normal life?

[jas1223]

As this is all new to me and overwhelming i wonder does one ever get back somewhat of a normal life
because me being sick seems to be with me 24/7 unrelenting it has swollowed what was my life

i feel like all i do is complain how sick i am

is there still some good to look forward to?


feeling lost

[Chickpea]

Hi Jas

I'm sorry to hear that you're feeling so overwhelmed by everything at the moment.  There are times when we all feel lost and alone, and that's why we come here and share our thoughts with each other, with people who can really understand.

We've all felt the way you do today and I promise you that there is light at the end of the tunnel.  SjS affects us all in different ways:  some people have flares and then have weeks/months/years when their lives are back to 'normal';  other people have low level symptoms almost all the time;  and a few, very few, people have systemic symptoms which need aggressive treatment.

We also come here and share the good times.  And there are lots of those too!  And jokes and silly times.  Join us in the chat room and it's like being out on a hen night!

But you need a place to vent and complain.  As our dear Scottie says, Sjogrens is interminable but not terminal.  Sometimes we're just so fed up we need to complain and who better than Sjoggie friends who understand.  Have you got friends and family who will listen sympathetically?  Do they understand how you feel about the huge changes in your life?  We have lots of discussions about how to help them connect with what we're going through.

Tell us more about your journey here, how your symptoms have developed, and what your daily life is like now.  Maybe we can help with practical solutions to problems, ideas for treatment and support.

Thinking of you - Chickpea

[jonnell]

Jason,  My daughter Jenna is 4 and I keep asking the same question,  will she ever live a normal life?  We try the best we can but she is so tired of being sick and being pricked with needles I am kind of glad if she got it she got it young because it is part of her life she has lived with it and it is all she knows.  There are so many wonderful people on this site and they have given me strength I didnt know I had.   Hope you feel better.    Hugs and Kissess  Jonnell and Jenna

[harrigan]

I ageree with you Jonnell - having an AI disease so young brings with it a stoicism and perspective on life that is truly a blessing and bonus.  I've just been helping Katharine (16) have a 'dress rehearsal' for the school prom on Wednesday.  I wonder where all the years have gone but I know that in the midst of all the anxiety and pain, a gorgeous, compassionate and patient young woman is emerging!  XX Ailsa

[jonnell]

Your have a 16 year old daughter name Katherine to my daughter spells her name Kathryn and was 16 in March she is my oldest.  They grow up so quick.  I also have a 13 year old son and Jenna.  My son lives with his dad.

[kcoffiner]

Hi Jas" I've been reading your posts and the quickness of your dryness reminds me of my own. I think it comes as a tremendous shock to us and takes a lot of time for us to mentally comprehend what is happening to our bodies. However, that doesn't mean we can't eventually find a happy medium. I m not saying our lives will be the same (trust me I know how hard that is to swallow) but we can again learn to enjoy things. For instance last week we had a beautiful day in New York. I went to the beach, went into the city, and had a great night out with friends. The dryness was there but I still did those activities and enjoyed them. I am nearly two years into this thing and while I have bad days (why me days) I have more days where I overcome my Sjogrens and do what I want to. I wish you luck and you know that we are all there routing for you.

K

[Redetha]

 What is Normal anyway?  It is a different concept for all of us.   Just hang in there and remember there are a lot of us out here that are "Not Normal"..espcially me.  HA !! I am trying to look at this as another adventure in life...... especially as I am wanting to scream....Energy where are you?

[ohiolady]

I'm feeling much more normal these days.  I had sudden onset dryness of my mouth and eyes and it was severe. Also, very sick the first 1 1/2 years.  Gradually, I've started feeling better.  I still have dryness issues and stomach issues but I'm feeling like I'm living a much more normal life.  Some of it is plain old acceptance of the disease mixed with improvement.  The disease just blind sights you and this is especially true when it hits you hard and suddenly.  Rest, rest, rest and don't give up the idea of feeling better.

Anna