SUPPORT OF FAMILY & FRIENDS??

[Bernice]

I was just wondering how others family and friends are supporting them. I'm sure it takes a while for them to become familiar with your ailment. For me it is quite differcult. My family are not very supportive, they have a hard time accepting that someone can be in such dire situation and look so well. One day up dancing and acting like a hyper school girl and the next bedridden. I come from a hard working family who prides themselves on being just that! I myself used to work 7 days a week / 12 hours a day! Not because I needed the money, but because I was raised to work. Men, women and children WORKED! Though as a child I was not as active as most in the family, I stayed sick a lot, which got a lot of attention some good, but most bad. I always felt like the sickly duckling. Went from doctor to doctor with some saying I was making things up for attention, well little did they know in a hard working family a sick one is received more a burden for those able bodied WORKERS. After hearing for most of my life I was the lazy one I was determined to push despite pain. I pushed myself so I went back to work a week or two after giving birth and ended up bleeding like crazy, I pushed so I worked two jobs then cut down and went to the one seven days a week. I HATED THE LAZY LABEL! Only now to go full circle and ending right back there, now that I simply can't work but part time which I really shouldn't. The truth be told I don't "LOOK OK" If they knew what they were 'SEEING" all those youth years they would've seen the many signs of at least the scieroderma I also have, if not sjogern's. Now I don't even bother to explain much to them, I have told them to at least get checked, They told me "they don't have time for that, they are not going to a doctor looking for a problem", "I need to learn to be thankful things are as well as they are" "Sometimes we can make ourselves sick just thinking about aches and pains, EVERYBODY got some pains!" :You and P@@@ (a sister w/lupus) hurt more than Grandmother did when she died at 95"

My husband of almost 30 years ain't much better. "You sure do like that bed", "You still in the bed". "I hurt too, but I have to work, I don't have the luxury of lying around all day" He told my doctor the other day "She went from 100 to 0 in no time, what can we do?!" He swears he's trying to motivate me.

I often feel so sad and alone, it's like I'm in my own crazy world.

Bernice

[paperdoll]

Bernice,

welcome hon!
Well I hope I have some good ideas - and I know people will add to it in a great way!

I've been told
not to hermit (I did this when I left my job)
not to spam (I sent out a letter to close friends and family - I don't know if that counts - when I was really flaring for a long stint - explaining why I wasn't around and that I still loved them all)
not to talk about it all the time (When people would ask I would try and tell them - now I ask if they want the short or long of it)
have a close friend or relative that is willing to have me call on a bad day - flare times (this is great advice - and their is the forum)
--- to which I have don't them all out of desperation - the good and the bad!~
One suggests not to change you Social Network pages if you are depressed )

I live chronicbabe com and butyoudontlooksick com for tips n tricks... I come to SJOGRENSWORLD
for the forums...

I think if we travel or go away to relatives homes - bring your Sjogren's books and leave them in the bathroom or livingroom say and if people want to look they can look.
And if your parents or brothers and sisters and best friends aren't really responding - I actually asked a friend after two years - "Have you researched Sjogren's yet?  Googled it?" and they told me they hadn't it crrrrrrrrrrrrushed me... and they tell me "but you look good" I said " Funny I feel like "The Scream" on the inside..."

Sjogren's world has great links you can send to people!!!!!!!!!!!!!!!!!!!!!!!!!!!  And or print out for them!

Alzheimers has the same amount of sufferes and Primary Sjogren's Syndrome.
Colorado has the same population as those who have PSS.
The City of Los Angeles has the same count of people as those who they say has Sjogren's.

I hope I've helped - but I just know more people will have nicer delicate or sassier ways of helpin' ya out with this!

You aren't alone kiddo!

Cyber hugs,
P.


I've been told that I can be as open as I want about Sjogren's because I don't want anyone else to suffer this alone like I had...
"That is THEIR problem if they don't want to listen hear see it - you don't want anyone else to suffer"
AND it has brought me closer to some distant friends - but it has also pushed some folks away.

There are business cards here on SjogrensWorld that we can print out on card stock from say Office Supply Store and some are perforated...
or I was thinking vista print dot com - they have some freeby days every month

Just Fine: Unmasking Concealed Chronic Illness And Pain (Paperback)
by Carol Sveilich
is a book I think I want to get!

