Having COPD is like smothering, drowning and being claustrophobic all at the same time and then, having an anxiety attack!
What is COPD like?: Having COPD is like... - Lung Conditions C...
What is COPD like?
62 Replies
•
I understand where you're coming from but it's about living with COPD rather than letting COPD live with you.
I have a wife but I'm still me, I have children but I'm still me and I have COPD but I'm still me - it's an "add-on" rather than an all-encompassing.
At times I lay and listen to the laboured breathing but then I take control and mentally calm myself by forcing my body to slow down so that I, not the COPD, control how I breath. No, it's not easy, sometimes I (like, I guess, everyone else) want to just give up but then the COPD would win! That won't happen until something (and it won't be the COPD) forces the last breath out of me!
We can either control or be controlled and, if you checked my earlier posts, you'd see that it gets me down sometimes, just sort of sneaks up when my guard is down, but then I fight back because it ain't gonna win!
If it's sneaked up on you then keep posting - there are many wonderful people here who will support and help you through it - I know from experience.
Good luck, keep safe and breath easy!
• in reply toy_not
I probably should have said: What it is like to have an exacerbation? But it does not control me but people ask what it is like and this is who the post is for.
Also, you are very lucky because you have a wife and children because being completely alone with this disease makes managing it that much harder. Being alone is hard enough on an elderly person.
y_not• in reply to
Ah, sorry, I misunderstood the comment then.
In answer though, having a wife and (grown up) kids is a mixed blessing. On the one hand they are supportive and helpful (even though my wife is off to the daughters & grandkids today - I'm hoping to be fit enough to join her on Saturday so not too much support for the rest of the week!) whilst on the other hand I try to hide the worst bits, my wife knows nothing of the mental impact, when I feel really bad I go off to bed out of the way with the excuse of needing the CPAP machine so she doesn't see me at my worst.
Perhaps I'm wrong (I often am) to hide the effects but hey-ho that's just me!
Good on you.... although alone I have good friends and I am always cheery for them. smile and the world smiles with you...cry and you cry alone... But it IS. hard... ☺☺
Baily• in reply to
yes I must agree with that, am alone and would just love a bit of TCL at times... a cup of tea would do..😊
Shirat1• in reply to
So true winded, it's very hard to describe the difference it makes being alone And no one to bounce thoughts off of. This forum has been my safe place. On really bad days there is always a post that give me comfort and or hope, or I go to Vashtis posts and get lost in her stories!!!!
frieda• in reply to
I live on my own, I know exactly what you mean. I will never give up on me and will fight. It's very, very hard, at times and very frightening when your chest tightens and you struggle for breath, stand, rest on something like a table, concentrate on slow breathing in and out, as little breath you may have, it works. Most of all, try not to panic it will slowly come back. I've had COPD for 10 years, am 72 years old and still coping. Take care all of my COPD friends. Val
Brilliant advice y not
x
boy..great reply as am chomping thru some great Aussie steak.Course sneaks up when least want....nost times never does unless am feeling sorry for myself which is also ok....usually if having Texan steak .
Hi you are perfect. Every COPD patients should follow your way of handling.Thanks and keep smiling.
Hehe! My wife left home this morning for a few days - don't think she describes me in such glowing terms! Thank you 😀
Love that attitude 
I feel for you , I am long time sick with lots of different things . I tend to be like the chap who has a wife , but I have a husband who takes over when I can't . It's horrible feeling so scared and no one to turn too . All you can do is try to calm yourself and I know how hard it is . We none of us can speak for anyone and how they feel because they could be worse off. So keep your chin and know that I understand about the fear . Sending you a hug 😇🙏🏻
thanks
Hi y-not and winded .....can I be awkward and agree with both of you...sometimes I can fight it, sometimes try and accept it and sometimes it can overwhelm me.
• in reply toknitter
Ditto! I think we have all been there............except, maybe not as scarry for the ones who do not have to do it alone. It is much more comforting to have someone you care about there with you. Someone to remind you how to breathe, how to relax, someone to call the ambulance if need be...etc.
