COPD Friends
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Horrible disease

The holidays have been tough for me, as I'm sure they have been for others suffering from COPD. My partner simply refuses to believe there is anything wrong with me, and if I want to back out of a holiday party or dinner she gets angry. She thinks COPD is like a mild headache. I just got back from a dinner party and it was agony. But no one can see it. I can do a lot of things other people do, but what they don't know is that while they're doing these things they feel fine, but when I'm doing these same things I feel terrible. I'm so sick of being sick. I don't know what to do. I've been with this woman for 15 years, and she is all I have. But I feel that I must tell her to move on with her life and to leave me behind. I was a normal person for the first 14 years of our relationship but in the last year this thing hit me and hit me hard. It's especially frustrating because I quit smoking 23 years ago. I never expected this to happen. I know there is no cure and I'm only going to get worse.

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I’m not sure what to tell her, but I would start with COPD is the #3 killer in the U.S.A.

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I feel your pain, my wife was the same for awhile. I think we get real good at hiding symptoms because we don't want to appear weak. I don't do that anymore...when I am short of breath I stop and do breathing exercises, or rest until I can get going again, she will see just how it really is. Also, rehab programs are important as is exercise. I truly believe although there is no cure you can slow it down to similar or near regular age loss of function by staying active.

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thanks, Schmicter, for your reply. I think I was having an especially bad day yesterday. I agree about exercise and am enrolled in a rehab program and doing as much walking as I can, sometimes up to 5 miles at a time. So, how does your wife handle it now? I don't think my partner can put up with it much longer. It would be interesting to know how many COPD patients have been abandoned by their partners because of this disease, because it limits their lives as well. This is not what she signed up for, as they say.

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Strange but my ex husband of 25 yrs ago came back into my life after learning i had copd. He came and got me out of a higher elevation and relocated me to sea level and clean air. Good pulmonary rehab here to give me a better quality of life. We are now just two senior companions helping each other through life. Get to pulm rehab and you will find it helps greatly. If she won't hang with you through this, tell her to move on. You don't need the stress, You need to work on your health. You can lead a full life, even though you may have to do it slower. keep the faith, you can do it!

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That's a sweet story that your husband returned in you time of need. True love, I would say. Love is not words but action, and he acted.

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She has become much more patient about it and seems to understand more. We are over 40+ years together so we are not going anywhere. I also walk a lot and exercise, it makes a huge difference...just keep moving forward, there are many years of great times ahead. Besides...I am pretty sure they signed on to do whatever it takes!!!

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L guess one has to do what you think, but do some praying about this first or see a minister or councilor to help you thru this with her.

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Even though I feel like crap I try to do things that make my wife happy. We have 3 grown children who are not much help and if it wasn't for my wife I would be alone something that would be even harder to deal with than going out with her and doing things together. My doctor has put me on oxygen, only when I need it do I use it, she sees me when I'm not feeling good and understands the sickness better. Hang in there , make her happy and hopefully some day she will understand because life alone has got to suck.

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Hey, I hear you. Like sittingvthrough my daughters concert, trying not to cough, turning b blue, having to be conscious of breathing all the time.But there are things you can do. Personally I take a whole slew of medicinal mushrooms for my immune system. If I get a cold, it end in pneumonia. Last bout I cured at home with garlic ginger tumeric my mushrooms. No meds. One thing you really should try is NAC, a natural amino acid that keeps my lungs pretty clear. DO NOT let the Dr's convince you there is no hope. I started this journey with a case of TB which left me with 20 percent of my lungs, I smoked, I do carpentry, lots of dust. I use no inhalers, no steriods, nothing but natural supplements and I'm doing pretty well.

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Hi! What natural supplements do you use? How much NAC do you take? I’ve heard Ginseng is good for this. I would love you to share your natural remedies. I’m so scared to use the drugs my doctor gave me. Before it got FDA approval there was controversy over severe heart problems from this new drug. Thanks so much for any advice.

