I was diagnosed with lupus just over a year ago now: I have been ill for almost 20 months, almost all of it in bed or homebound, in pain, etc. My entire life has changed since being diagnosed with lupus; the amount of activity I am able to take on, what my future will look like... what my days look like...something I'm sure everyone here understands
I have tried three = four treaments now, and none of them have actually given me any progress. I feel the same as when I was diagnosed- but find that my days are better (not my symptoms) because I have gained more skills to cope with the symptoms and the emotional crap of the disease. While Dr's say that some other treatments may bring me more relief- I am unsure as to how much relief will actually come (or maye I've lost hope?)... and doctors also say that, I will never actually retain the functioning that I had before I got sick (so there isn't much 'imprvoement" that i can expect.)
I wanted to ask everyone here- have you actually gotten any better- or do you also find that you have just gotten better at coping/ living with the illness?
I've asked some people I know with lupus and they say that it's more the coping- but sometimes they are better- ...
I’m sorry to hear that. I’ve only been officially diagnosed for a few months. So far I haven’t been able to get my flare under control. I often wonder the same thing. It’s very frustrating to not know what to expect with lupus or what symptoms are actually worth a trip to the doctor. I’m still learning how to cope with the diagnosis and dealing with all these awful medications. I do hope things get better for you soon.
Hi Everyone-- OMG I am blown away by the number of responses to this. THANK YOU SO MUCH. I am glad that you all liked this question... it is honestly something that goes through my mind EVERY SINGLE DAY... I find that no doctor has ever given me a straight forward answer about getting better or my future- only that some treatmenst may or may not work, or may give me slight improvement, and obviously there is "no cure". I really appreciate everyone's responses- it is so wonderful to have such a huge group of people to draw support and experience from. This too has been my experience (that I get better at coping- and in turn, I think, get better- because I feel more in control, and positive...)...
Here is a wonderful quote I found on this topic, from "the Ugly dress" book:
"Despite a big, ugly ulcer on one of my fingers, I spent two hours today working in the yard. I shoveled dirt, spread mulch, and planted shrubs. It's not that I don't have discomfort during these activities- but i've learned to adapt to the pain. The pain is not less than it was in the pass- but now it's just expected. It's not always in the foremost in my mind, and it does not keep me from living my life.... Adapting to pain does not mean I hate it any less. I'm just more familiar with it. I do get frustrated. I do cry. I do get angry. But I am constantly adapting, which lessens the negative feelings. Without even thinking, I use my hands differently in typing, touching, cleaning, bathing. I eat differently, sleep differently, pace myself differently, and choose differently..."
And I also love this one (Not on this topic, but wanted to share with you all!) :
"Lupus is as instructive as a trip to europe- but it is a journey that must be made alone"