Author Topic: Family not much support  (Read 24168 times)

inga

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Re: Family not much support
« Reply #45 on: February 17, 2010, 12:14:08 PM »
When people ask how you are, it is more of a greeting.  I honestly don't think they want a play by play.   I don't discuss my illness unless some one specifically asks me about it, or specifically asks if I am 'doing OK'.  The last thing I want to be remembered for is my disease, or 'complaining' about it.

There are times that I have to turn down responsibilities, then I tell people for example, 'It is just too hard right now due to my illness.'  Period.

I remember when I was young and some older relative was talking about health, it went in one ear and out the other.  Younger people don't want to hear about disease.    Older people don't want to think about disease affecting them.  Other people still don't feel your condition is significant....because THEY have (insert whatever disease you want).  I have found that people want us to keep our suffering to ourselves, or suffer 'heroically, happily and most of all silently'. 

Most people want to talk about themselves and if you listen, you are real popular.

ros

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Re: Family not much support
« Reply #46 on: February 17, 2010, 01:15:24 PM »
oh I know just how you feel! As you can see I am new to this forum and have found it so great. My family are wonderful, but they don't really understand and think I look I look a "Picture of Health".  When I try to explain, I think I sound like a hypochrondriac! It just all sounds so weird and non of the symptoms seem to connect. I have not told anyone, except my immediate family that I have Sjogrens, because I think they will think I am going off my head.

,My husband knows that there is times I'm battling and is, I must admit getting better in his attitude to this.

Just keep coming back here, it sure helps!

beverley

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Re: Family not much support
« Reply #47 on: February 18, 2010, 11:55:33 AM »
I think one of the hardest things is that people ask how you are and when you reply with:  I am exhausted because of the fatigue I get with SJS, or my joints really ache, or whatever, they come back with 'I know what you mean.  I feel like that as well.  It's the time of year isn't it?'  And you think - does everyone else feel like me?  Am I just inadequate because they all cope with it and I can't or is there really something different about how I feel?

And you know what - I can't answer this question because I only know what I feel like.  It just eats you up this disease.

Beverley

louise

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Re: Family not much support
« Reply #48 on: February 18, 2010, 08:42:54 PM »
Beverly, It sure does eat you up. Some days it feels like it eats me up then spits me out grabs me back and swallows me up again and chews really really hard!
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Bernice

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Re: Family not much support
« Reply #49 on: February 18, 2010, 08:55:14 PM »
No one has ever heard of this disease...but they have almost all heard of lupus. Maybe if we explain it first thing as a variation of lupus, there might be some understanding. Even though that's not technically correct, it won't sound like it's psychosomatic, or something we can overpower through sheer will.

I think it is important that the correct name is given, that's the only way that it will be aknowledged. People may not remember it even after you have told them, but the more they hear it the more it will be known and recognized as something to be taken serious.

I tell them I have Sjorgen's and autoimmune disease that mimic lupus, ra, and ms. I have NEVER met anyone who have ever heard of it except my doctors. ALL are like WHAT IS THAT? They almost always want to know more.

WE HAVE TO SAY THE NAME!

Joe S.

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Re: Family not much support
« Reply #50 on: February 19, 2010, 03:44:18 AM »
Bernice , There is a cartoon bubble in the tool bars that can be used for quotes.
Quote
Second from the right in the row above the smiles
High lite text to be quoted and hit the button.
I keep learning new things about how to use this forum every week.
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Bernice

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Re: Family not much support
« Reply #51 on: February 19, 2010, 07:55:20 AM »
Bernice , There is a cartoon bubble in the tool bars that can be used for quotes.
Quote
Second from the right in the row above the smiles
High lite text to be quoted and hit the button.
I keep learning new things about how to use this forum every week.


Just checking!