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Hi, I dont know where you are on the spectrum of damage, but I imagine II'm pretty bad. Firstly, I avoid germs, if I get a cold, I get pnuemonia, last time I treated it at home, chopped raw garlic in soup, a concoction of ginger tumeric onins and honey (found online) breaks up congestion, and since I came home from the hospital the last time Ive been taking NAC 600MG TWICE a day, cordyceps a reishi blend my father sent me IMMPOWER, also a mushroom blend and magnesium. All these can be found online under naturl remedies for COPD. It works for me, only have trouble if carrying heavy stuff upstair, no running, bought myself a Newfoundland pup last year, he's a stuggle, but other than that andcavoiding extreme cold, No one would know my struggle.

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He, Newfie, thanks for the reply. Are you on any pharmaceutical meds? Or just all natural? I'm on Spiriva and Symbicort. I'm "moderate" on the spectrum of damage. In fact, just had a breathing test yesterday and my fev1 was 71 percent. Pulmonologist seemed to think that was great, but I know it's not "great," just not terrible. I feel plenty crappy plenty of the time. She also didn't like the idea that I was taking Xanax for my anxiety, prescribed by my PCP. She said she would never give it to me. I would say I'm suspicious of natural meds, but only out of ignorance. Have you found that they improved your breathing? That's my problem, SOB. I do very little coughing.

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I went into the hospital last fall, with pneumonia, after a brief cold. I was in a complete panic, unable to breathe. Let them do what they wanted with me, steriods, breathing treatments, antibiotics. The steriods made me very agitated. Upon release, I swore off all, meds, avoid Dr's, as they just want to medicated. I was still sufferingvwith some anxiety (who would not, not able to draw a breath) and found a nurse/practitioner who prescribes 1 mg lorazepam daily, as needed. Its a very low dose, but helps when I have go into the woods alone, I make rustic furniture. Some days I take less. But never more. Apart from that no meds. I'm still hiking around, slower, but I can do it. I just dont by into the"this is progressive, your doomed, you must takecthese chemicals. You should research some of these remedies, Make sure they wont interact with what you aare taking and see howcyou do. Good luck!

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Forgot, myes the coughing is important, must break up the congestion, because I take so many different things, not sure

But suspect the Nac is the key to breaking up the mucous.

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I’m really scared of the meds the dr wants to give me, Trelegy Ellipta, which is a combination of 3 different drugs that you inhale. This is after I was told I have “a touch” of emphysema. I know I am going to try the natural route. I used that inhaler for two weeks and haven’t really been able to sleep...probably the steroids which are not good for you and I really cannot tolerate at all. I want to take Tai Chi and Yoga because it looks like exercise is so important. I’m just glad to find this site to have someone to talk with about this new stressor in my life. :(

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Definately recommend that you research these remedies. The side effects are horrendous from most of the precribed meds, especially For a touch of anything, they are crippling and never address the problem, just the symptom.

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Thanks so much for the advice. Seems like most people don’t even question these drugs. Just don’t feel like mine is to the point of desperation. I try not to judge others, everyone’s different. I did have some wheezing and became conscious of my breathing, no coughing at all... and the wheezing has gone away. Going to the vitamin store for supplements this weekend. Thanks again 😊

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You are truly inspirational and have cheered me up so much god bless you

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Sounds like you would benefit from oxygen if your not on it yet. It is surely a constant struggle to breathe. I don't leave the house any more except to go to the dr. It's just too much for me. Others don't understand the struggle we live with because we tend to hide it pretty good. I don't do that any more . If I'm having a hard time I say so and do what I need to feel better. You could maybe take her to a dr appt with you or have her read these posts and other reference materials. That may help her understand what you go through just to breathe. Good luck and god bless!

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Don't give up on your partner, have her try to take a breath through a coffee stirer and she will then understand how hard things are for you. Plus it takes time for pulmonary to find the right combo of drugs that are just right for you and you may need oxygen to make things better. I know have 3 inhalers, one pill, oxygen and during the winter I take Zithromax daily for 6 months. So far it' hasn't been too bad a winter for me,even thou we are getting a very cold winter. I just don't go outside. Keep the temp inside the same all the time, as change will cause a flare. Exercise as much as you can even if it's just walking and drink lots of water, this will help keep the mucus thinned out. Get into pulmonary rehab as soon as you can. Hang in there, you will find a way to have a life and this horrible disease.