[kimbo]

dollie, covered it all very well.

Bernice, We have all experienced the varied reaction of loved ones and friends. For me personally, I have learned to decide who cares to understand and who does not. This goes with everything not just my SJS issues.

Fortunately, My husband of 30 years is understanding and compassionate, my sister and daughters also. I do not elaborate to them on it. I have given brief information with appropriate timing.

Written brief articles if they show interest is great, because, most of the time what is said is forgotten, but what is read can be recalled better for those who are willing to care.

I am so sorry when there is little support of loved ones and friends for my fellow sjoggies.

It is good to be a part of a community of others who go thru so much together, on this board of sjoggies. I have found a lot of balance to this SJS issue, in hearing and knowing that we walk together and share our afflictions with compassion for one another.

I hope you find encouragements answers and understanding here. I know we can not make up for the deficit of your close loved ones.

But we can sure try. 

Blessings, kimbo

[missyb]

"I hope you find encouragements answers and understanding here. I know we can not make up for the deficit of your close loved ones.

But we can sure try.  Smiley"

I agree w/ Kimbo, sorry you face this. My husband wavers, he does understand I have "something" but he always thinks that it "went away" when the flare is over, so if I get sick again, he will say "I thought you fixed that" and he thinks the Dr is a failure LOL.

[Kirtida]

Dear Bernice,
Your message immediately struck a chord. Yes we Sjs sufferrers not only fight a chronic illness, often face unsympathetic doctors and also struggle to make our own family and friends understand just how Sjs affects ourlife. I am no longer the person I 'used to be' and that is difficult for all (including myself) to accept.

In the largely patriarchal social setup in India, a woman is always considered subordinate to the man.A woman's illness is, given lowest priority and when she is unable to perform her expected tasks labelled as LAZY, SHIRKER, GOOD-FOR-NOTHING etc.

Since the family is the first and most important unit of support for a patient, we at Sjogren's India have been making special efforts to encourage spouses and other family members to attend our Patient Support Group Meetings. We have found that many husbands are more inclined to be supportive about their wife's illness when they interact with other men in similar positions. Patients too are able to appreciate the support that their own families are extending to them when they meet other less fortunate patients. After several general interest educational programmes for understanding Sjogren's and how to cope with it, Sjogren's India is currently focussing on empowering patients to deal with the emotional and social aspects of chronic illnesses. A qualified Psychiatrist is facilitating this process for a group of interested patients and family members. It is still early days but I will keep you posted on the progress we make.

On the personal front, I have been relatively lucky for having a supportive immediate and extended family. But I needed to educate my family and friends. I have learnt to communicate  better with them and most importantly accepted my own limitations and have stopped feeling guilty about not being able to do what I used to. I am certainly not so brave and composed on all days... and my family and friends have their moments of being "ununderstanding'... but on the whole we have learnt to LIVE WELL WITH Sjogren's! After all this illness affects not only the patient but the family too.

[jpd54]

Since being diagnosed a year and a half ago, my husband has become really understanding.  My children, ages 21 and 23 are still trying to understand.  My mother lives over 15 hours away. I only see her about once a year.  She is still not sure what I am going through.  (SJS, fibro etc)   I got to see her last week.  Of course I looked like I was okay.  She saw me put detergent into the clothes washer.  We waited for the washer to complete the cycle.  My daughter went to the washer to change the clothes over to the dryer.  She called to me and asked me to come over there.  Much to my surprise, I never put the dirty clothes into the washer, just the detergent.  I started crying, and my mother did not know what was going on.  My daughter came over and put her arms around me and tried to tell me it would be okay.  My mom started to understand what I was feeling. 

Usually I can laugh at these "things" that I do, but sometimes a good cry helps.  My daughter has asked me before that if I say something wrong, can't remember the right word, or just do something strange, should she tell me.  I told her that if I looked like I would laugh, then she could tell  me.  If it looked like my day was not going well and I was about to cry, please just ignore whatever I said or did. 

It seems like the longer I am around family and friends, the more they see and understand.  Sometime we just can't tell someone. 

