7 replies to this topic

[ittybittysmitty]

I am SO disappointed...i had plans to go to a craft sale with friends I rarely see and suddenly the zaps came on full throttle with a headache..i also feel weak while walking.

I have cervical stenosis so possible it's spine related.

So my first question is whether any of you experience good days and bad days and do your symptoms come on without warning even on a good day?

Secondly, how do you cope with the unpredictability?

[TryinginFL]

IBS,

 

Yes, I'm sorry to say that you will experience good and bad days for some time. The good days will eventually outnumber the bad ones, however, but there is no way to know when the bad ones will come.

 

Just take this a day at a time -- an hour at a time-- there is no time line here and we are all different.  Believe me, It WILL get better!  We have all experienced the good and bad days...

 

I know how difficult this is for you - especially when you had plans! 

 

Please remember to be kind to yourself!  There is no way to rush things.

 

Love and hugs,

Liz
.

[ittybittysmitty]

Thanks Liz,

Sometimes it's hard to accept, especially when it's so unpredictable, but i am thankful for a good day yesterday

 

We have each other and it's good to know this forum creates common ground we all can share with each other.

 

What are you up to today?

[TryinginFL]

To be honest, I have spent the majority of my day on this forum!

 

Don't get me wrong  -  I enjoy trying to help!  I know how much I appreciated every reply and every word I received from the wonderful people here!  I don't know what I would have done without them!  This has been one of the hardest things I have ever done in my life and I feel that it is almost behind me at this point!   It has been one hell of a year...

 

I will be going to church in a couple of hours and always keep everyone here in my prayers.  I am so happy for all of you here and you all have become wonderful cyber friends - I wish I could meet you all!

 

Be well, my friend

 

Liz

 

PS  I plan to stay on the forum regardless!

[gail]

IBS,

Liz started a post on why we started and why we went off shitbalta.
Please join, we tend to forget the length of time others stopped and ask over and over the question.

As for the bad days, I feel it coming slowly and boom.

Unpredictable, and plans go sour. Many times I had to postpone things.

You think that you are out of the woods one day only to find yoursef back in the following day.

Making plans is touchy as you do not know how you will feel.

Wish I knew since when you are off the shit, and with the new topic that Liz has started, it will be easier for us to go back to it and get the story. I also find that this makes us feel closer to one another.

[TryinginFL]

Gail,

 

Wonderful post - and you are right - it does make us all feel closer!   A happy feeling!!

[Clara]

Hey all! Yep, good days and bad days for me also! Having trouble sleeping since I stopped smoking in August and that greatly adds to the fatigue, anxiety, inability to think, concentration, You name it! One year off the crap and still struggling, BUT, I am a million times better than I was this time last year and am so so so grateful for that! Grateful for a wonderful, supportive husband, and all of you! Love, hugs and prayers to all!

[ittybittysmitty]

Clara, 

 

Congratulations on quitting  ...did you go cold turkey? Being over the one year mark is something to celebrate, and a great hubby to boot..Yay for you!

 

...andheart,

 

Yes, i know what you mean...dealing with withdrawal and fibro feels like a millstone around my neck..But i am very thankful that today I'm in much less pain!! I am also thankful that i am able to have a significant amount of time off now to decompress from the stress of caregiving....