Having endured the insidious symptoms of Sjogrens for over a year, I have come to learn something very important when it comes to loved ones who worry about us. In my life it is my husband who witnesses my daily struggles and pains. The other day I looked into his eyes and what I witnessed was weariness and worry. It occurred to me then that whether I liked it or not, it was up to me to set the tone in my household to allow my loved ones the freedom to laugh and simply be themselves, even in the presence of my pain.
The most valuable personal experience I can offer here is that my attitude toward my illness has a direct, immediate impact on those I love. So, I have started to introduce as much humor as I can when with loved ones to, in essence, give them permission to enjoy life and life with me even while living with this very difficult diagnosis.
Hi MrsCrary and thank you for your thoughtful response. First, I hope and pray that your husband feels some relief from the strain he has been going thru. Also, my husband also has "x-ray emotional vision" and can see what I am doing. But, after a while I do get him to laugh and even be silly. I have the utmost respect for how difficult it is to set a fun tone when one is in pain. I guess I just know of no other way to manage my situation than to laugh when I can. But, please be assured that there are just times when I can't muster a laugh. I think we all in this forum are just doing our best and this is all that really can be asked of us. Hugs to you and your husband....Cheryl
WOW, you just described what I'm experiencing with my family. My husband is very vocal about me over doing it and becomes frustrated. I recently had a meeting with all my siblings to explain my disease and reason for my absence. It's taken me 3 years to understand and except my own limitations. I've had to limit my travels and select my activities carefully. Today I park in the handicap spaces, us the elevator, and take advantage of the wheelchair service in the airports. I celebrate my good days and use my "bag of tricks" on my bad days. My family and friends are on the way to understanding. Thanks for opening up this discussion.
Sjogrens affects everyone differently. Is the common factor for everyone the “fatigue”? Today I was riding with a co-worker to a meeting. She located a parking space that seemed to me 2 football fields away from the entrance. Whenever I try to explain my limitations to anyone I get a puzzled look. So I simply asked her to drop me off at the entrance. Im still trying to find a simple way to explain Sjogrens, or is there one??
Terri, how in the world do we know hat is Sjogren's, what is lupus, and what is Fibro? People keep asking me how I know what is happening at any given time and I have no answer. Reet
Tez_20 said:
Well my hubby is 10yrs older than me and loves me to bits and he's took on several things i used to do...everyday he's telling me to rest and if i'm not well enough he stops other people he knows from coming around the home...he's got health issues himself which he's been neglecting for a while until i told him to get himself sorted and thankfully he's finally doing it slowly but can he stop NO everyday he as to be active but BLESS HIM and i must say this he's cheerful all the time and tries hard to make me laugh as he's such an easy going person and he's living with a nightmare who's serious besides a bad fuse within seconds.
Terri, how in the world do we know hat is Sjogren's, what is lupus, and what is Fibro? People keep asking me how I know what is happening at any given time and I have no answer. Reet
Simple. It doesn't really matter. Not so much with the fibro, because that doesn't involve inflammation. But for the rest of them, it is an increase in inflammation that is causing increased symptoms. The names of the diseases are given, but they all function in similar ways. . . It's just a question of exactly what is being inflamed at any given time.
Thank you, Stony. So I hurt for a variety of reasons and never know what is happening? That is pretty much what I thought! LOL Reet
Stoney said:
Reet- You asked:
Terri, how in the world do we know hat is Sjogren's, what is lupus, and what is Fibro? People keep asking me how I know what is happening at any given time and I have no answer. Reet
Simple. It doesn't really matter. Not so much with the fibro, because that doesn't involve inflammation. But for the rest of them, it is an increase in inflammation that is causing increased symptoms. The names of the diseases are given, but they all function in similar ways. . . It's just a question of exactly what is being inflamed at any given time.
You are right, Terri, about the rheumos not giving info. It his horrid that they don't have a dedicated "someone" to give "info sessions" to people about these diseases. I think the docs think that if we knew all that there is to know that it would be too much knowledge for us. How wrong they are! Thanks, Terri
You know I sent that to several family and friends and many said that it helped them to understand, others already deal with issues like we do here, and others told me that lupus isn't the only thing that can make one tired. Working long hours does too. I just agreed with them rather then telling them the difference. We can't explain it because I have worked very long hours too in the past and there is a big difference.
I have stopped feeling sorry for myself it was affecting my family I was in to much pain to realize it I don’t think my pain has stopped but I have to continue to live !
I second what Tez 20 stated. I think at some point we all realize that living with pain is a fact of life and that our attitudes, whether we like it or not, do impact no only ourselves, but all the loved ones around us. You do have a great attitude. Thank you for sharing it with all of us. Cheryl
Tez_20 said:
Great attitude Maggymae especially about having to continue to live...that's all we can do :)
Maggymae said:
I have stopped feeling sorry for myself it was affecting my family I was in to much pain to realize it I don't think my pain has stopped but I have to continue to live !