Good morning Winded. Obviously your having a rough night & not sleeping, me too, With me it's because I'm on Abs & steroids so I'm as high as a kite & don't sleep much. I don't know how I would describe "what it's like" I think the worst part is very seldom feeling well. Taking an hour or two to make the bed because I have to rest & get my breath back things like that. I feel fortunate that I'm retired so I can take life at my own pace if I have a bad night I sleep when I can. I too have a family, whom I love & are supportive, but they don't always get it. I will say that you never have to feel alone on here there's nearly always somebody about & I must say were a pretty nice bunch so keep posting best wishes Nan
I dont know cus i dont have it my husband does so i cannot say.
I have COPD of the right lung and I can empathise with all the above comments,especially the claustrophobic feelings,like your somehow locked in to this disease,I manage it alone,one problem in particular I have is expressing myself speech wise,I Finns it very difficult!
Some great posts from you all,but it can be very scary,pulmonary rehab is very good with helping you to understand COPD ,cope with it and learn to live with it.Personally i lost my confidence to go out alone, but after rehab i have just joined a gym and in the process of getting my confidence back.
Hi I start PR tomorrow (been waiting 3 years !!) for this. I have a problem though - PR is a 8 week course twice a week & I forgot (short term memory loss) that we are going for a short break - 4 days on 18 April !!? We both need this break especially other half as he has been my rock and he loves his fishing hoping PR won't cancel ?? xx
Yes, I've heard of re-hab. That would be great if there were centers near by, my nearest is 15miles from where I live, no transport only a taxi, which are too expensive.
excellent description, will let my family read it as they don't have a clue...just because I put a brave face on.. ☺
I don't know if I should apologise for the length of this but, now I understand the question this is my answer:
Day by day, the shortage of breath becomes the norm, we adjust the speed of movement to compensate without ever stopping to think why. It's the way of life for the COPD sufferer.
We watch others; did he/she just sneeze, who coughed? Am I in a high risk area about to begin the downward spiral to an exacerbation?
"Oh the kids have a sniffle" is enough to make the mental reminder not to go anywhere near for a week or two.
And then one morning (or during the night) we awake! In my case my resident Sumo Wrestler has ceased just sitting astride my rib cage but has spent the few hours previous pummelling my ribs like he thinks he's Mike Tyson playing my ribs like a xylophone!
Don't get me wrong, he's still there, sitting on my ribcage throughout but strangely whilst I feel like I can suck the air in getting rid of the Co2 seems to become an issue.
Best described as my resident now attempting suffocation with a nice fluffy pillow.
The lungs begin to burn, not a sudden sharp pain but a slow dull toothache type pain that just nags and nags incessantly.
Exhaling becomes a noisy affair, every movement demands muscle tension only possible by a fresh supply of oxygen which is in increasingly short supply! Muscles ache even though I've done nothing, the walk to the toilet leaves me gasping like I've just completed the London marathon, often ruining the reason for going there in the first place!
Any quick(ish) movement steals oxygen destined for my brain leaving that short of O2 and creating the drunken/light-headed feeling.
For some strange reason hearing becomes muffled (well, more than normal), the gunk on the chest needs clearing and, no matter how much I try to clear it as shown during PR it's all to no avail!
Talking, now that must be sooo funny to watch/listen to! Trying to get a sentence out is simple, the problem comes then I try to speak like nothing’s wrong and halfway through a word I run out of air or better still when the comma suddenly appears in the wrong place, for example, a conversation usually goes "Hello, How Are you?" but becomes "Hello, [suck in some air] How are, [exhale then suck in some more air] you?" - it must be hilarious to an outsider!
Occasionally, a lump of gunk is forced out confirming that the infection is in control as the tablets are broken out and war is declared!
Being a bloke, I'm hard; I can beat it and just carry on - as I said, I'm a bloke so I obviously know best! Well, that lasts anything up to eight hours before I collapse in a heap realising that maybe, just maybe, I'm not totally invincible.
Soon after this stage everything becomes a bit of a blur, bed, daytime TV (oh dear!), sleep, drugs, sleep, daytime TV (oh dear!) repeat, repeat.
