View Full Version : How much have lifestyle changes helped you?
04-01-2007, 01:39 PM
Just curious how much effect, if any, lifestyle has on your symptoms.
I guess what I'm asking is, do you feel sick and crummy no matter what you do? Or do you see a direct relation between things you do (or don't do) and how you feel?
If there is a relation, what things have been the most helpful and importantant for you?
04-01-2007, 08:08 PM
Lifestyle changes have not eliminated those periods when I feel sick and crummy (or, in a flare). However, I really believe that the changes have made those periods not as frequent as they once had been. Also, I am able to almost know when I am about to enter into a flare and I immediately make even more changes in an effort to avoid the flare. It does not always work, but I think that I am, at the very least, able to prevent the flare from being a devastating one. However, there are times when, no matter what I do or don't do, what I eat or don't eat, how careful I am....I contract a virus or an infection of some kind and then it all sprials downhill from there. For me, my very worst flares occur after I contract some form of virus or infection. So, I suppose that this could even be attributed to lifestyle changes because my flares are not that bad aside from these instances.
I guess I've said all of that to say....YES, I believe that lifestyle changes have made a difference for me :lol:
Peace and Blessings
04-02-2007, 03:57 AM
Redhead, it's only been about 11 months for me, so I'm not an expert. But I'm learning that some life style changes DO make a difference for me. Some are simple: like getting more sleep; resting when my body tells me to (when I'm able); not overeating; staying out of the sun. Some aren't as simple: avoiding stess or at least handling it in a way that reduces the level of the stress for me; saying "No" to people when I know what they're asking me to do is going to set me back; slowing down at work; asking for help when I need it (I was a BIG do it myself person!)
I work part time now - big, big lifestyle change for me. And, I can work from home when I need to - another big change.
But Saysusie is right - no matter what you do, you're still going to experience ups and downs with this disease. Just about the time I think I understand it all and I'm stable, some new symptom or complication comes along. But, all in all, I think the changes I've made in my lifestyle are helping me manage my illness without 'giving in' to it or giving up. I hope you'll find your balance, Redhead. There defnintely IS life after a diagnosis of lupus. It just takes on a new shape. In a way, the good things in my life are now in sharper focus, and I think I appreciate them now. A day with my granddaugher (a redhead, by the way!) becomes so special. Maybe God can use something like lupus as a way of slowing us down enough to see, here, feel - really experience what's around us - and maybe take some time to get to know Him! (something a little more subtle than lupus would've been OK with me, however :lol: )
04-02-2007, 01:07 PM
hmmm.... i'm still new too, eventhough it been 3 years this past jan. it seems something new pop up every 6 months or so :lol:
well, lets see... i've changed my diet and eating habits a bit, nowhere near how i would like though :roll: . i do mostly organic or all natural - fruits, veggies, seafood, i eat way less meats, especially red (and i LOVE a good steak!), and try to stick to what in season. it can e expensive, but we to to farmers markets too. i also try to juice, which i do not do enough of. every week i say to myself i will do better! i am still investigating different things like is pork ok to eat more than chicken.
i also am starting a food/health diary. i have kept a journal since 14yrs old (it drives dear hubby crazy because they're all in the garage, and i can go back throughout our 15yr relationship and say "no babe, on that day you said such and such..."!) anyway, i've always recorded everything, but now i think i need to have a dedicated journal for this. i've been suspicious of various foods causing flares or reactions of some sort -sweeling, achiness, rashes, etc.- plus my ladybug has what we call food triggered eczema too.
and i've added several supplements - vit d, bcomplex, fish oil, flax seed oil, coq10, various amino acids, MSM. and massage therapy which i've been doing for at least 10 yr, since way before i was diagnose.
i had added yoga and accupunture, before i had my big siezure and major hospitalization. now i have serious moibility issues on the rght side, like i had stroke. it's so much better now though, and i'm getting back to my yoga at home using dvd videos.
im goin to try very seriously to meditate. i just got some books on it and am excited to try it. i start today, once i get off the computer! :lol:
i cant wait to hear what everyone else has to say!!
be well my friends :wink:
Pretti in Pink
04-02-2007, 05:07 PM
Good for you! You sound like you have made some good strides. Does the yoga help with any of the joint pain?
04-02-2007, 09:40 PM
hi pip! thanks, i do try at least, however, i still feel that i should e doin more. yes, yoga helped per dear hubby. i had siezure and fell down big stairs, and now i have short term memory loss and bad aphasia, which is why my words arent always right an dpropery. but he says that i went to class about 3 times a week, and that the yoga where it hot didnt alway work for me. i think the fast warming, then fast cooling of my muscles was not good. i would hurt so bad.
so just regular yoga, and i took it slowly.
hope this helps :)
04-02-2007, 11:28 PM
I am a firm believer (like mnjonette) that God gave me this disease to slow me down (I also would have preferred a more subtle warning). I was living a very high not a care in the world lifestyle that my mom always told me that I needed to slow down and remember my roots...well here I am now with lupus, living very differently : exercising more, watching what I eat (I have cut out my twice a day meat habit) trying to eating very little white foods, no dairy and so forth. I have been doing great but have my downs after a bout of the flu or some kind of infection and usually I have swelling and pain for a few weeks after. I just had some labs done and I have cut back on my fish oil intake and sure enough my kidneys aren't doing as well as when I was taking them religously and even the doctor told me to get back on them. I wear a full wetsuit when in the sun as I do water aerobics which has totally changed my post-prednisone body into something much nicer than a few months ago (I still take 2.5mg every other day) but am wondering if all the swelling in my fingers is from the sun???I live in Saudi Arabia and our gym pool is on the 4th floor in the hot sun even at 8am. Any thoughts on that? I have never had rashes and went on a beach vacation (in a full wet suit) and had no symptoms for the time I was there even though I spent 6 hours a day in the pool and beach with my kids. I was a prednisone puffball at the time so you can imagine what I looked like. Anyway, life goes on and you do what is best for you. I went to an immunologist to get further insight but I think he thought I was nuts. I believe that they are making some headway with lupus research and that soon we may know what causes us to have this strange disease and that gives me hope for our future generations.....(I believe it is from stress....)I am rambling now.
I wish everyone the very best.