Family and friend are important during these "times", but no matter what we always have our friends here.

Laugh or cry here anytime.


    jpd

[navydad]

Being a SS sufferer has been rough on me,, I work with blue collar guys who only worry about wether there will be overtime on the weekends,, I have tried to explain what SS has done to me,, but like above said,, but you dont look sick, its been a rough couple of months for me since I have come back to work,, I;m just so tired whenI get home,, restless nights,, then the added thought of surgery coming up in august for this Chiari,, somedays I just want to curl up in a corner and just let the world go by without me,
  I really dont try to educate anyone anymore,, My wife,, God bless her,, she just refuses to read up on it,, my kids just dont get it at time,, age 22 and 30, so its tough on a male I think to have this.. I;m looked to as Dad,, Breadwinner and all around go to guy in times of crisis, somedays I just cant handle the stress of being the go to guy and just try to ignore the problem for a day or two till i feel up to taking care of it.

[ohiolady]

I think we all relate to this one.  I was just looking at a picture of me, my son and little granddaughter and I thought, I do really look perfectly fine.  Fortunately for me, my husband is very supportive and understanding.  At first, it didn't register but he was married to a type A, hard working, woman and he saw me change before his very eyes.

I think this board is very helpful and especially if you don't have supportive family.  My family is and I have very good friends but my friends really don't get it.

Anna

[ruby52]

My family is supportive thank goodness.It must make it even more miserable to have to fight that battle on top of the illness.Overwhelming I'm sure.Sometimes I say out loud that I miss the old me.My family does too.It hurts to see and hear how they miss me.There's not much I can do about it but because I'm aware of what they've lost too I try when I'm able to do small meaningful things.Lots of times I would rather space out of my surroundings or withdraw when we all get together but  I make the effort to be present to reassure them I'm still here.I don't worry about friends anymore.Not that much energy.I'm in my 50's though.
                           Ruby

[Bernice]

Thank you ALL for your encouragement, but most of all your understanding!

Navydad, My heart goes out to you, I can only imagine how extra hard it must be for you, you must feel totally overwhelmed, we all do, but I feel your pain of having EVERYTHING in your lap. I do realize single moms and those with young kids may share your extra burden as well. You remind me of a time when I felt especially lonely I remember just wanting to hide from everyone, including God, I just felt so tired of having to please everyone, but I have to go on despite how bad I think I feel LIFE IS GOOD! Just a smile from my grand baby, watching the ocean on vacations, the sun rise and oh Springtime! I love Spring! A good joke that makes me laugh my head off! and the knowledge that I am loved by family, friends (even though they don't always get it) and God. I hold on to a passage of scripture where it's said "His grace is sufficient!"

What are some things that you enjoy?

Guys,
My husband is really a good guy, he Loves him so Bernice  I must admit i am a handful at times can be quite a cutup and if I'm really hurting or tired I can be as stubborn as an Ole mule. He has plans to take me on an "grand evening out" at the end of the month when we go to Atlanta. I'll let ya know if it turns out to be  "ALL OF THAT". HA!

Bernice

[navydad]

What are some things that you enjoy?



I used to enjoy trout fishing,, but not my arms and hands dont work right,, cant cast the rod,,
Used to love working in the yard,, but now the sun seems to just cool me
Just got back from ENT,, he pulled up hte sural nerve biopsy report,, seems I have some axonal degeneration going on,, no wonder my arms and legs are becoming uselss,
I just dont enjoy much anymore,, its hard to go outside when its hot out
I dont have the strengh I used to have,, so I cant even mow my yard
I just ache all over, its a consuming pain,, never lets up,, along with the stomahc muscles not allowing fod to move through,,
I;m tired,, just plain tired,, tired of being sick,, tired of working my head off,, tired of people who just dont get it,,
I dont know,, I dont know what to say or do anymore,,

[Bernice]

Navy Dad,

I enjoy lots of things often times they are things that I have to do from my bed, such as writing stage plays, short stories, reading a good book or talking on the phone to a cousin that I have so much in common with it would scare ya! We both love to laugh about most anything, to include health problems. Don't get me wrong I do get down, in fact when I wrote this post I was down, But I love life, I love people,  I love to learn about most everything so to say there is never anything on TV is crazy, I enjoy watching movies, Discovery Channel, home improvement shows, Christian networks. I can read a good novel in a day so I keep those around. I used to enjoy working outside in my yard, but that's a bit too much for me now. When I am feeling good I direct plays and get involved in community stuff, sometimes from my bed on internet and phone!

