that old fatigue and pain

 

Hi Everyone,

     This is a mini-vent.  I had been feeling pretty darned great this summer.  Even with the hospitalization at the end of May for Atrial Fibrillation and Knee surgery in June, I seemed to bounce back.  I had more energy and was experiencing another remission.  I kept telling myself "Maybe this is it!!!"  Well, I started back to work last week and this is the first week back with students.  I came home yesterday with the type of fatigue that you know is not the simple tiredness you get at the end of a long work day.  I promptly fell asleep on my husband while he was talking to me.  When I woke up, I felt foggy-headed and malaisy.  As the evening  wore on I became more fatigued and then the joint pain kicked in-hands, feet, hips.  With that came the profound sense of heaviness throughout my body.  To make a long story short, I was angry.  My husband tried to reason with me, but I was unreasonable.  I had had two months of bliss and was caught off guard...again.  Every time this happens, I get let down by my body.  And it frustrates me.  It really shows me how much work stress acts to trigger a flare...not always....but something about this week has brought it on.  Thankfully, I can up the Prednisone for a few days, which I know will help.  But I get so disappointed in myself for having to be dependent on these medications to keep my body in balance.  I felt icky today, but chose to go to work and now I am paying the price.  Sometimes I just wish this disease would disappear for good!!!

Thanks for hearing me out.

Love, Laura

Laura:

(((hugs))) I'm sorry that this has hit you again. It's just so unfair I know I feel for you and the rest that go through this profound ups and downs. I seem to never come out of a flare, I'm miserable 24/7 and then when I get bad I just feel worse than I did. I have to say I haven't had a good day since March 2005.

So, for me I don't go thru the getting upset like you do. You get yourself feeling good and then stress and you flare up, and then you get mad, frustrated, and hurt I"m sure. Disappointment is there also because it feels like our bodies just can't do it's job.

I hear ya Laura, when I first started to realize I may have lupus I worked a high stress job, and I made it a point to do things to help me relax. Are you able to go and get massages? Do you know how to do biofeedback and the deep breathing to take you away to a favorite place? Is there an activity that really relaxes you? I would suggest you find something that does this and try using it while you work thru the school year.

I'm not sure how you do it, I honestly don't know how I managed to work until August 2001. I've been sick with lupus since March of 1987. I sometimes think it's our sheer stubbornness not to give in to this disease, it takes and takes from us and our families all the time.

I just wish it would go away or they would find a cure for this stupid disease, but until that happens, all we can do is be here for each other and support each other. Laura my email is listed in my profile if you'd like to contact me I'll be happy to chat with you via email, skype, or on the phone. Maybe if you'd like to try the biofeedback I could be of some help. It's just an offer and I won't be offended if you do or don't contact me.

Just know that I'll send you all the prayers and support that I can towards you. I'm kinda low on energy myself but I'll send any extra that I can. I hope the prednisone helps and with it being a long weekend hopefully you'll be able to get plenty of rest.

Take care and let us know how you are doing.

Hugs,
Barbara