Thank you everyone for your replies x.

[Dizzy4]

I have emphysema and ipf .. I have a nurse coming to visit tomorrow to talk me through this disease and offer support .. It is so difficult to talk to family as I feel such a burden .. My only son and his partner are awaiting the birth of their baby any time and I wouldn't dream of bursting their bubble , I feel so poorly some days I'm afraid to tell anyone . So to spare their fears and feelings I fight my way through the day .. Yet other days after complete rest I can function .. The more I push my self the worse I feel. But I'm afraid this disease is gripping a hold of me .. My lung capacity is at 46%predicted. I thought this was really good ... It's so confusing .. Does anyone else feel so much fear for the future .. I certainly don't want to start feeling sorry for myself. But. Crikey its a struggle xx

[scorpiolass]

Lung disease can be very variable and in the initial stage after diagnosis, we can feel very vulnerable. I am so pleased you have a nurse coming to see you. I think you could maybe talk to her & she can answer your questions. Also, maybe talk about your son, it is possible he has noticed you are not yourself & could worry about what is wrong. You take care & let us know how you get on. Love Margaret

[Hidden]

It does take time to come to terms with our condition but you will. You do have to take care of yourself ,eat well, rest when needed. Speaking to a nurse and seeking help here is the best you can do. We all have the ups and downs but still find our sense of humour shining through. Wishing you well. Joyce.

[amnihami]

Hello.

As has been said Its hard to come to terms. Iv e have my condition many years and its only the last 18months its effected my lifestyle. Was a shock!

Great to know you have a one to one visit with nurse. Make a list!

I'm fairly new on forum and there's a lot of support. As well as laughs.

Let us know how you're doing

Best wishes

Ann ☺

[Sooki]

Please join Pulmonary Fibrosis UK on facebook huge support,we are a closed group so anything you say is visible only to other members,there is a lot of info on there we have support groups set up in various parts of the country,I don't know where you live,and I hope you are being seen in a specialist IPF centre,Regards Sooki.

[2malinka]

Hang on in there. My lung capacity or FEV is only 14% and I still mange to get about. Yes, of course I have bad days when I almost lose the will. Then I look at my little cat and think about my wonderful family and I consider myself fortunate compared to some.

I find the BLF helpline quite helpful.

Look after yourself.

Malinka

[peege]

You're in the right place to share Dizzy. Hopefully you will feel a little better with being able to unburden yourself here with people better equipped to understand.

You sound like a very strong person (same here) and sometimes we're our own worst enemy. We waste too much precious energy keeping up a front, being all things to everyone, then at the end of the day we're the ones who become exhausted & ill and then no use to man or beast.

I'm glad you're talking to a nurse tomorrow. You need support and you deserve it too.

You might want to have a note book handy to keep notes or even ask her/him if you can record the conversation. It will probably be a bit emotional and it'll be hard remember everything.

Could you have a member of the family with you? Or a close understanding friend as a second pair of ears.

I hope you don't mind my advising you to talk to the family, sooner rather than later - it will be even more difficult once that precious baby is born. I've had my first grandchildren during lung ill health and it's really quite tough. You'll need all the energy to cope, you'll want to help them but it's so important to learn your limits so you don't overdo it.

Good luck tomorrow, I'll be thinking of you. P