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His, Lorbic, thanks for the reply. This is such a strange disease. I was diagnosed moderate emphysema/asthma about a year ago. Quit smoking 23 years ago. So it took all that time to sneak up on me. The last few days have been great. Went to rehab the last two days. When I'm not in rehab I'm walking up to 5 miles a day. Feeling quite well. I'm on two inhalters ( Spiriva and Symbicort) but no oxygen. At rehab my ox level never falls below 96 or 97. But then ... then, sometimes it all goes to hell, and I feel like hell. I never feel like I don't have COPD, but sometimes I feel pretty good. Can do just about anything. Other times I feel like crap and don't wnat to go out or see anyone. You know what's the best thing for me? Half a Xanas with a cocktail at night. I know some will say Oh, my, you will become dependent. But am I not dependent on inhalers -- for life? So today's a good day. But on bad days I am so down in the dumps. I do agree that exercises is very, very helpful and I'm trying to do as much as possible. As far as my partner, she just can't accept that i'm ill. Her mother died from this disease. She was on oxygen and still smoked till the end. Couldn't walk from the front door to the mailbox. Since I can walk to the mailbox, she must figure I'm not too bad. And I'm not TOO BAD, but I've got it and I know it. I mean, I was diagnosed by my PCP and a pulmonary specialist. The big question is: can I keep it from progressing? I don't know if I could emotionally and mentally handle 24/7 02. I'm fighting as hard as I can. I hope you are doing well. I know it's a struggle no matter what stage we are at.

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Just hang on in there and do what you need to do, even if that's resting when you really need to. As your wife has experience of this disease with her mother it sounds like she is in denial, maybe deep down, she is terrified of the same thing happening to you? All, you can do is keep the channels of communication open between you. Maybe gets some leaflets or a book on COPD which she can choose to read or not? But if you do need to rest then tell her you need to, instead of going out and do the other things when you can. x

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I'm a Newbie COPDer, and was already totally disabled with many more medical issues long before being diagnosed with COPD. One of my main issues is because of my other issues, I'm not able to walk much, or do much of any kind of exercise at all. But I'm still trying to figure out how to keep it from advancing any quicker than it has to. I'm not sure if others experienced what I did the 1st time I used my inhaler, but shortly after I used it, I began coughing up these really hard, round, I guess they were mucus plugs from my lungs, so I'm wondering how many others have experienced this. This weekend was horrible for me as far as my breathing goes, but it seems like it has rained forever here and I suspect the rain is the culprit because I know it sure makes all my other issues worse. Does the rain effect others on here too?

But fortunately for me, the best thing I have going for me is my ex-hubby, but I do refer to him as my hubby. (He's an Ex because of reasons beyond our control, and getting divorced was what worked best for us in the situation we were faced with). He is also disabled, but because of different issues than I have. Plus he is battling lung cancer, and he's also going blind from his diabetes, so he understands that when I say I'm not feeling well and need to go lay down, it's because I'm really feeling like dog snot, and have no choice but to go lay down, and I completely understand when he says the same thing to me. Believe me when I say, there's nothing I'd love better than to be completely well, and be able to take complete care of him and all his needs, but unfortunately that's not the hand any of us here have been dealt, and in order to attempt to be the best/healthiest we can be, and be able to even attempt to be the person we and others want/need us to be, we have to take care of ourselves 1st, and then everybody else 2nd. Luck for us and our relationship that my hubby Gets It, and so do I. Even though we are divorced, we still stick together through sickness and health (but there's a lot more sickness and very little health).

So I'm sure the lack of acknowledgement and understanding your wife is showing you has to be very difficult to handle, but hang in there, and hopefully she will come around. IMO Education and Communication are the best ways of helping her to understand what you are going through, what you're going to be forced to live with for the rest of your life. Also talk about what you need or want from her (be it help, understanding, acknowledgement, or whatever) since you're now battling this disease, and what she wants/needs from you even though you are now battling this disease, and then you 2 together attempt to try to come up with ways on how to get there from where your both currently at.

With her mother dying from COPD it's possible she could be in denial that you have it, or she could be scared knowing what she saw her mom going through, or whatever, but until you 2 sit down and have a long discussion about what the real reasons are, you will continue to have tension between you, and continue to have a lot of unanswered questions. Best of Luck to you and your wife, and to all my COPD Friends.

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