scared

[Dion3844o1]

fed up AGAIN im being told iv got this mctd/ild but what is is ?how bad is it ?is it termanel?cause not even the dr can tell me i dont wanna live with this silly things people take for granted like going for a bus huh im nearly on floor out of breath or socializing in general i end up in that much of a coughing fit id rather stay home .all these plans in my head are never gonna happen i think il always be on my own because im always poorly and its a case of well its not ment to be i try hard really hard to think posative but for some reason it dont happen so fed up now.

[sassy59]

Hi Dion, it is scary to have lung disease and lots of other diseases come to that but my husband has ILD (sarcoidosis) and my daughter in law has lupus (mctd). They both do well because they look after themselves. My daughter in law has been battling breast cancer but watches what she eats and goes to the gym.

Don’t let illness win and live your life to the fullest so far as you can. You are in the right place for support and info but do seek help from your doctor too. Don’t think about dieing....get out there and live.

Sending lots of positivity your way. Xxxxxx

[Dion3844o1 in reply to sassy59]

Thank-you x

[mrsmummy]

Hi Dion. There is a very good Lupus site on here if you wish to follow it. healthunlocked.com/lupusuk

[timCHP]

Hi Dion...

It is really frightening to be told you have any kind of illness, and having an ILD - an Interstitial Lung Disease can sound particularly scary. .

I also have an ILD. Mine’s not caused by MCTD. But it is similar as it’s triggered by a problem with my immune system.

Here are 2 things to remember:

1 - You can get treatment to make you feel better but sometimes you have to make a fuss to get it.

Hopefully you already have some treatment in place. It might be as simple as taking some pills, or maybe some more complex tests and treatments. You should be seeing a specialist in a hospital. Not just your GP. If you are, then they will help you understand what you have and how to manage it so that it doesn’t have to affect your life. If you are not, get your GP to refer you, insist if you have to.

2 - Look after yourself.

Take some control back and you will feel better. You are already being positive by asking for help. Try to be as strong and healthy as you can - eat well, exercise as much as possible (walking counts).

I think there is no reason to think that you can’t carry on living exactly the life you want to if you have the right advice from a specialist doctor.

Good luck!

[MELNEL]

I am sorry to hear that you not well Dion, but it is important not to think negative about yourself. All things are happening for a reason and some are not always happy moments. Please darling you are not ALONE ❣️❣️and I know it is not always easy to stay positive, but it will help you to see more clearly, you always have a choice in all things you doing, choose something to feel better 😍😍 do some crazy things you never did before encourage yourself be brave 😘😘😘 happy to help you with that 😉 not to fall there is always someone to catch you!! Like some many her in the forum!! Don't give up!! Every life is precious even yours honey don't forget that!! 😘😘😘

[Dion3844o1]

thankyou for replying if I knew what I was dealing with it might help but if the dr don't no apart from there are over 200 diseases and I can have any I cant have a lot of meds because of my bipolar anyway ty again