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What have you done "because" of lupus?

713 views 15 replies 13 participants last post by  nicky00 
#1 ·
Hi everyone,

Reading the boards recently no-one can deny that a lot of people are going through a pretty tough time for the moment.

On top of that, for many here, it is the depths of winter (and what a winter) and it all gets a bit much at times.

However, I know, from being around here a while, that there are a lot of heartwarming and positive stories out there too.

It is easy to dwell on what lupus has "taken" from us. I don't usually think that way as life in general can take pretty much willy nilly, lupus or no lupus. So, here I'd like here to think about what it has actually "given" to some of us. I know that people have been able to "do" thing that they couldn't have done had they not had to change/adapt life.

I'd like us to share what those things are here in this thread.

For me, there isn't yet anything concrete, just lots of little things. I finally have time for my friends, I have time to look at the world and its beauty rather than dwell on its darkness, I have time for my kids, for my photos...and, I am really truly going to get down to some serious writing - a long time ambition, always put off for want of time.

thanks for spreading some warmth and positive vibes,
hugs to all :grouphug2:
Katharine
 
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#2 ·
What a good thread to start Katherine! :wink2:

I will have go away and have a good think before I can add something interesting to this thread 'brain fog'!

Hugs!
 
#3 ·
Katherine, I can only think in the abstract at the moment. I would say that Lupus has made me find out a lot about myself, and perhaps understand others better too.
It does screw up lots of things but when we accept and adapt it can be got through. I have met some really understanding and empathetic people in the oddest places as a result of being ill.
x Lola
 
#4 ·
I was in a job I didn't enjoy very much when I went off sick and was diagnosed (just before my 21st birthday). I got medically retired from that job soon after.
Whilst I was unable to work because of the lupus I did an Open College of Arts course, and City and Guilds course, both by home study. Once I started on steroids and began to feel well again I did what I'd wanted to do for years and started up my own textiles business. I was able to do something I loved and work from home :)
 
#5 ·
Oh what a good thread...

I think it makes you appriciate little things that at one time i didnt even notice...i have found out i am a much stronger person mentally than i would have ever imagined...

And through this board have made some wonderful friends..:)
 
#6 ·
Because of Lupus I: Have met some wonderful people on the internet and at Drs. offices, which gave me the courage to write letters to politicians for research funding, leave literature and phamplets about Lupus in public places like museum and library message boards, and, become involved with various fund raising activities. Before Lupus I was very painfully shy; I still am, but this disease has forced me in many ways to overcome that:). Because of Lupus I am not the perfectionist I once was, I demand a little less "perfection" from myself and others and enjoy life more.........Guess it hasn't been all bad;)
 
#7 ·
Good grief, I am a silly whatsit... brain dead I'd say...

Of course MY "opportunity" has been to stop working as an in-company trainer (which was mentally exhausting and involved a LOT of driving) and to actually take the risk at becoming a translator more full time (not really full time as I couldn't manage that). I would never have dared take that leap if I hadn't actually been forced to completely rethink life. Imagine forgetting a thing like that :rotfl:

Katharine
 
#10 ·
It has gotten me to slow down and enjoy the little and big things in life a lot more than I used to.... Taken away perfectionism. I no longer think so much about how things "should" be but work with how they are and that has been a big benefit to me. There are a ton of lessons and gifts I've had from my life with lupus but the biggest one has been:

I have been able to spend a lot more time & quality time with my daughter since I had to quit work and that is the most precious gift lupus has given me.

Of course, I'd rather have reached this point via about any other way, but that's not the way it is! Love this thread Katharine - so much of life is about point of view and a positive attitude and lupus makes it so easy to focus on the negative far too much. Thank you for starting it!
 
#11 ·
I found this site due to Lupus!

I have met (on site), so many lovely kind and caring people that I would never had known if i did not have Lupus!
 
#12 ·
new life

after working 45 hours a week, and not having much time to live. I have found out how to laugh again, how to smile at people and really mean it,
to take the time to talk to strangers and find out how I can make their live a bit better, the old saying "stop and smell the roses" really works,
watch the leaves dancing in the wind, learn about myself and see where I can make changes,

Hear what people are saying instead of just listening and wishing they would hurry about and go away.live on a budget and understand how other people do it

and most of all make friends here for life, and see the whole world through their eyes and learn about the world and all around me , and do what little I can to to make it a bit better
 
#13 ·
Great idea!!

I had to leave full time EFL teaching so was able to devote more time to my love of learning/ maintaining my level of French and Spanish:)
I could finally find time to start an MA...which has led to to a PhD for which I have received an academic excellence shcolarship.;)
I found this site and made some lovely supportive friends:rolleyes:
I learnt to appreciate the little things that get passed by-a lovely sunset, a coffee with friends, a gossipy email :)
I lost an unsupportive boyf and got a hamster as a male companion!!!-so much easier than human males!!!!:lol:
Rachel
 
#14 ·
grateful

hi kathrine
i think having lupus has made me more understanding other people especially sick people.i am not as bitchy aswell.getting lupus showed me what a fab husband i have who looks after me so much so instead of whinging i try to be grateful,i always think there is others less fortunute than me all i need now is a little baby and life would be complete
helen
 
#15 ·
Hi Katharine

what a lovely thread, thanks for posting! it makes a nice change to look at lupus from a more positive aspect. It can be quite difficult sometimes!

I'm afraid my reply isn't very original as it's the same as most peoples on here in that I have always had quality time with my daughters. lupus has made me a stay at home mum which I will always be grateful for.

It has made me a stronger, more caring person. I always have time for my friends and family ( well, within reason, I'm only human after all :hehe: ). I appreciate the little things in life and I most definitely don't take anything for granted!!


Also I am currently struggling along at college, which is only one day a week but I have a lot of coursework & research to do at home too, which I find hard. however I am thoroughly enjoying it & the main reason I keep going is that I don't want my life to be just about my disease. I want to be something else ( if that makes sense? ) so I have lupus to thank otherwise I would give up because sometimes I feel too old to be studying :lol:

right enough rambling :rolleyes:
thanks again katharine :)
love karen x
 
#16 ·
Brilliant thread Katherine!!

Ok ....

I dont fear or worry about things that others worry about.

I've learnt to walk instead of running. Walking has given me so much back.
Im not so sure I would have kept that up if Id been fitter and healthier in quite the same way!.

Joining this site has bought me knowledge and therefore confidence within my disease:) Big thankyou.

Joining this site has also taught me how things are so relative.

I worry less what people think and their opinions about lupus who havnt got it.

Ok Im stuggling to think of more things now:p
 
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