Just need to vent.

[millerag75]

I hate having bullous emphysema. It's advancing so fast and a year ago I only had a cough, now my bullies keep growing. Keep getting infection after infection. I have a 2 year old, I can barely keep up with her. I just want to sleep. I don't know how people manage COPD for years! Guess I'll get used to it. Also people don't understand it, and I don't want to be a bummer complaining and explaining.

[Hidden]

Is understandable .. vent away I to have emphysematous bullea ... If you keep geting infections you should be on antibiotics as coughing all time is not good for ya.

Are you under lung doctor

[millerag75 in reply to Hidden]

Thanks for replying, yes I am under one, she's a great one. I have an appointment soon with her, my regular dr has been trying to manage me for 6 months. My lung dr was on maternity leave.

[y_not]

millerag75, I'm probably barking up the wrong tree but with COPD [53%] so not too bad, I always thought the tiredness was caused by the COPD - pretty obvious really.

Then last November, in the middle of an exacerbation that wouldn't get better with the emergency meds, I saw a locum GP. She read my notes before saying, "I want you to get a sleep study".

January saw a one night test, diagnosis of moderate sleep apnoea, CPAP trial and now on regular CPAP treatment.

I am now awake! Still breathless, aching muscles & joints, my own personal Sumo wrestler still sits on my chest etc but AWAKE!

Like I said, probably barking up the wrong tree but ... a one night test? Got to be worth checking, even if it just discounts the option.

Not sure if I should wish you good luck or even what good luck looks like - a CPAP machine every night for life [?] is that really good luck.

Hope you find a way to ease the tiredness!

Tony

[millerag75 in reply to y_not]

Thank you for replying. I'm so happy you found out what was making you so tired. My lung dr had considered that, although even if I had sleep apnea, I wouldn't be able to use one because it could cause a collapsed lung.

[Evine]

I just want you to know that you are not alone. I don't know about your condition but I have a 4 year old and a 16 month old and they are exhausting as it is - add an illness to the mix and it is shattering. You must not feel guilty at all. As someone responded to me on this forum - you must accept a new normal - and pace yourself. It is hard but acceptance is half the battle. I totally know what you mean about people not understanding certain lung conditions too and to explain does feel like 'moaning' but it's important if you feel it will make a difference. I truly hope you feel better soon - my thoughts are with you. Vent away! X

[millerag75 in reply to Evine]

Thank you for replying, wow I don't know how you keep up with two so young! You're words are absolutely right. Accepting a new normal.

[Hidden]

It must be very hard for you to cope with a toddler when you have this complaint and my heart goes out to you. Life can be hard at times. I do hope that you have got some help so that you can have some rest times. I am afraid with this disease apart from professionals there is no one but yourself that can tell you how to handle it. These infections are a real pain but Just try to take each day at a time and when you have a good day make the most of it. As for complaining, we are all on this site to complain, moan, ask for help or whstever so don't worry about that. Anything that can help you to cope! Take care.

[millerag75 in reply to Hidden]

Thank you....

[duffer]

Hey there are lots of us out here who do understand how it feels! It's bloody hard to get through each day! I agree with the post telling you to get checked for sleep apnoea. I have had emphysema for 15 years and the last 11 of those were as a lone parent. My daughter was 8 at that time, so I sympathise, I don't know how I managed to keep going sometimes, but as a parent you just do. My BIG advice to you is to review what a 'normal' day is. Forget how you used to do things, remove everything unnecessary from your day (and life) so you can pace yourself to do everything slowly and in little steps. Don't feel alone, you will get lot's of support from the lovely people on here and we all like to vent sometimes!

Good luck. Joe

[bayleyray-uk]

You can moan away to us, we may not have your particular lung disease but all of us have some kind of disease or who have loved ones who do. My baby is 40 now and although I do not have to look after her, hubby and myself do look after our grandkids (6 and 4) 3 days a week and that exhausts me so I do understand how exhausted you must feel.

I'm afraid peoples reaction to our illness is something we have to put up with at the moment, it's not right but change of attitude takes a while. Hubby still get's it wrong sometimes, like parking in obscure places or now I have a blue badge in the furthest empty disabled parking spot from the front door of the store as he quotes 'I don't want the car to get scratched'. So now he gets a 'oh that's all right then, don't worry about my lungs' I used to just mutter the words, now I say them out load.

When you feel low rant to us, we will listen.

Sue

[punkyb in reply to bayleyray-uk]

HUSBANDS AND PROBABLY WIVES CAN TRULY BE THOUGHTLESS CAN'T THEY? Sorry about the caps...So tell the husband to drop you off at the door and go park. Then have him come pick you up too!

[Hidden]

I feel for you my children are all grown up now. I don't know about your condition I have COPD and possibly bronchiectasis and find it hard just looking after myself. But I try not to let it get me down just do things when you can and take your time do you have someone to help. And we all need to vent now and again don't worry about that take care

[SquirrelsHolt]

I can relate to what you are saying and many people on this forum will also. Some days are better than others and it is a case of pacing yourself and not to beat yourself up on the bad days. Once the better weather arrives I think it will cheer us all up a bit. Take care.

[peege]

I whole heartedly sympathise, it must be so difficult in every level emotionally and on every way physically with a two year old.

I've not noticed many members here with bulbous emphysema over the last few years, I can only suggest you contact the BLF help line. Email them with your phone number and copy in your post above for some support, both medically and emotionally. They have counsellors as well as medical advice/understanding as well as benefits advisors. Please contact them, you've nothing to lose.

Very best to you, Peege

[USAhousewife]

This is the same devil that I have. Between the being so short of breath at times it freaks me out and then wake up or get a sharp pain in my chest and go into all out scared to death that I have another lung collapse, I can't tell you much in the way of reassurance, but I'm up for listening to you any time.