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Life With Lupus

Just a little of your time


#1

hello!

I was diagnosed to have lupus in november last year (2016) and this thing is no joke. I have a moody personality before this but can be the crazy and funny girl around my friends but the time i was diagnosed was when we finished school and everyone go their separate ways to different universities and even if they’re in the same university as me, they all take different majors. so i don’t really have the time to see if i can still be the same around my friends…but around my new friends i made, i guess i’m really quiet and shy. whenever i feel down, it shows on my face and they will ask if i’m okay so i said i am because it’s not like i’m gonna tell them everything.

however, at home, i can say and admit, i’ve become worse, as a person. I don’t mean to and i try my best to hold myself together but i couldn’t. I either ignore my family or act all too cheerful and whoever i am now, i hate who i am. this is not like me. but i also didn’t know who i used to be.

School is hard, i hate how they make me feel anxious, panic and cry whenever there’s a deadline to meet. My major is nursing btw, midwifery is currently my minor. i don’t even know if i have made the right decision, the only concrete reason that i confident of is because you get a job right after you graduate, i want to get a job so i can support my family and support myself. i know i’ve said this over and over again, but goddammit it’s hard.

i wish i can just stay at home and sleep all day, i would sacrifice all my unnecessary wants like makeups, dolls, games and whatnot if in return they let me stay at home. I would force myself to do all the house chores if they let me quit school. I will cut back my meals so that they won’t have to worry about food bills(plus i eat too much anyways, thanks, prenisolone. :unamused:)

but everytime i want to mention this to my mom, i can tell she’s unhappy and disappointed so i just had to move on and curse my life.

SENSITIVE DONT READ IF YOU CANT HANDLE IT SORRY
sorry for this sensitive issue but i also MOST of the time, like 99% of the time, i think about death. what ways can i kill myself. even the littlest thing like walking, i would think, what if something fell now and take away my life, wouldn’t that be great? I also think like, if i manage to reach the third year of my univerisity year and got sent to (insert any country), i’ll make sure i go to (the country’s place with highest succesful suicide rate)

but every time i think so, i think about how devastated my family would be, how heavy my sins would be and so on.

i think that’s all i want to let out. i have a question for guys that have lupus too, how much has lupus took away from you and what are you doing with your life right now?


#2

Ah Nur. I’m sorry you’re finding yourself in this predicament, but I’m glad that you found this group. I’m Seenie, and I am a volunteer with Ben’s Friends, and I visit all thirty of our communities to help out wherever I can. I don’t usually post on communities, but every now and again I come across a post that I’m moved to respond to.

I don’t have LE, but I do have a chronic autoimmune illness that has gifted me with a great deal of pain, crushing fatigue and physical limitations. And along with those, has come a degree of social isolation and lifestyle changes. (I have severe Psoriatic Arthritis.) You’ll find that here, people “get” everything that you are saying.

One of the most difficult things about having a chronic illness is to learn what your “new normal” is, while also on the quest for treatment which works for you. Yes, you can do it, but easy it is not. It took me almost two years to find a good doctor and excellent treatment, and I remember well that I wanted to sleep my life away in my isolated little brain-fogged world. I recall feeling like a stranger to myself, finding it hard to remember what my real life (and the real me) was like. Oh yes I do, and it was a pretty dark time for me too.

The good news is that, in all likelihood, you will find treatment that will get to your “new normal” where you have a life again. But that may take a little time.

One thing that I would consider doing is sharing what you are going through with a few more people, particularly people who are in a position to help you. I’m guessing that your Mom wants to talk, but is afraid to upset you more by doing so. Could you write your thoughts down for her? And some people at school need to know about this: have you gone to the counselling service, or to the head of your department to explain your position? I can understand that you don’t want to tell all your friends, but I think you really need to tell those close to you, and those who can offer you help.

I know that Brunei has good medical care, but LE care can be a bit specialized. Can you access a Lupus specialist there, or will you need to go KL or Singapore? From experience, it is well worth the effort of finding someone who is specialized in your exact condition, rather than someone like a general rheumatologist, especially when you are so young.

Nur, thanks for the alert, but we can handle it! That’s why we recommend that people use screen names that give them anonymity: it makes them more likely to open up. We’re glad that you are talking about your dark thoughts: that’s the first step to feeling better. We know that our members sometimes need more support than we can give them in this forum, and that is why we have included the HELP tab on the upper left hand side of your screen. Please find someone closer to home, though, who you can talk to about your suicidal thoughts. In the meanwhile, here’s something supportive and thought-provoking to read.

We’re glad that you joined us, Nur, and we hope that you are as well.

All the best to you.

Seenie from Moderator Support


#3

hey Seenie, thank you so much for your time and reply. I’m sorry to hear that you have a chronic autoimmune illness. Yes you are right i’m trying to find what would be my “new normal” is which is one of the reasons why i join this community and also others, but yeah, i have yet to find one. I want to learn more because so that I can share with my family and friends so that they can understand me.

I did have consultation with one of my teachers but i stopped going there because as soon as my lessons are done, i just want to go home but i recently thought that is very inconsiderate of me so i plan to schedule another meeting with her and share some things.

Yes, Brunei have great medical care and I can’t thank them enough for what they’ve done for me and my family, i’m hesitating to see a specialist but recently, i feel determined to go and ask my current doctor about it during my next appointment.

again, thank you Seenie for reading and replying :relaxed:


#4

Nur, a Lupus specialist will make an enormous difference to you. Please ask to go to one even if it requires some travel. To see my disease specialist, it’s a six hour trip there, an overnight stay, and a six hour trip back. It is worth the trouble and expense to me because after the first consultation, they prescribed treatment that my “general” rheumatologist didn’t, with the result that my disease improved enough that I didn’t need to visit the doctor for several months. Really, it’s worth the trouble.

Good for you, keeping in touch with your prof: you have no idea what they can do to help you cope with struggles! (I’m a retired school counsellor: not only can teachers work with students with special needs, most of them like to help when they are approached in a sincere and honest way.)

Thanks for the reply! All the best to you

S


#5

I’m a 38 year old male that has lupus now for 8 years. When first diagnosed the dr I was seeing didn’t know much about lupus but did the best he could. I kept getting all kind of Lil issues so he Suggested that I see a rheumatologist. I lived in Cali all my life so he referred me to a Rheumatologist specialist. I go in for a Examination and other test and get a call back asking me to go to the er cause my brain was Extremely swollen. Next thing I find out it’s 3.5 months later and I went from living in Vegas back to Cali. I did a lot of research on what I have what to expect and how to deal with it. If you have close friends you feel comfortable with then do research and explain what lupus does to you. And if you really don’t feel comfortable talking to people about your lupus go to a lupus website that explains what lupus is and either send them the page or copy and paste what you what them to know and hopefully they will come to you with questions. You should really read up about lupus on what it dose to you and what to expect with it and how to live a happier life. It took me 3 years after reading a whole lot of material about what I’ll never get rid of but how to cope with it. Feel free to ask any question you may have and we are here to help you are not alone and I don’t wish lupus on anyone