Newly Diagnosed

[AnneNeville]

Checking in after 8 days on prednisone/paquenil.

OMG. Is this what "normal" feels like? I had no idea that I had been feeling so bad. Though I am still tired mid-afternoon, much of the rest of the day I feel . . . I can't quite say . . . physically light?

I feel like I have enough energy to do things. Last night, I cleaned half my apartment. The crippling anxiety that I've been battling for years has subsided (I'm actively treating that, too, but then I was treating it for two years before the Sjogren's diagnosis and making little progress). I sat through a major doctor's appointment yesterday feeling neutral--no heart pounding, no panic.

I had no idea how sick I was.

[Rabbit63]

Hello,  I am newly diagnosed also.  I also have multiple cranial nerves being affected and have diplopia (double vision).  You might want to ask about PT for convergence insufficiency.  It is physical therapy that helps your eyes work together better to improve the double vision.  I also have prisms in my glasses.

I should also mentiom that I had terrible anxiety shopping in grocery stores and driving and it had to do with my vision.  If you google convergence insufficiency and anxiety you will find a number of articles.  My physical therapist said it was quite common.  The more tired and stressed you are the worse it gets.

[AnneNeville]

Thank you, Rabbit63. I will look into exercises.

The anxiety is something that I've struggled with for over 15 years, long before the double vision started.

[AnneNeville]

Having my first really fatigued day since starting the Prednisone. Any suggestions on how to overcome it?

I ate, took an ibuprofen, and napped, but it wasn't enough.

I have felt so much better, it's frustrating to be exhausted again. For the first time in ages I have been feeling positive impulses to do things.

Not today.  I want to crawl into bed and curl up with my cat.

Maybe I should?

[AnneNeville]

Ugh ugh ugh, I feel so frustrated and alone right now. Beginning week three of treatment, but the last few days I've felt really exhausted and yucky for the first time since beginning the medication. It may just be a stomach bug, but I feel discouraged.

Please tell me it gets better.

[Carolina]

Ok, here goes.  It gets better, it gets worse, it stays the same. and then it changes again.

We have a chronic on-going condition.  Many medications and interventions can make our lives better, but we will never be normal.

We will never take for granted what others do...days without fatigue, nights without pain or gluey mucus or many trips to the bathroom.

It takes a long time to accept the ups and downs.  I know because I've been there, as have so many of us.,

Each regression into fatigue, pain and depression seems a shock and surprise.  This cannot be!  What have I done wrong.

Our Immune Systems are disordered.  They are extremely complex.  And so when something, however small, changes, we may experience negative results.

They key is to keep breathing, to think positively, to practice meditation.  And to trust that you will feel better again, in all probability.

Read How to Be Sick, by Toni Bernhard.  She is a lawyer who developed a chronic condition and had to give up her teaching.  She has applied principles she learned in her Buddhist training.  They are simple and beautiful.

There are so many feelings we have about our Immune Disorders:  anger, resentment, guilt, sorrow.  The list is endless.

Anne, it will get better.  But your way of managing your Immune Disorder includes a great deal of gentleness and kindness to yourself.

Hugs,  Elaine

[irish]

You are tired because your body is getting exhausted from being reved up. As you taper your body will start to get back in sync., Even though you are on high dose prednisone and are highly energized you can only burn the candle at both ends so long before you poop out. You can be getting a bug also as higher risk for infections on the prednisone. Even a cold can be picked up easier. Rest and watch for illness symptoms such as chills, fever, aches, headache, etc. Good luck. Irish

[AnneNeville]

Thanks. I'm trying to keep cool . . . I think the good news of finally knowing what is wrong with me (because I've not been very well for years) was so elating that feeling bad again has been rough.

I've had (sorry for the TMI) diarrhea since Monday night and nothing is helping . . . its probably a stomach bug, but it isn't clear . . . hubby had it, but it was over in 24 hours. Not for me.

I have a lot of hard questions to consider. One is how to manage my personal and professional life. I've been only able to work part time for the last five years, which is hard for someone my age (37). I should be building a new career, and instead I'm battling an ever changing slate of medical problems, each one of which is minor but which overall really restrict my life.

I feel bad for my husband.

[Carolina]

Dear Anne,  You feel sorry for your husband because you feel guilty because you aren't 'on schedule' with your plans for your life.

This is life.  This is your life and it isn't what you planned.  We will grieve the loss of our plans, our dreams.  But so many things can change in our lives.  Your husband could be the one with major changes in his hopes and dreams.

How would you react to that?  This is why caring and gentleness towards ourselves and others is so important.

One point:  My own husband had a very hard time accepting my 'conditions', probably because he has a strong medical background.  Often medical people have the hardest time with their own family medical issues!

Now he is gentle with me, and caring and helpful.  And yet he will NEVER understand what I go through.
That is why I am here on this forum, for understanding and support.

I don't know how your husband will react over time.  It is one thing to deal with an 'illness' or an 'accident', is quite another to deal with a chronic condition.

In all probability you have been coping and compensating for your health issues for a long time, which is very tiring and cannot be kept up in the long run.   Now you can stop, take breaths, and find  your natural flow.  Knowing that it may change from day to day.

I wish I could say that your husband will rise to the occasion.  I cannot.  But it is up to you to show him to way, as best you can.

This is bringing me tears, Anne, because we always want our family and friends to be there for us.  And yet chronic illness sometimes is more than we or our family and friends can bear or understand.

I am dealing with what you see listed below my name, the hardest of which is my inability to walk without braces, and then only awkwardly and unsteadily.  I was always the one who walked like a model, full of grace and ease.  Self hatred and rejection are so painful. Others are kind and helpful, and I see that as condescending and rejecting!   So I am struggling today with issues of my chronic conditions that in all probability you will never deal with.  But our struggle is the same.

Patience.  Persistence.  Acceptance.   And the greatest of these is acceptance.

Hugs,  Elaine

[AnneNeville]

Elaine, Thank you for your compassionate reply.