Billydude

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Re: Family not much support
« Reply #52 on: February 19, 2010, 11:51:54 AM »
I think that noone can really understand unless they experience it themselves.   My motto is "If you don't expect anything from anyone then you can't be dissappointed".   I think we all have gone through the grieving process for our old selves and we learn to accept it and manage it.   Time will make you feel better.

navydad

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Re: Family not much support
« Reply #53 on: February 19, 2010, 01:10:45 PM »
1  I refuse to stop grieving for my old self,, there are to many reminders around me that tell me what I was able to do before
2  I refuse to just sit back and accept that this is it and theres no looking back
3  I refuse to stop beating on Doctors doors, or calling them so often they get sick of me, and telling them , ,Look if you dont kow,, you find me someone that does,, quit blaming everything on SS
4  I refuse,, to use the saying,, Go quietly into the night, I intend to make the medical profession aware that we suffer and want answers
5  I refuse to slow down,, I might not be able to drive a nail anymore without smashing my hands,, but I;ll keep trying,, I may not like what it looks like afterwards,, but I dont care
6  I refuse to never stop reminding my family that Dad has a autoimmube disease and that they need to understand and learn about it,, read Dam It, look it up and read what it does to me,,
7  I refuse to keep taking meds that do nothing except make me sicker, and lighten my wallet,, I;d rather not take anything,, but some are necessary
8  I hope I havent stepped on anyones toes

Epson

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Re: Family not much support
« Reply #54 on: February 19, 2010, 02:24:40 PM »
Billydude,

I totally agree with your statement, now if I could just get that medical marijuana this would all be a lot easier to handle 8)  I know a lot of you guys are into herbs and natural remedies, but I never see any mention of cannabis being used to relieve pain for autoimmune sufferers, especially if you can't take NSAID or aspirin.

I'm pass the anger stage or the why me stage, just give me a couple of hours with no pain or worries, is that too much for a man ask for ???

navydad

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Re: Family not much support
« Reply #55 on: February 19, 2010, 03:35:08 PM »
Epson,, I agree,,just a few hours of no pain,, no,, thats not to much to ask for, just a few hours,

Scottietottie

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Re: Family not much support
« Reply #56 on: February 19, 2010, 05:58:17 PM »
Hi Navydad

I admire your fighting spirit but you are soooo still grieving and so far from acceptance. Acceptance doesn't mean 'lying down and taking it' - there is still a lot of fighting to be done. You are never going to be like you were before though. There is no cure. It is possible to feel better than you do now though. Bitterness and anger don't make anyone feel good.

Take care - Scottie
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louise

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Re: Family not much support
« Reply #57 on: February 19, 2010, 08:13:02 PM »
Navydad, I like your comments. I'm not giving in so easy either. I also agree with family needing too educate themselves . When I found out my husband had high blood pressure I took it upon myself to find out all I could about it. All the causes ,food that were good for him or bad and so much more . I kind of thought he would do the same. But he read on thing on line and that was that.Then when I had other symptoms that were not in that article he didn't think it could be related too sjogrens. I keep trying to do everything I can. A few thing I can't do but most I can. I am a lot slower and it may take me twice as long but sjogrens is not taking me down without a huge fight. Even when I feel like spending the day just laying around I force myself up and around . I usually feel much better then. As for pain, thank God for percocet and voltaren it is just a part of my daily routine now. Some days it just takes the edge off but it is amazing how your body just gets used too .pain and you learn too function.
primary sjogrens, adderall xr, diclofenac ,vitamin d3, percocet, b12,b6, omega3, ibuprofen, protonix, voltaren gel, lots of sugarless gum and candy.

Billydude

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Re: Family not much support
« Reply #58 on: February 19, 2010, 09:06:13 PM »
Epson,  I live in the heart of the medical marijuana area and I'm always around it.   However,  with our disease it doesn't really help much.   Not long ago I made brownies with it and had the worse experience ever.   Usually it just makes people sleep but I was up all night.   Seems the getting high part effects our nervous system and thats what makes us high but when Sjogrens effects your CNS like it has mine it is magnified ten fold.

Bernice

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Re: Family not much support
« Reply #59 on: February 19, 2010, 09:21:15 PM »
Billydude, That was funny! Oh well ya tried and lived to tell about it! I would think it would have those of us that deal with anxiety in a very nervous state like being on a horrible amusement ride, Lord I would hate to imagine that going on all night long. ::)