Wow! It's when I read posts like this that I am very encouraged. I don't like hearing that the rest of you are suffering as well, but I don't feel as alone when I read of your experiences. So, thank-you everyone for sharing. Exercise, or the cut back of, has been a huge burden for me. I seem to hear a lot of how people with lupus used to be really big into exercise, and now have to cut back. It's so sad really. When my heart everyday is telling me of how much it wants to be outside in the sun going for a long sweaty run, or a good hr long rollerblade, or go running on a hiking trail and I must deny it. I feel alone a lot of the time when my friends/family can exercise till their hearts content and till they feel exhausted and only feel it for a night. I am so happy for them as they're experiencing something that I so long to, but can't in the way that I want...maybe in time. Right now I go on a couple-four walks a week of maybe 20min long. Sometimes that's too much and wipes me out for the rest of the day with fatigue. I am hoping that the new med for me (Imuran) will help up my energy level heaps. My Rheumy said that it should. We'll see. I'm nervous about
getting back to the gym. So, some of you do weights, eh? I thought that that wasn't good for lupus sufferers? Or is that just what some say, and some advise otherwise?
The best thing that I find helps me with the cut back of exercise, is to enjoy each moment that I do get to (if only for a short bit) to the fullest of my ability. I smile hugely at people, and thus receive a big one back, and take in the flowers, and the dogs playing (if there are any about), and just soak in the moment. It's the only way that I can endeavor to be content with just walking, and not running and hiking and doing aerobics, etc like I'd rather be doing. Just trying to maintain a positive/thankful attitude for what I have, keeps me from being miserable.
I too have been trying to find out what level of exercise I can do, and I haven't quite mastered that one yet. I find it changes quite often, which is super frustrating..But I've realized that even though I might feel GREAT on a walk, I could pay for it later, so best not to make myself feel completely tired while on the walk, or I'll be super wiped.
Anyways, that's my two bits:) Thanks again everyone for sharing your stories.