Until a few days later when the Sumo Wrestler has ceased the attack on the ribs, repositioned himself back into his normal place, lost a bit of weight (a few stone) and a worried looking wife says "I'm made an appointment for you to see the doctor today", my response being, "Nah, don't need to see him, I'm fine now!" but the quivering wreck in the bed DOES do what I'm told.
It's always been a bundle of fun as described above except for last November then, having completed the drugs, seen the doctor for replacements I returned to work. A hundred and ten miles from home I felt awful, the infection was still there! A call to the doctor amazingly got the response of how soon can you get here? "About two and a half hours", Fine, just tell reception he replied and, upon arrival I went straight in another course of different drugs, a sick note for another week (spent like the above) and back to work.
That was the first (and thankfully only) time the drugs didn't work - that was one scary week!
Wish everyone an infection free year (well, we can live in hope!)
• in reply toy_not
Perfect. Thankyou y_not
I think we all go through such mixed days and feelings. Always trying to be the master of this disease but often failing miserably but still we go on and say "tomorrow will be better". I am so glad winded posted What is COPD like It certainly made me realise that we are vulnerable but how brave we all are coping. Thank you winded. xx
Camilla 1 know how you feel you put in to words excellent and it is very lonely because people don't understand hope you start to feel better soon
Very good analogy winded as that's exactly what it is like! x
• in reply to
coughalot:
Thank you.
I think it is easier to be brave FOR someone else, in my case I don't want to scare my hubby, or my daughter, so I act brave.Sometimes tho, at night, I hold my own hand.I pretend it is mom holding it.I get so tired tho, so tired sometimes.
Ithink we all try to be brave sometimes trying not to show how bad we really are.I used to try and hide how bad I really felt and then if things went wrong my family and friends would have a bit of a scare, so I tell it as it is now and it makes life easier the tiredness is overwhelming at times you must rest easier said than done sometimes take care hugs to you
What is COPD for me it's made me old well before my time. I watch my sisters who are 12 and 13 years older than me dance, sing, and run after grandchildren, while I sit and watch . I'm 58 in a few weeks time and I feel so much older. I had to ask my oldest sister who is 71 to walk up a short hill to check something in shop last week. I have lupus and fibro that causes its own issues. Nothing gets to me as much as having this horrible desiese. Maybe it's because I smoked and caused it myself. My older sisters never smoked. Sorry for such a negative reply but I'm being honest.
• in reply tocopdber
copdber:
Honesty is what we all want and need on here so we can "compare" our own problems, dilemmas and heartaches and how we deal with them, resolve them or are still bothered by them...Thank you for your honest post as it is helpful for us to listen and learn.
copdber• in reply to
Thanks winded, it's good to talk honestly with people who understand and not feel bad about saying what's on your mind
I can totally see where you are coming from. I am 46 was diagnosed 2008, year after my mum died from cold. People I thought were friends are no where to be seen, of course you. Get the birthday n Xmas card! But no time which is the precious gift anyone can give. I am single and have a daughter of 14 and disabled son of 25, people in my family expect me to carry on get cross for me losing paper work cos of my brain fog and I feel as though my dad and my friend whose a nurse and visited me twice last year(she lives 10min walk away for her) not me, should understand they don't. Or maybe they don't want too xx
Copd, sorry tablet keeps correcting me!!
Sorry to hear that junegirl. You have an awful lot to deal with. Hard enough to be a single mum but to have a disabled child must make it harder. You were also very young when you were diagnosed and to have lost your mother only the year before I can't imagain what you must have gone through. One of the reasons I don't like to complain is there are always worse off than yourself.
Ah thank you for that, I know what you mean I try and look to the positive side of life, I guess this week has been hard health wise, and I'm really trying to push myself and then getting down if I don't do as much. It's so good to be back here though and talking to people that completely get where your coming from. So once again thank you xx
• in reply tocopdber
copdber:
Always. I agree. Someone out there is worse off than ourselves.
But we want all the input we can get on here. And, I don't think any of us on here consider it complaining when we tell of our circumstances. We do it with empathy and consideration and caring for others so it may somehow help them either in spirit or in dealing with the disease.
