my family is saying im too demanding.. ive changed with this illness..thoughts?

[valene2009]

i guess i am way more needy now.. i guess i need to start dating or something cause my sister and my parents have said i am too demanding of them..  i guess i need to get a life. i cannot work anymore. am 37 years old.. just got approved for SSD which is great news -i have friends but havent dated in awhile. i used to live 2000 miles away for 10 years...since i've moved back to my hometown and after a year and half of not working i guess i have become too demanding on people's times--like their lives revolve around me.. i know they don't but i come across that way... i will call my sis (who works full time, married and has 2 small kids) and i will ask her if she got my msg and then ask(nicely) why she didnt cal me back..

i know i can work on this with my therapist but does anyone else go through this??? i was never like this before sjogrens--- i was so carefree / a free spririt-and of course after college i ran off to California and got my own life.. now I feel so NEEDY.. help people!!!  i welcome any suggestions!!!!

[Joe S.]

I try to take care of myself as much as possible and help out at home with what I can do. I know that it has been betting less over time. It is just my wife and myself at home. We do what we can for our daughter that lives in Burnsville. I think it is too much baby sitting but my wife enjoys it. She still pushes herself to be a super mom.

Find a local support group for Sjogren's. It may help to talk to others in person.

[eyeamdry]

Valene, do you live with your parents or by yourself?  I may have missed it in the post.  If you are living with your parents, get your own place.  I have a single daughter, no kids, who just started getting SSI.  She has her own place. We would probably not get along well, her father and I with her here. And vice versa.  If I'm off on this, just skip it.  If you are your only interest, maybe they have a point.  I'm talking about "illness interest."  Good luck sweetie.  Lucy

You need to get some volunteer work also, whatever helps you.  If you live alone, can you have a dog or cat?

[amberjolie1]

Hi valene2009,

Along the lines of what Joe is saying - if you can find a support group in your area, perhaps you will find some friends who can understand what you are dealing with, since they're dealing with it too.  It may be more of a give-and-take relationship, since they will need the same things you do.

And definitely find something else to occupy you.  The volunteering would be a good idea, since you have to focus on others, you can't avoid it, and it may help draw your attention away from yourself from time to time (not that we're not allowed to be needy from time to time )

[KellyG999]

My situation is different, as I have a job, husband kids and dogs who need me. I probably push myself too hard so I don't appear too needy. Sometimes, though, I have to stop everything and go to bed. My husband knows I need the rest and encourages me to do less.

On the other hand, I have a sister with emotional/mental problems and I think she is way too needy. She always sounds pathetic on the phone and seems to thrive on sympathy. I would totally hate that! Anyway, whatever you can do to create a little distance may help.  Maybe a rec center where you can go a few times a week to walk, stretch, swim or soak?

When I feel needy because of Sjogren's, I come here. Everyone here "gets it" and that way I don't overburden my mother who worries so much already.

HUGS!
KellyG

[Meld256]

Hi valene,

First of all:  Of course you've changed with this illness.  I think it's impossible for us not to!  It's a big change from working at a "normal" job to being on SS Disability.  I just went through this recently.

Secondly: I think we can get "consumed" with all our illness issues.  Also, just my experience has been that for a while I was a bit bored with myself and expected my husband or those around me to "entertain me", for a better way of putting it.  Then I realized I need to make my own way of enjoying myself.

Maybe it's time to reinvent yourself.  Perhaps research some things you've always wanted to do, or learn. It's amazing to me; I started out being bored some days, and now it seems I have so much to do or at least want to do, that I'm rarely bored. 

And don't forget.  We all feel a little needy sometimes, and that's when you can come here and know we're with you, and will listen. 

Take care,
Melinda

[mshistory]

Yes, SjS definitely changes us. I'm fairly young too (32) with a husband and two young children (4 and 2) and I absolutely hate how utterly exhausted I am so often, and feel it's so unfair to all of them.

I think it's a great idea to find something to focus on besides your illness - whether that's volunteering, joining a local support group, book club, etc.

Here's hoping we can all find ways of coping and managing our disease 

[valene2009]

thanks everyone..yes i live alone. i have a cat.. i have friends.. etc.. there are no sjogrens support groups except 3 hours away. i also have issues with support groups  because most places have flourescent lights which make me really really sick...

i have taken up knitting again and i read when i can. it sounds like i just need to get a life. thanks for letting me vent on here.

[warmwaters]

Getting involved in something that interests you helps - I joined a book club, and met some new people that way. It's low stress - once a month. But it could be any kind of activity that might interest you - a knitting club, some kind of craft,  a charity, a political or religious group, etc.

Whatever works well with your needs - for example, I joined a couple of groups that meet at night, and discovered I was too tired to do them. So now I focus on groups that meet during the day.  I find it takes me out of myself and my situation to do things with others.

Just one other thought - when you do talk with your family, you should make sure you don't forget to ask how they are doing, what's new with them, etc. I'm not saying you don't already do that, just it can be easy to get very focused on what's happening with our latest medical woes. I know how easy it can be to go there.

Hope things improve.

