Lost and Alone In Lupus.

I Have Lupus.I was diagnosed 8 weeks ago after many years of not knowing what was wrong.All i knew was ...there was something. I was in London for 4 days and had a flare on the first day...couldn't walk. No idea how i got through those 4 days.Came home n went to bed for five days.From then i was never well.Eventually i seen a Rhumatologist who immediately addmitted me to hospital for tests. The results devastated me,still do.I'm finding it so hard to come to terms with.The depression is unbearable at times to the point where i o/d last march.I don't want to leave my bedroom let alone my house,when i do i feel panic.My life has turned upside down.Anyone else feel like this?

Dorothy Dorothy
56-60, F
5 Responses Jun 5, 2007

I too have a similar story !! I hate it when my legs give out and my knees swell I miss my life as I sit and watch it come and go day by day night to night wishing for better days and depression is the worst

I see that you wrote this on June 5th of last year and I hope that you were able to learn that Lupus isn't the end....I was diagnosed 2 years ago (my Senior year in college).....it was tough...confusing and frustrating. I just wanted to do the things that I did before without worrying about the sun of if I should make plans (who knew how I would feel that day!)<br />
<br />
The many things that saved me were:<br />
<br />
1) An amazing doctor that is protective like a 2nd mother<br />
2) My amazing boyfriend who only knew me for about 4 months when I got diagnosed and stuck it out with me and is still with me to this day<br />
3) Friends Support<br />
4) Family Support<br />
5) Lexapro (haha)<br />
<br />
I still go through ups and downs, but one day it won't be EVERY day that you are down...its a tough thing to come to terms with....and incurable disease...<br />
<br />
If you ever just want to share stories...please do - you are not alone.

Are you seeing a doctor for your depression? If not, I think it would be a good idea to see one to help you through this rough time. I take medication for the anxiety and depression that the Lupus has caused. It may be worth checking into. Maybe see if you could see a counselor too. I see one and it does help. Good luck and I hope that you are feeling better emotionally. It's not fun being depressed, etc. <br />
Kacklebird

Hey Dorothy,<br />
The above advise is right on...don't try to go through it alone. Knowledge gives strength...get all that you can. <br />
<br />
I was diagnosed with Lupus about 20 years ago, first just discoid and within a few years, systemic. Coming to terms with having a chronic illness takes time and reflection...be kind to yourself and allow yourself to grieve...for a while...and then decide if you want your illness to dictate the course of your life or do you want to learn to live well with Lupus? The Arthritis Society has been a wealth of info for me.<br />
<br />
Anxiety is just part of the package for some of us. Self awareness while you are having an episode is the first step. In time you may come to know it as just another feeling, like happiness or sadness. In the meantime, do take your meds on time, make sure your pain level is managed well, and learn to laugh at yourself. Challenge yourself each day, just one step at a time, to go outside your comfort zone (your house, workplace, or wherever it is that you seclude yourself) and before you know it, you'll be back into the world you retreated from before your diagnosis.<br />
God's Blessings,<br />
seejay

I know I worked as a nurse and loved the sun still do , but can't do any much the cold I think is the worst for flare up and pains. , I pray everyone has an answer soon

I was diagnosed with lupus 4 years ago, and I am just now starting to come to peace with it. It ihas been a difficult thing to accept that I have a chronic illness and to learn how to live with all the problems that come with Lupus. But I agree with numbertwo, it does get a bit easier with time.....it is a matter of adjustment. I hope that we can be of support to eachother, I have also found the facebook lupus groups helpful.