So, no matter how bad your disease is, please comment when you have something to add because even if it helps just one of us, I consider that good.
• in reply toJunegirl03
junegirl03;
Can't believe a friend (?) would only visit you two times last year when she only lives a 10 min walk away?!
I am not sure if others want to know about OUR problem! Maybe they have too much going on in their own life and are afraid they might have to put their self out a bit by just knowing about our problem and they don't want to feel guilty? Like the saying goes: "What they don't know, won't hurt them."
It sure would be a nice gesture, though, if they at least acted as though they cared.
You have a lot of weight on your shoulders having children to take care of, yet, so I commend you and please take care
Junegirl03• in reply to
Winded
Thank you for that I try really hard but we are human and have our down days, thing that gets me is she is a nurse and she knew my mum before she passed I guess it hurts but like a lot of people u do your best for others and kinda feels like they abandon you in your hour of need. So sorry for the ranting, it took this friend 7 years before she actually believed I had copd even though I was under the team.! But thank u for your reply just want others to know they are not alone if this happens to them xx
• in reply toJunegirl03
Yes it makes us feel a little better knowing there are others like us out there who suffer and struggle with this awful, ugly disease and we have no other human around to alleviate our fears and to help us...by just visiting or talking to us.
And try to find a companion to be with until you die, let alone a friend or neighbor or family member to occasionally visit or call...I mean, who is going to want to get involved with someone with this disability?
I did a little test once because I casually belong to a couple online dating sites. NOT that I want to marry anyone! Gracious, no. But to find someone to talk to and hang out with.
The first thing they say is , "Hi how are you?" So, I thought I would tell them. Well, out of the last 10 that contacted me, I mentioned I was presently on oxygen from a recent hospitalization.
I had 3 that wrote me back asking what happened, telling me to get well, etc. Then the messages just stopped.
Lonely forever, I guess......
Junegirl03• in reply to
Hi winded
Thank you for your reply this friend took 7 years to believe I have copd despite her being a,nurse and seeing my mum suffer before she passed. I don't mean to rant but you try to be a good person and be there for everyone and their problems and yet in our hour of need where are they? To me it seems like they just give up on you, you don't get invited out because of times due to illness you couldn't make it and then people vanish from your life. Just want anyone else who goes through this to know they are not alone and if I can ever help anyone I will do my best xx
How right you are Winded, hit the nail on the head! Xx
I think we all know how you feel and what it feels like to leave that wonderful world that we took for granted.
How do you all really get through your day..and those nights.
If only you knew how meny post and replys I write to you all...but they never get posted...I read them a few times and hold my mobile and think over what I've wrote untill my hand is cramped with needles and pins...
What's the point...just get on with itI hear myself saying.
Anyways i will tell you that my inhalers don't really do much for me...as much as breath them in ..and for as long as I can hold my breath for...it just dont feel like its doing anything. ..
But when I hold my beautiful bundle of six months old daughter and press my big nose to neck and take in the deepest breath I can do...my lungs come to life again...the senses in my head dance with excitement. ..I can't help it but to do it again. ..it always makes her smile and sometimes it makes her laugh out loud.
• in reply to
sailer65:
I think that would awaken my senses and calm me and make me forget for a while, about this dreadful disease, too. Give her a few sniffs for me too!
Silly-mummy• in reply to
Andy that is so beautiful, I feel the same way about my amazing 2 1\2 year old granddaughter it sure makes us appreciate what we have and makes it all the more precious x
• in reply toSilly-mummy
silly-mummy:
Yes, us aloners mostly are envious of you.....I never have and do not get to see grandchildren. Or, any children, for that matter. You are lucky.
Silly-mummy• in reply to
Winded I'm sorry if my post upset you and I am sorry that you don't get to see grandchildren or any children at all. I was just saying that my granddaughter is my reason for trying to get through each day x
• in reply toSilly-mummy
silly-mummy
It didn't upset me dear. I am only stating a fact of envy for you and want you to keep on appreciating it with your grand daughter.
Silly-mummy• in reply to
Thank you, I will x
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