Navy Dad please cheer up, it breaks my heart to hear you so sad. I do know living with this can be quite lonely at times, THAT'S FOR SURE, BUT!!!!!!!!!!!!!!!! God does always provide a means! If and when this forum is not enough for you, you GOT to find SOMETHING ELSE!!!!!

JUST KNOW THAT YOU ARE NOT ALONE!

IS THERE A SUPPORT GROUP IN YOUR AREA? THERE IS NONE THAT I KNOW OF IN MINE, SO I'M THINKING OF STARTING ONE! I THINK JUST PHYSICALLY SEEING AND TALKING TO OTHERS THAT I CAN RELATE TO WILL BE A BLESSING!

BE BLESSED!
Bernice

[beverly jane]

It took my hubby about 5 months to stop and take time to try to figure this thing out. As he saw my symptoms get worse he finally decided something was wrong.  My grown kids out of state, well gee they dont want to think of mommy being sick, I dont push it. they cant help anyway.   Worse is where I work as a nurse. I cant believe I cant get anyone there to understand and not push push push.... Guess its my fault cause I keep pushing through it.

[lighthouse33]

Sometimes I think it is very difficult on both sides of the coin. 

I have numerous books on Sjogren's and my family doesn't want to read them.  Doesn't want o hear about it.  Consequently they don't understand.  They did get a big wake-up call when I was hit with neurological symptoms.  I, myself, get tired of talking about it and blowing blue smoke in the air.  I just want to deal with it and try to forget about it as much as I can.  I'm not in denial because I've come to accept it but I do want to try to lead a normal life as much as possible.

On the other hand, I get really tired and irritated hearing about all of their temporary health problems.  One of my parents has had three surgeries this year.  They go on and on about this last one where the recovery time is four to six weeks.  Well, I'd love to have Sjogren's for four to six weeks and then be donw with it.  Unless you have a permanent medical condition like an AI or cancer I don't want to hear about it.

When the anger and pain set in as they are now in this current flare it is very difficult.  Thank goodness for this forum.  When I want to rest and relax to try to recover but can't because of obligations it's tough. 

My birthday is coming up and I'm dreading it mainly because I know I'm not up to it.  Going out to dinner to celebrate knowing that people will stop and ask said parent how they are doing and they will go on and on about thier said condition.  I on the other hand will keep it short and sweet and say I'm fine because that's how I look to other people.

[Bernice]

Lighthouse33,

I can for sure relate to what you said about family not wanting to know about your aches and pains, but if/ when THEY get so much as a snifful the world revolves total around them. I'm always listening and caring for someone, especially in the job I have. I don't mind caring for others, But I very seldom even get asked how I am doing. On the one hand I don't mind bacause I am not used to talking about me, I don't like a lot of attention placed on me.It's just sometimes I get tired of being everybody's problem solver, sometimes I need somebody just to comfort me, to reassure me! I do kind of get tired of having to ignore my pains in front of others just to please them, sometimes I just want to SHOUT, LEAVE ME ALONE, I DON'T FEEL GOOD RIGHT NOW!! "No my not wanting to go with you all for a Family short trip to Disney World, driving 12 hrs. one way for the weekend, in the middle of Hot June on a weekend when there's like a million people and bring back an active 2 year old grandchild home with me for a month long visit, while still having to work" does not mean I am upset about something or just pushing you away, THAT'S TOO MUCH FOR ME TO ENDURE!" Well needless to say I WENT, CAME BACK WITH THE VERY ACTIVE 2 YEAR OLD AND THOUGHT I WAS GOING TO DIE FROM THE WHOLE MONTH LONG EXPERIENCE! YOU TALKING ABOUT PAIN & EXHAUSTION??!!! EVERY FIBER OF MY BODY WAS HURTING AND DRAINED!!!!!!

Bernice