feeling goona die

[ava97]

its a ridiculous post name.. I know..😂😂 but don't know wht to write...I am struggling everyday with my mind and body.I know I m doiing better.my doctor suggests me tht u r diagonising well.bt I feel tensed about myself.life is just a short time we can live.I am too young to accept tht I have a disease tht is not going to be ok.even my family doesn't think about in tht way.but they love me.ths the reason they think always positive.but for me!!I cant possible take this.always fear is on my mind that I am going to die soon...I have just started my life 😫😫 how I am going to do cope with this.its something that is really scary for me..that in our country there is no lupus institutee or there is no any hospital and even there is lack of professor and doctor.in our country there is not much lupus awarness forum.and we have only some professor regarding this incure disease..so really there is no hope to face any challenges in living with lupus.really ffeeling helpless.

[Lula76]

Hi Ava - I'm so sorry you're feeling this way. It is a scary time and you're right that the condition is not well understood BUT you have a diagnosis (do you?) and this is a massive achievement compared to many of us! It sounds like you are under the care of a doctor so this too is good. Lupus UK should be able to give you lots of info to help demystify the illness a little and to help you process your diagnosis. You will need to adapt but by no stretch is your life over. Is there a particular symptom that is worrying you when you talk about dying? I think you need to give yourself space and time to process everything and don't be afraid to ask questions here. X

[ava97 in reply to Lula76]

thanks for understanding me...thanks fpr suggestts me great idea.there is some symptoms also.but don't know whether I shouldd give importace to this..I am on 5mg steroid one day after...on but alwz there is a fear inside me that if I m on too short level of steroid then it can affect my kidney and if it is than there is so much worry to.cz if any patient involves in kidney problem in our country it is so costly to diagonise and even there is lack of understanding lupus doctor.we don't have prpper treatment in our country regaridng lupus already told you

[Paul_Howard Partner LUPUS UK in reply to ava97]

Hi ava97 ,

When you see your doctor do they do urine dipstick tests? These are inexpensive tests which check for blood and protein which could help to reassure you?

[ava97 in reply to Paul_Howard]

nope.they just give me blood nd urine test.

[Paul_Howard Partner LUPUS UK in reply to ava97]

Hi ava97 . If they are doing blood and urine tests then you are being well monitored. A urine test is ideal for picking up any early signs of kidney problems in lupus.

[ava97 in reply to Paul_Howard]

huum ur right.I have not done those test cause of my exam is going.

[Sheole]

Hi, I too went through this all consuming fear. I spoke to my family dr & a counselor. After many sessions it has helped. This fear, is now a thought I have. But that's all, just a thought. Some days a little more but not near what it was. The stress of this fear is not good for us either. Take care!

[ava97 in reply to Sheole]

thnkz..pray for me to be courageous

[Sheole in reply to ava97]

You can do it one step at a time. Don't be afraid to ask for help. Positive selftalk instead of negative. Be your own best friend instead of enemy. Will pray for you. 👍