Dont I feel stupid

[LittleBlue]

Lol few days after I last posted an update on my condition, about improving, I went into a flare. Was whinging like a baby for six days, in agony, feeling ghastly and exhausted.    At the end of it I felt fine and was out running around a field with my dogs! I just don't get it, and nor does my family. It's a weird one is Sjogrens. Today I have tackled the shed that needed sorting, and last night trimmed the hedges. I have loads of energy and feel better for moving around.  It's unreal how I can change without warning like that.  I have now learnt to do what I can, when I can, and no more. I dont want to, as Im not usually a pessimist, but I do wonder whats around the corner. It's like having the sword of Damocles above our heads don't you think?

[Suze]

I find it hard to know when I should rest and accept the fatigue and wait until I'm feeling better, and when I should try to get up and out and overcome it for that moment. Although often I have no choice and just can't get up.

[Blue Hydrangea]

I've learned to accept the fatigue and rest when I need to in the hopes of avoiding flares.  I think this is hardest on the people around us because how does someone understand that I can feel fine thiis morning and then by the afternoon I am totally exhausted and can't do anything.  Plus I never look like something is wrong with me so I think that makes it even harder for others to really comprehend what this is like. 

I'm one of those who still believes this is only temporary and one day I'm going to be back to my old self.  I'm working on accepting it but I still go back and forth. 

[LittleBlue]

litliwlowa I can't see any rhyme or reason to any of it. I think cold and stress aggravate my raynauds, but for the rest of it, only the Lord knows. I felt a fool. There I am sprouting off to my family and on here, that Im better, Im cured, hallelujah....... then it makes me look like a prized idiot.  I must admit though, I think I would be a lot worst off without the plaquenil and nifedipine.

Suze if you feel tired just trust your body and rest. My problem I find is like what litliwlowa mentioned - wearing myself out making up for 'ug days' (good word that).

Blue just coming out of that stage, I know what you mean. I did get a bit angry with it all. Never had anything like this happen to me prior, its  like a bereavement. It's like you are saying bye to bits of yourself. It makes it difficult too when others haven't a clue to whats going on in your body underneath. Eventually I had bad days when I looked ghastly and was in so much pain  my family couldn't ignore it. I got to the stage that I was hurting that bad I didn't give a hoot, and I wasn't pushing myself to do anything I wasn't up to. Others can never truly understand what they don't experience I guess. In my experience illness in others makes people uncomfortable and want to run a mile.

[Cassi307]

Littleblue
When you get those energetic moments please come over and help with my yard!

I find myself wondering about my new normal where I can't accomplish what I used to do.

I am one to talk but it helps to learn to pace yourself so you don't push yourself into a bad symptom day.

[finallyadx]

I hear you, I do.  Some days I have lots of energy and can do the things I need to and other days I wake up, feel horrible and cannot do anything!  It is so frustrating for me and for my three kiddos...

I try to take advantage of the good days as it sounds like you do and do what I can and focus on those days.  We all deserve a good cry and a good rest - so do not feel stupid or bad about being sad or frustrated or just plain old tired of being sick and tired...you are not in this alone!

Hang in there.

Sending positive thoughts and prayers your way.