Hi Everyone

General
1

HI Everyone

So i"m really new to this whole lupus thing and it's quite scary. Mostly because everything tells me my life is going to be very different and I will have to give up alot of what my life used to be.. avoiding stress, living a quieter life, etc..

What exactly has your experience been as far as having to adjust your life to accomodate lupus?

How do you manage to stay active or do things when you are in pain or tired?

I'm in school (I'm 23) and my doctors told me that I should take time off to get better. I was diagnosed maybe a week and a half ago, based on the fact that they found the lupus because of this 'flare' that I am having which isn't appearing to go away. How long do these things last? Do you think I will be able to go to school?

How do you manage with the brain thing? My brain doesn't work at all like it normally does.

Thank you everyone.

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Hi there!

Like you, I was also recently diagnosed with Lupus; back in June. I'm also 21 years old and about to head off to college, tomorrow. For the first few weeks, after being hospitalized for a month, it's a bit rough at first. Your energy won't be the same and you get exhausted more often. For me, I was very down for awhile. I got depressed, I cried but eventually I told myself that being mopey about it won't solve anything, so everyday, I did some sort of yoga or stretching to get my body moving.

It's basically baby-steps in trying to figure out what your limits are and what you can and cannot handle. My mom would take me out to go food shopping, and around an hour I would have to tell her I dont feel good and it's time to go home. But I always tried and get as much walking/exercise in as much as possible and now I'm able to go out for a whole day.

A lot of my family told me I should take off a semester and take time to recover. At first I was really thinking about it, since I was so sick and tired all the time. But as the days and weeks came and went, I was able to build my stamina up again and I'm able to go to school. The biggest thing is, if you tell yourself you cant do it, then it starts to get to you. Don't let the disease get to you, take control of it and don't let it hold you back.

Before the whole lupus, I played softball, I was involved with martial arts and teaching it at school.. So I was a very active person. But now with the lupus; i'm not really sure how that's going to work, but as long as you know what your body limit is, you should be okay. Just remember to take your time and don't rush into anything.

For school wise, if you do plan to go back to school; You should sign up for disability. So if you get sick or need to miss class for a doctors appointment etc... Your professors won't hold it against you (hopefully), and they'll know how to accommodate with your needs.

For the flare, i'm not entirely sure... Since it's been at least 2 months since I last experienced anything. From what I heard from other members, maybe about a week?

I hope that helps! And good luck with everything!

-Julie

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Hello Lillian,

It's funny Julie answering your message "Ibie Monstah" because besides help from member's...Julie's been going through alot herself and would be a great friend to have besides.

Lupus is scary if you aloow it to be...you have to learn the symptoms daily and on summer issues fight your hardest....your life will be different as i've read your profile Lillian and you've neen through alot.

Things you can cope with any longer try not to force yourself to do them...take each day slower it's all about pacing your daily life and if you do anything learn to take a break in between and when your not well rest and a quieter life does help as i've found that plus you get so used to it and stress plus depression is bad for Lupus because depression coming on anyone naturally Lupus can cause it anyway and if you gets depressed or stressed lupus thrieve off it and your symptoms will feel worse than they are...stupid as it sounds a good cry releases so much pressure if you feel that way enclined.

Lillian i've ome to using a rollator or crtuches now...according to how my days and legs want to react..i move about slowly and do what i can but i do take breaks in between and i'm niot a person if i'm not well for resting in bed, i'd rather sleep in the chair and do it that way, it's hiow each and everyone of us copes and how rest suites our bodies.

Flare's can work from a few days to a couple of weeks..if they stretch to 6wks or more then it's classed as a chronic then you need furthur help and i would take the suggestion of giving yourself a break from school as you could be over doing issues.

Brain fog as we call it can happen anytime and then you can't function to the best of your ability..but when the day does come and your minds fully with it...sometimes your body does'nt want to connect with your brain and other times it does...when this happens you'll find if you can do things or not.

Hugs & kisses to you Terri xxx

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Lillian,
Ive read everyones responses and theyre so spot on. I will keep mine short and sweet. Im 24 and recently diagnosed (about a month ago) although Ive been dealing with lupus my whole life. I am actually still in a flare thats lasted almost 2 months now but am back on prednisone and feeling well. Here are some tips I can give you:

1. You do not have to feel guilty when you just need to take a break and rest. I often feel like theres always something else I should be doing. Take the time you need!

2. When you feel good, dont over do it. I tend to feel good (especially on prednisone) and think im healed and back to normal. When you do this youre just prolonging the flare and will feel worse longer. Take time to heal and take it day by day, you may feel great tomorrow.

3. Stay active but within reason. I used to hike alot before this recent flare and realized I cant keep up. Instead I take a leasurely walk around the block after dinner or think about all I did in one day at work etc and realize, thats enough!

4. Dont get caught in the shoulds. I still find myself inside a mental block of "you took a pain med so you should feel better" or "you didnt do anything today, you should feel much better!" or "I should be able to hike up this hill like everyone else" or "I should be able to get through even a half day at work, why cant I" The truth is, is that we have lupus and we shouldnt HAVE to feel any of these things. Do what you can, and there will be other days when you can do more.

5. "It is possible to be happy at all times if it is a priority." There will be times when you are sad and you will cry. Let the stress out. Its always better that way. Get yourself a support network like us, family, friends, people you work with, and make it a priority to better your life no matter what. Through the last month and my diagnosis ive learned to appreciate what I have alot more, and ive become more, rather than less excited for the future! There are great people and comments here to help you.

Guess that wasnt so short!!! :) Hope these replies help you!


Sara