Family not much support

[Joe S.]

As I may have said in other posts, They just would not know how to respond. Change your problems into challenges. Ask them how they are feeling before they can ask you. Besides it throws them off guard. Remember "helping you helps me".

[harlin]

Thanks Joe I'll give it a shot

[ScottishLass]

That's such a shame Harlin.  and I do know that all too many humans seem so tied up with the rat race and in their own personal bubble at times that they just sometimes don't think........ (and I guess we are all guilty of not asking others at times......or not really genuinely wanting to know the reality of their day/life, or perhaps not having the time to offer a listening/empathic ear from time to time....I try so hard not to be one of those people but am sure I've been guilty of it on many occassions).....The Human Race eh..... AAaaaaahhhhhh, that's why I love animals so much.....lol... Give me a room full of dogs any time and I'll give and receive all the warmth and love I need
 Well how are you Harlin...you are with folk who genuinely want to know and care here? 

[jordozmom]

You know, here is the funny thing - I tried the "I'm fine." response, only to have it come back in my face later when I have a flare or miss a function or miss work.  People will say, "But you've been fine for a while now."  Umm, no, people - I pretty much hurt and am dragging every single day.  There are never days where I feel "good" anymore, there are just days where I feel "less bad".  So now when asked how I feel I say, "Oh, you know.  The usual Sjogrens stuff.  But I'm making it!"  I think it doesn't hurt to remind these people who think you should "suck it up" that we are actually "sucking it up" every single day and it actually makes me feel in a way like I am stronger than those people because I am doing everything despite the pain and fatigue and the disease. 

[Bernice]

Jordozmom, THATA GIRL! HERE! HERE! I so agree, I see us as strong willed people, especially when I hear people complaining about a wet nose. I think to myself try dragging around a stubborn and rebellous body everyday! Feet that don't want to touch the floor, teeth that don't want to chew, brain that don't want to be bothered with most things I'm trying to pay attention to, legs that dont want to go where I want to go, hips that don't want to sway, back that don't want to bend, arms that don't want to reach, hands that don't want to grasp anything harder than cotton, eyes that have to be forced to see, skin that don't want to be touched, and TOES that just make you want to cut them off in one swipe! And the list goes on, and on!
But I'm here ready and willing to work and do most of the stuff you won't do! I think to myself!

[harlin]

Scottishlass
Thank you for asking!! I am still hurting all over especially my legs and ears and hand, pretty much all over. See the Rheumy on Tues. don't think anything else can be done they have tried about everything. I don't know if they even listen anymore. Watched the gkids yesterday and it takes me 2 days to recoup. Went to be at 8. Slept till 7.
Thanks everyone for listening!!!!!!!!
harlin

[ScottishLass]

Good luck for Tue appt Harlin.
Let's hope they get to the bottom of the problems soon for you
Take care
Hugs
Karen

[beverley]

Harlin good luck at rheumy on Tuesday, you've been so kind to me and you're suffering yourself.  I feel ashamed I didn't ask.

Louise, I am lucky.  I don't know what I would do if my husband wasn't so supportive.  Admittedly he needs me to well enough to go to work as he is a self employed gardener and cannot pay the bills on what he earns, but even without that he is a very kind and considerate person.  My grown up boys kind of tolerate that I have 'problems', but it is my Mum who really doesn't get it.  She asks me if I am okay and says I mustn't overdo it, but she I think she has the idea that one day I won't have it any more.  My colleagues at work are good, but they don't get the fatigue side of it all, so sadly I play up the stiff joint bit more because they understand that better.  But - it is really important to have one person you can talk to - that's why it's so good here - coz there are dozens of people who understand.

Hope things get better soon.

Beverley

[louise]

Beverely , I know what you mean when you say your mom thinks one day you will get over this .My husband made the comment too me that I will get thru this just like everything else I have had go wrong with me and have gotten better from. I think I have given everyone the wrong impression of my husband  .He really is a great guy. We have been married 28 years and had a lot of great times. This has been very hard for me too accept .I am usually very energetic and the one who pulls the house and family together. My husband and I have had a few talks about his reaction too my illness .I have learned this is also hard for him to think I am this sick and in this much pain every day. Also all these meds I am taking really mess with my mood. Depression is very bad for me lately. I have always been so quick too look at the positive in life .So I don't understand this at all .I do think I over react at times.Also my husband has always treated me as a princess so when he seemed uninterested I couldn't figure out where this was comming from.It sure helps too get it all out in the open. I'm still working on my kids.It would be great if this would pass.

[harlin]

Thanks Beverley
Everyone here is so wonderful, they are all have such problems you hate to complain. I would like just one day without pain. Just one.
I am glad your family is so supportive. My mother like yours does not understand either. It is just easier not to talk about it. But sometimes it eats at you.
Hopefully Tues I will get some answers. at least some new meds. I think they are going to try Savella.
Weather doesn't help much either we have about 15 inches and expecting more this week.
yeck, come on spring. I need some heat.
hugs harlin

[Rostradamus]

Epson is right, but my cats are great too.   Families just don't want to hear it. It's so comlex and would take an actual effort to understand.   I use analogies alot; to try to relate it to something they can understand.    And ask them if they've ever been sick over a week, how about two?   Then bluntly say, "I have this for life. I can no more get rid of this than you can get rid of your small pox vaccination. It is chemically hard wired into my immune system.  I didn't ask for this unheard of plague. But it is, and I'm stuck living with it.  I just want as much of a normal life as I can have. And I'm trying as hard as I can."   If that doesn't get through to a person's compasion, shame on them and their soul.     Here we understand. I only wish I could give you a hug you so greatly deserve.   I'm so sorry. I know it can be a very loney thing.  Rosstradamus

[Rostradamus]

Epson is right, but my cats are great too.   Families just don't want to hear it. It's so comlex and would take an actual effort to understand.   I use analogies alot; to try to relate it to something they can understand.    And ask them if they've ever been sick over a week, how about two?   Then bluntly say, "I have this for life. I can no more get rid of this than you can get rid of your small pox vaccination. It is chemically hard wired into my immune system.  I didn't ask for this unheard of plague. But it is, and I'm stuck living with it.  I just want as much of a normal life as I can have. And I'm trying as hard as I can."   If that doesn't get through to a person's compasion, shame on them and their soul.     Here we understand. I only wish I could give you a hug you so greatly deserve.   I'm so sorry. I know it can be a very loney thing.  Rosstradamus

PS check into Fish, Flax, Borage oil to help protect from nerve damage.  There is much on my previous posts; what can help and where to research it. Doctors don't take that much time with use and usually don't know holistics or the tricks learned from living with it.

[Joe S.]

When people ask me how I am my usual response is "I'm alive" or "I'm alive, how are you?" If it throws them, they will ask about my responce; otherwise they will list their complaints which is usually the reason they asked in the first place.

[meow]

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.

[RobinBat]

Also March issue of Ladies Home Journal has good article on autoimmune and mentions sjogrens with out glossing over what we go thru....