[soycoffee]

i guess i am way more needy now.. i guess i need to start dating or something cause my sister and my parents have said i am too demanding of them..  i guess i need to get a life. i cannot work anymore. am 37 years old.. just got approved for SSD which is great news -i have friends but havent dated in awhile. i used to live 2000 miles away for 10 years...since i've moved back to my hometown and after a year and half of not working i guess i have become too demanding on people's times--like their lives revolve around me.. i know they don't but i come across that way... i will call my sis (who works full time, married and has 2 small kids) and i will ask her if she got my msg and then ask(nicely) why she didnt cal me back..

i know i can work on this with my therapist but does anyone else go through this??? i was never like this before sjogrens--- i was so carefree / a free spririt-and of course after college i ran off to California and got my own life.. now I feel so NEEDY.. help people!!!  i welcome any suggestions!!!!

Thank you, Valene. You put your finger on a major concern of mine. I know how needy I am in this location, and I will only get needier as time goes on. I can arrange for personal care assistants, here.  BUT I am beginning to but my daughter, wanting her to respond to many physical complaints, or just give me a "noted and logged" response saying that she's heard my existential wailing. But she won't do that when it concerns physical complaints. When it involves the planned move, and when I don't phrase it as a demand, and when she can do it as she has time to do it, then all those things lead to her wonderful response that chimes in with my frustrated feelings about some situation or other. I'm trying to learn what works.

When/if I move 1800 miles away to my daughter and son-in-law's location, I want to avoid being dependent on them, or whining about seeing my grandchildren -- but I don't have a car, and may need help to get to doctor's appts, etc, or when I have a flare.

The plan is to move to a different town, with more services, about 20 minutes of easy driving away from where they live.
** Arrange with the municipality for personal care attendant service -- for people with disabilities, usually regardless of age.
** Pick an apartment building that has wheelchair accessible housing, even if you elect not to get it. I tried one, and mentioned that I use a wheelchair, and practically got my head handed to me, as potentially undesirable. In contrast, places that have apartments designed for independent living from a wheelchair, are generally happy for me to apply -- if they will pick up the phone!
** Learn the available transportation systems
** Find the local library and hang around, attend groups that meet there (during the day, as one poster mentioned).
** Volunteer for telephone duty for an organization I like, are enthusiastic about, care about.
** Voluteer as a hospital visitor at a hospital near me. I have a story about that, but won't add it to this post.

I hope these strategies will work for you as well.

Best,
Soycoffee

[valene2009]

Hi there Soy,
I relate to you so much. I have decided not to burden my parents and sister so much.  I too feel that I want them to "listen' to my complaints about my illness--but really what good is it?  This forum is great for that!  you and I always have that!  I think most people who don't have the same issues try to relate but it wears them down-they also know its not healthy to go on and on about how bad we feel-cause not only does it make  them feel worse but it makes us feel worse too..

good for you deciding to be as independent as you can!  those are some great things you listed-i too plan on volunteering.. I have been knitting again-making things for people and reading when i can.  I also take advantage of the days when i can get out to get my errands done. If i need help i will ask but i have to learn not to overwhelm others or be so demanding!!!  Like for instance i need a ride to a new Rheumogolist i am going to in Jan. It's 45 miles away-too far for me to drive even on a 'good' eye day.  So i askd my brother in law-he said no problem.  but i knew to tell him that if his work schedule changes i can also change my apt date and time...

thanks to everyone's suggestions. I think just being able to "talk " about it on here has led me to understand how i can be demanding and i have to realize everyone has a life just like we all do too..

love
val

[artsyamerican]

Wow...some really great responses.  I don't think your family is sick of your complaining....I think maybe they just feel helpless to "fix" things for you.  I have felt the same way in the past and decided to keep my whining to a minimum. I began to notice is was truly upsetting my children - they were really worried about me.

I too have recently gone out on private disability and have had to reinvent my day!  I have taken up crocheting again! I am making beanies for family members....they are fairly quick...and I don't have to strain to see what I'm doing.


So...hang in there and try to be positive around family members as...they want more than anything to think of you as healthy and happy.

[stephL]

Valene, when I was in somewhat better health, my father was sick during the last year of his life and he needed a lot of care. He rarely had to ask for anything because I just showed up and did what needed to be done to make sure his needs were met. I would have never dreamed of telling him that he was "making too many demands" of me. And if he had made unreasonable demands, I would have found a polite way to say no.  Although caring for him was a difficult job, it was a satisfying experience and my Dad and I developed a closer relationship as a result.

From what you've described, I don't see any inappropriate behavior on your part, it seems to me that your family doesn't seem to be taking your situation seriously enough. I'm sorry you have to go through this and I hope they will adjust and be more supportive in the future.

[LizPetillo]

Sorry, but sounds like your family isn't very thoughtful.

I had best friends who were like that ... even after explaining my illness and everything that goes with it, they said I had to be 'exaggering' being sick ... I cut ties and haven't spoken to them in a year and a half now.  It was a shock, but I guess illness weeds out the real friends from the shallow ones.  Must be the same with family ...

[Narablueeyes]

Sorry, but sounds like your family isn't very thoughtful.

I had best friends who were like that ... even after explaining my illness and everything that goes with it, they said I had to be 'exaggering' being sick ... I cut ties and haven't spoken to them in a year and a half now.  It was a shock, but I guess illness weeds out the real friends from the shallow ones.  Must be the same with family ...

Yeah it does Liz.  I don't know which is more painful:  the Sjogren's or losing friends and family.