Project

[McKorky]

Hello everyone:
I've mentioned before on here that I was doing a Search paper. Well I have a question for all of you:

How would you tell a person, that is new to having Sjogren's, how to live a normal life?

Leave your answers below!

Thanks in advance for all of your help!

[SjoDry]

Take it a day at a time. You never know which symptoms you will wake up with.
You must deal with the hand you are dealt on each day. I tell myself the only thing I have control
over is my attitude about how I deal with my illness. I can make a choice to whine & complain or
I can make a choice to have the best kind of day that I can given whatever I have been handed on that day.
I also think that educating yourself on all aspects of Sjogren's Syndrome helps in setting appropriate expectations
and advocating for oneself. And lastly, have a sense of humor as much as possible.

[Tantalus]

Treatments don't work for all people, but, if you don't have negative reactions give them time, even if they don't seem to be doing anything.  Sometimes improvement isn't measured even month to month but in time you might realize you are feeling better.

[Jellyb]

It may feel like a lonely journey at times, but don't let define you.

[Karen13]

What is normal? It is always changing and redefining what is normal for you is part of living (with or without Sjogren's). Live the best life that you can, it's all anyone can do.

I also agree with all the other posts!

[THE BRIT]

  I agree with the taking each day as it comes and accept that things that once were easy might change and to accept that medication may come in more than you want.  To understand that there are good doctors out there who can help you maintain a good quality of life.  To keep a postive outlook and I also agree with not letting it define you. 

[warmwaters]

Define normal?   If normal means the life that I had before Sjogren's then that is not possible (for me given my specific health problems).   If normal means a "typical" life with enough energy to work, have a social life, and make a living..... then that is not possible for me.


I'm not trying to be difficult, I'm trying to understand what you'd like to know.

Please understand there are a wide range of symptoms for Sjogren's -  for some certain medicines and supplements may help sufficiently to live a near normal life.  For others there is profound exhaustion, nerve damage, lung damage, and other very serious problems that make a "typical" or "normal" live no longer possible. 

For those of us who have life-limiting problems, we try to find ways to to deal with this "new normal", which is in its own way is a fascinating set of adaptations.

So, what kind of paper are you trying to do, and what do you want to know?  I'd be glad to help.

[Duchess]

Take one day at a time - even one moment at a time. You never know what kind of hand you will be dealt or how many spoons you may have. (The Spoon Theory).

Each person has to find their own "normal".  Allow yourself to be flexible. Allow yourself to ask for help and support.

Learn how different treatments, medications, activities, etc. affect you.

Love yourself and communicate with God!


Duchess

[McKorky]

Define normal?   If normal means the life that I had before Sjogren's then that is not possible (for me given my specific health problems).   If normal means a "typical" life with enough energy to work, have a social life, and make a living..... then that is not possible for me.


I'm not trying to be difficult, I'm trying to understand what you'd like to know.

Please understand there are a wide range of symptoms for Sjogren's -  for some certain medicines and supplements may help sufficiently to live a near normal life.  For others there is profound exhaustion, nerve damage, lung damage, and other very serious problems that make a "typical" or "normal" live no longer possible. 

For those of us who have life-limiting problems, we try to find ways to to deal with this "new normal", which is in its own way is a fascinating set of adaptations.

So, what kind of paper are you trying to do, and what do you want to know?  I'd be glad to help.

I'm writing a search paper on How I can try and live a normal life with Sjogren's. I'm not picky on what the "normal" is. Just what you would want to tell/ give advice to a newly diagnosed person and what they could do in order to maybe help with the disease.

I was diagnosed this past august, and I was 19 at the time. I don't know what to expect in the years to come and that's basically what my question is. Can I live normally(before all the symptoms), somewhat life? Will I have to change my life style has the years come?

Basically what advice would you give to someone in my place right now.

[CMNK12]

HMMM. That is tough knowing what I know  now. So I guess you have to learn to appreciate each day and each moment that you feel good. You also need to be very pro-active about treatment and complain, if that is the right word, about frequent flare ups.
Rest is essential, being kind to yourself, saying no to things that don't matter. These things will keep you close to normal. Recognizing that stress is not your friend.
I went full tilt for so long and wore myself out. I thought I could not surrender. I don't know if now I am reaping what I have sown? My advise is to listen to your body and don't let people bully you into things that don't matter.
I think you can lead a full life but everything in moderation. Get a good doctor and a good medical management plan.
The other thing is have a short to do list each day, do the top 3.  Most stuff we want to do is just that:STUFF.
Stop and smell the roses, enjoy your life where it is right now, it is short and always changing. CK

[susanep]

Live one day at a time. Have a good sense of humor. Take care of yourself, and be good to yourself. Don't worry what others have to say. They usually don't understand. Find new little things  you enjoy doing or  adjust those things you liked before. Understand that how you feel can change not only from day to day, but moment to moment. You also will have good days. Get plenty of rest when your body needs it. My body shuts down if I don't until I have no choice, but to rest. My family does not understand this, but my husband does.

susanep

[Scottietottie]

You have to come up with a new 'normal'. Proritise. Some things are important and some things are really cosmetic and not worth getting exhausted over. Eg housework is not important in the greater scheme of things.

If you have kids encourage them to take up activities that you can watch rather than having to be a participant. You are there for them but not necessarily being active with them.

Make sure you have 'you' time. You only live once. Make a space for something you enjoy doing - and do it. Eg I go singing at least once a week.

If you have a bad day rest up when you can. There are good days too. Try to appreciate them when they are there.

Try not to waste time and energy wondering about what 'may' happen. It may not. Live for the day!

Take care - Scottie 

[McKorky]

I would like to thank everyone for their responses!

[Myshkin]

Don't! If you try to keep pushing through like everything is normal you'll end up way worse. You need to reinvent your life to accommodate you and your needs however that is.

[A66eyroad]

1.)  Find a doctor who makes time to listen and who you can talk to. You may have to try more than one.  And as Joe would tell us, you may also need to bring an advocate with you, especially if you're shy.
2.)  I have found that Plaquenil (I take the generic) is a miracle. It takes a couple of months to kick in and is totally worth the wait. Using it has saved my life -- quite literally.
3.)  Read "The Spoon Theory."  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
4.)  Going along with that, listen to your body and adjust your life accordingly. Our bodies change with Sjogren's even as growing older causes changes (I couldn't do the things at age 30 I could do at age 18, and that wasn't because of Sjogren's...)
5.)  Get enough sleep and eat good food.  Again, listen to your body and avoid things - overprocessed food or alcohol, for example - that make you feel bad.
5.)  Surround yourself with positives -- people, music, books. Ditch negativity.
6.)  Join Sjogrens World and read postings on the forum.