I have to save my voice for work. Long bouts of talking make me so dry and hoarse, it's unbearable.

I do a lot of my communicating with friends via Facebook. It's a perfect way for me to stay in touch. Also, I have stopped posting those "downer" reports of this and that hurts, blah blah blah. Nobody wants to hear it. SO glad I have all of you to vent to!! I try to post some funny things like the old me.

I don't get lonely cause I have 2 big shelter rescued dogs that follow me everywhere. When I am really ill they stick by me like glue.

You always have us!

Soft hugs,
KellyG

That is great!  I think I will start using facebk for more happy stuff too!  I do have dogs they spoon me all day when I am flaring

[paperdoll]

Is there somewhere nearby that you could volunteer for a few hours each week?  If it's at a place where you are directly interacting with people (or animals) who are desperately in need, then it can be very helpful. 

I volunteer every Wednesday at a resource center for women.  We mentor moms and pregnant women.  Most of the time they are in dire poverty and there are a host of other problems that we deal with.  Once I am there, I can seem to put the pain & exhaustion on the back burner for a bit.  The act of becoming fully involved in helping someone else with huge problems (some are homeless, ill, living in abuse, raped, lost custody of children, etc) just makes me less aware of how I feel at that moment. 

It's also a great way to interact with others, the clients as well as the other volunteers and counselors. 

I commend you on what you are able to accomplish!

I'm afraid I was volunteering but they seem to not want someone with a changing schedule (flares).  And I am not very effective when I flare or am tired. Cannot drive.  I volunteered for the library and got the "aren't you too young to have arthritis?" because I need a more flexible schedule. 
I will try another place sometime.  I know it is hard to be a scheduling manager for non profits.  I have had elders tell me that they also want to contribute but that places do not take that into consideration... 
I have volunteered at a soup kitchen - but couldn't keep chopping carrying and stirring... if I cannot do it at home I cannot do it outside volunteering...  also have delivered meals to homebound.

may try to do ride-alongs to visit elders...

Thanks for your input

[GeorgiaGirl]

I completely understand!  Lucky for me, I can do almost all of it sitting down and it's a 5 min. drive at the most.  If it involved anything physical there is NO way I could do it!  It's a very small non-profit and they have been with me throughout the crazy symptoms & diagnosis process.  Thank goodness they are very understanding when I call & say I'm just not up to it. 

A soup kitchen & shelving books would definitely not be things I'd be up for.  Plus, my husband would be very perturbed if I managed to cook for others, but can't seem to get dinner on the table here many nights. 

[paperdoll]

I completely understand!  Lucky for me, I can do almost all of it sitting down and it's a 5 min. drive at the most.  If it involved anything physical there is NO way I could do it!  It's a very small non-profit and they have been with me throughout the crazy symptoms & diagnosis process.  Thank goodness they are very understanding when I call & say I'm just not up to it. 

A soup kitchen & shelving books would definitely not be things I'd be up for.  Plus, my husband would be very perturbed if I managed to cook for others, but can't seem to get dinner on the table here many nights. 

Oh the library I just got rides to it and answered phones How easy is that?  They just weren't accommodating did nearly 40 hours there and felt really left out... Women were mostly in late 20s early 30s - the Executives were my age.  Asked where I worked where my kids went to school - mentioned the arthritis thing got the up and down look...

SIGH will find a place that can take me on a "feeling fine" basis!  I will do it Thanks Georgia Girl if you can find a nice place I can too

[eyeamdry]

I was volunteering at an aviation museum one afternoon a week as a greeter.  I never thought I'd like being a greeter, but I did.  I have problems with knee replacements.  I had one 8 years ago and it began to act up about the time I volunteered at the museum.  I was on my feet most of the time and even if they gave me a sit down, it was too painful to walk around the huge building.

Then my other knee began kicking up and I had another knee replacement Nov 2 and am getting along quite well.  In another month or two depending on how I am doing, I'd like to get out again and see interesting ppl.  I see ppl from other countries, people fly into the museum from another city/state.  Kids come in school busses, elders in busses.  I do not have to babysit or do anything but be nice and helpful.  Lucy

[LizPetillo]

I hear ya ...

There is no one around and I don't volunteer anymore because I never know when I'll feel well enough to even do an hour AND I'm scared of the germs.  I've gotten to where I would rather be by myself at home then with people anyways .. they always want to eat things I can't eat and they talk and talk but it hurts me to talk.  So I'm doing my own thing by myself.  Kinda cloistered .... but that's just the way it is.   I do have an online chat place I go to ... that's about it.   

[SjoDry]

Hi Paperdoll.

I can certainly relate to your lonely feelings for various reasons.
Though I have not found the right Rheumi or received the "official" Dx, I just created a blog today: Sjodry and Parched- http://sjodry.wordpress.com/

I decided to chronicle my journey with Sjogrens. Even if I am my own and only audience, blogging will give me a chance
to educate myself; vent feelings & help cope with this journey. It can be very difficult to find consistently supportive people
who truly understand (or genuinely try to) what you are dealing with on a daily basis. None of us wish to burden someone with every detail of our
challenging lives...but it is nice to have that understanding person when you need it  I personally enjoy writing & think it will help counter some of
those lonely feelings. Good Luck!