It's incredible how much frustration plays into the life of a Lupus patient. I'm sure people may feel sorry for you, or wish that you were there at that party, but what they rarely understand is how much I wish I was at that party. I'm going through a pretty bad flare right now which makes leaving the house hard right now.
Laying around the house watching TV usually sounds great when you're crazy busy at work, but to be honest, it gets old really fast. I'm beginning to wonder if the rest of my life is going to be spent on my living room couch. I have great friends and family that support me and run this incredible foundation with me. I so wish that I could be a better contributor to their work. I would love to be digging in and doing the hard work, but that never really seems to even be an option.
Being extremely frustrated also comes across as snippy or rude to the few people who really are trying to be kind to you. I can hear my voice getting short with people and cringing at my lack of ability to stay calm and cool. I hurt, I'm tired, and I can barely move without pain radiating through my body. All of that makes being a good friend or family member harder than you can ever imagine.
I so wish I could babysit my niece and take her to the zoo and carry her through all the exhibits. I've yet to ever be physically capable of doing this and it makes me both sad and frustrated at the same time. I want to pitch in and take her for the night so her mom can get some sleep, but I can't do that either. I know that I should stop dwelling on the things I can't do and do the things that I can, but when your options are limited like mine are, that gets harder and harder.
I'm going to try and buck up and be a good sport, but I have no doubt that all you lupies out there no exactly what I'm talking about. Hang in there my friends and I will do the same!
Thursday, April 3, 2008
Frustration
Subscribe to:
Post Comments (Atom)
4 comments:
I hear you on how draining the lupus can be... Living with it for over 6 yrs with this illness takes away so much of my energy...I've had to take it one minute at a time...
Chronic Chick Talk
Molly - I have suffered for 9 years and know exactly how you feel dear. In fact I had symptoms for much longer (even losing a kidney) but they never put it all together until then.
Lately I have had what I would call a remission - maybe the meds are finally right - or maybe I am just being lucky for once. Either way although I am still tired and sore - I am able to work again and do hobbies.
What meds are you taking? I am on methotrexate, prednisone, plaquenil, and kepra plus meds for other problems. Maybe you can ask your doctors about these.
I will be praying for you - debby
Thank you chronic chick for your support. One minute at a time sounds like a good plan right now. I know that there are people out there who have it much harder than I do, but on the bad days that's awfully hard to remember. I always try to remind myself how lucky I am to have such a great group of friends and family supporting me. I really hope that you have the same. Hope you are having a pain free day!
Debby,
Thanks so much for leaving a comment on my blog. I'm so pleased to hear that you have made it to a state of remission.
I've been dreaming of reaching that state myself. I've been lucky to not have kidney involvement yet,though they have already determined that I'm prone to that.
I definitely understand the tired and sore part, what kind of hobbies do you do? Do you live in a warm climate?
I'm on so many meds,it's hard to name all of them. The reason I am struggling so much right nowis that I finally tapered off my prednisone. It took me nine months, but I finally got away from it, but I have to pay a little bit of a price for it with my current flare.
I think things will be looking up soon. I'm grateful for your prayers and will be keeping you in mine as well.
Take care,
Molly
Post a Comment