[iris.phillips1]

hi there guy's:rotfl:
i thought id come on and say hi and sorry ive not been around the past 6 months have been really hard and ive been very distant ive not wanted to talk to lot of people all i wanted is my own company i know thats not the answer but this lupus lark is really hard to deal with, even though ive had it 4 years now i think you dont really come to terms with things:sad:


people just think im used to it but what they really dont know is im hurting and very down in the dumps im 25 and would just like my life back
thanks for listening all
big hugs genette xxxxxxxxx:rotfl:

 

[Karen Elizabeth]

Hi genette,
I am new to this site and to Lupus. From what I've been reading, it doesn't matter how long you've had Lupus and other problems, we all still go through ups and downs. I think its hard because everyone else around me seems to be moving on with family or careers or whatever, and my plans for the future are so uncertain?
I am finding it really helps to be in touch with so many others going through the same, if not worse, than I am. Hope it helps you too...
Karen x

 

[LolaLola]

Hi Genette, I remember you being on here before. Sorry you have felt so bad, but many of us need a break sometimes from the intensity of lupus.
I fully agree with you, it is hard at 25, my Lupus was only starting then. I was still pretty good.
My Daughter has not been so fortunate-diagnosed at 16.
x Lola

 

[Lily]

((((((((((((Genette)))))))))))))) :hugbetter: I'm glad you decided to post. I fully understand what you are talking about but it must be even harder to be so young with the disease. I think we all get fed up with things and the fact that no-one can really understand we aren't 'doing fine' on most days and other days we are doing really badly. There are days I just want to stomp my feet and scream at what we have to endure, and the fact that no-one unless they go through it even has an inkling of what it's like.

It helps to come here and talk and get some understanding nods and those all important hugs, so don't be a stranger. :hug:

love
Lily

 

[Maia]

Welcome back & I think it's a positive sign that you're reaching out to others that can understand just how things can be when you're living with lupus... I hope we are able to help you in some way even if just some understanding words and many big hugs to you!

(((((Genette)))))

Don't be afraid to talk to your doctor about how you're feeling as well, sometimes there is medical or talk therapy that can help greatly. I had a few sessions of Cognitive Behavioral Therapy (with a therapist who specialized in patients with chronic medical illness/pain) around the time I had to leave work due to lupus getting too bad to continue; and found her perspective and training about a new way to look/think about things very helpful.

 

[epies_ili]

Hi,genette. i'm new here n i'm new people with this lupus. I just 22 n yes,it takes times for me to adapt with this illness. I try my best to overcome my pain n my mood always turn to be so depressed if I can't control myself. Everyday I woke up early in the morning I must motivated myself that everything gonna be alrite if I look in a positive way. Life must go on n I must accept lupus as my part of life. I know I still new with this disease n not the right person to give u any advices but u know what make me strong till today is...I have u all guys! U can manage ur life so do I! a big warm hug to u!

 

[Joandublin]

Hi Genette

Its lovely to hear from you. I was just thinking about you recently and wondering how you were doing. Im sorry you have been through such a down time :hugbetter: I hope you get a little lift from posting on here :hug:

If you have been feeling so low for many months now Genette it might be a good idea to ask for some help from your doctor. Depression can be a part of Lupus as well as just a reaction to trying to live with it.

Lots of love
Joan:rose:

 

[Clare.T]

Hello Genette
It's good to hear from you but I am sorry you have been feeling so out of sorts. When I'm feeling like that and not much interest in my usual activities and everything seems such an effort, it's a sure sign of depression, if it lasts more than a couple of weeks.
I hope you'll feel up to visiting more often. We can stay in touch with each other without budging from home.

Many Hugs
Clare

 

[debatat]

Hi Genette

Sorry to hear you are having such a difficult time. Somedays its easier than others to cope with the challenges of lupus, but at 25 that must be extra tough.

In hope you feel better soon

Deb

 

[Pink Pearl]

Hi Genette,
I'm also new to this board. I am not new to lupus, have lived with it for most of my life. I am very sorry you are having troubles. I second that you may benefit from some medication to treat depression. I well know that holidays, and Christmas seems to be the worst, are the hardest when your body is not acommodating what you want it to do.

As with others here, I agree it is hard to deal with a disease that is not the same any two days running. This disease is an equal opportunity destroyer. It is also hard to look at this when your life is just getting going. Hang in there, there will be good days ahead. It may not be right away, but with time, and getting the disease under control, your world will stabilize. It took several years for it to work for me, but it did happen. Take care of yourself and focus on looking forward.

One thing that I did when I was having a lot of problems, was to cross off every other day on my calendar and on the "off" days, I rested and took care of myself. The next day I would run as many errands as I could do. I learned not to beat myself up because I could not do what I wanted, and to appreciate at least one thing every day. If it was able to play with my cat, walk outside, just one thing to give myself something to smile about. It helped me to survive the not so good times. Keeping a journal helped too. Once I got it on paper, I could let go of it and go on to the next thing.

Take care of yourself. I hope you can have a stress free holiday.
Hugs,
Sally

 

[iris.phillips1]

osy: hi everyone,
i want to thank you all for all your kind words it is so nice to be back on here and talk to people that understands me, it is also nice to see people on here i know and also im looking forward to meeting all you new people:grouphug2:


i want to let all the new people know that this site is fantastic and it has helped me a great deal and it makes me feel like me again after ive spoken to people i know your all get the help and advise you want hugs to all

lots of love genette xxxxxxxxxx:kiss: