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Post by John on Nov 24, 2016 7:28:49 GMT -5
Sick lungs don’t show!
Sick lungs don’t show!
I may not look sick, but….
I have Chronic Obstructive Pulmonary Disease (C.O.P.D.)
What is C.O.P.D.? It includes such illnesses as emphysema, chronic
bronchitis, and sometimes asthma
It is primarily characterized by extreme shortness of breath
Living with C.O.P.D. means many things…
Living with C.O.P.D. can mean having to avoid:
* all kinds of strong odors, smoke, flowers, perfumes, cleaning supplies,
paints, solvents, vehicle exhaust, shaving lotion, bath powders, incense,
* excess humidity
* temperature extremes or wind, crowds, molds, and dusty places
because they make me short of breath
Physically……
Living with C.O.P.D. can mean:
* having difficulty walking up stairs or inclines
* not walking very far
* being unable to rush or “being rushed”
* tiring easily- especially if things last too long
* being unable to tolerate tight clothing
* inability to talk for any length of time
Socially…..
Living with C.O.P.D. can mean:
* coughing in public which attracts attention and embarrasses me
* having to use or wear devices or equipment, or take medication
which invites public comment (oxygen, cold weather masks, inhalers)
* being concerned (often excessively) about contact with cold or flu germs
* having my friends make short, pleasant, smoke-less visits
Emotionally….
Living with C.O.P.D. can mean:
* crying easily, angering easily, become frustrated and impatient because I can’t do the things I used to do
* feeling resentful when others tell me, “you don’t LOOK sick”
* being panicky and tense
* being dependent and demanding because it’s frightening when you
can’t breathe
C.O.P.D. effects my family too!
They are effected by:
* adapting to my various physical, emotional, social and environmental
needs and limitations
* leaving many functions earlier than they wish because of me or never
even getting there
* having to check out all of the details in advance and getting places
early
* having to remain calm and reassuring at all times
REMEMBER………….
I may not look sick……….. but….. SICK LUNGS DON’T SHOW!!!!!!!!!!
credits;copied from COPD CANADA
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Post by ozboy on Nov 24, 2016 8:28:16 GMT -5
Thanks John.......It is sad that sometimes those closest to us have the least empathy towards our condition....The only ones that we truly identify with is our fellow COPD friends......Even the Medical Profession has no real idea what we feel inside....
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Post by sharon on Nov 24, 2016 9:43:51 GMT -5
People just dont get it. The trouble we have.
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Post by lavishgail on Nov 24, 2016 11:35:32 GMT -5
Hits right on the spot. Hard to get ready, takes me a long time.
Car fumes ugh.
Cigarettes ugh.
Dog hair and dust.
Just to name a couple. Oh humid weather, hot showers, my goodness. Going places period. UGH.
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Post by lavishgail on Nov 25, 2016 13:16:03 GMT -5
When I have to get ready to say go to the doctors, I have to start 3 hours ahead. So if they cannot give me a later appointment like 11:00 in the am I'm up like 6 to be there for say 9:00. I have to bathe, have a cup of coffee, some toast or something to eat. Then take my meds which consists of a bucket full. Then getting dressed oh my.
Rest, rest, rest. Then have to get bottle ready for the day, usually do that the day be4. Always have 4 or 5 bottles in the car, also one in The truck I'm going to use for the day, bc my car is in the garage to be fixed..omg, all the while I'm trying to breath bc anexity is setting in knowing all this stuff I have to do, my face gets beat red I can't breath, I am besides myself!
People don't realize what we go through just to go to the doctors! That's why I stay home and lot. It's harder and harder for me. Then I say to myself, is this my emphysema, or anexity? IDK? We will see, the doctor still never call me about the night monitoring on my breathing? I wonder why? Should I call? Or obviously it was fine? Idk, crazy. But the doctors said they couldn't find anything wrong with me now that everything healed? So strange. That's great if I could feel great? But I don't. So we will see?
Maybe it is a Lupus thing and only really bad when in Lupus flare up? Idk, keep you informed.
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Post by jarca on Nov 25, 2016 19:57:29 GMT -5
I need to read these things because I always think it's just me, or am I being a whimp etc etc.
especially the emotional stuff.
I get so frustrated, tongue tied, repeat myself, lose words & can't finish sentences= I think that is the hardest if feeling like i'm losing my mind sometimes more than my body.
Gail; I can relate to staying home more & more.
for me by the time I take a shower & get dressed i'm too worn out to go anywhere.
When i have to go to the dr or anywhere; I take my bath & do everything the day before as I can't do "both"
I broke a tooth & i'm so worried about going to the dentist. that I will need to go home before he gets done.
I have 4 appointments next week (dentist, dr, financial advisor & HEAT assistance)---my Dr is the only one i'm not worried about as he is sooooo good & patient with me.
Dentist is worrying me the most.
Yesterday I was "so proud" that i went to family thanksgiving, but much of my getting ready I did the day before & then I told family i would drive myself as I knew i would be lucky to last an hour.
Then to start choking on a mucus plug in the middle of dinner was so embarrassing! I couldn't "run" to bathroom as i was blocked in & of course had 02 tank with just a short hose to gather up If i wanted to move.
My family is so good & try to understand, but i am so glad today is just me home alone again & i'm teary & having such a hard day.
it's so hard to want to be with loved ones, know they try their hardest to be understanding, but every year face how i can do less.
darn, now i'm blubbering, but this hit so close to home for me today
so glad i have others here that understand
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Post by lavishgail on Nov 25, 2016 22:08:33 GMT -5
I'm so sorry jarca, I love you! And I understand. It really sucks. And it makes me feel all alone. Thank God for this forum and you and everyone else!!
Take care and feel better, knowing I'm saying a prayer for you!
Love you sweetie.
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Post by jarca on Nov 26, 2016 20:55:08 GMT -5
feeling emotionally better today.....
I think I got "over tired" like a kid & then i get teary & emotional= thank you for the prayer, Gail.
It always helps to know someone cares & also understands.
I try not to let this disease mess with my head, but sometimes it can get me when i least expect it!
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Post by joany on Nov 27, 2016 13:57:42 GMT -5
I get so frustrated, tongue tied, repeat myself, lose words & can't finish sentences= I think that is the hardest if feeling like i'm losing my mind sometimes more than my body. Gail; I can relate to staying home more & more. for me by the time I take a shower & get dressed i'm too worn out to go anywhere. When i have to go to the dr or anywhere; I take my bath & do everything the day before as I can't do "both" Ditto! Ditto! Ditto! I finally located a counsellor who I'm hoping will give me some mental relief. I too was feeling as if I was losing it - too many dead-ends. I needed someone else to listen to reasons, excuses, costs, etc for me. So far I''ve had two appointments with the counsellor and feel a bit better. This week will be a "doozy" though with a range of appointments. Oh well...Just know we're in this together. See ya later... |
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Post by gerald on Nov 27, 2016 17:55:22 GMT -5
I find I end up going out a lot more on my own.
If I am with people I try, even without thinking, to keep up with them and it always ends up in difficulty.
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Post by jarca on Nov 27, 2016 20:25:46 GMT -5
That is how I feel about my friends here on the board. "We're in this together" as I don't think anyone can truly understand who hasn't "lived" this.
Joany,
I put off counseling because I wonder if they can relate & actually help or if I would get frustrated that they would try to "tell me what to do" when they don't understand.
However, It would be nice just to have someone to talk to & blow off some frustrations.
I'd love to hear what you think of counseling after you've done it for awhile ((((HUG))).
I use money as an excuse not to try "professional counseling" too. The last time I called & tried to see someone, no one in my town will take medicare so i'd have to pay out of pocket.
Gerald, I can sure relate to finding yourself trying to keep up too.
Even though my family knows i need to walk slow & they slow down for me I find myself unconsciously speeding up to try & keep up the pace. and i find that (my son with long legs) try to slow down for me, but as i speed up then he speeds up, then i speed up...until i'm gasping for air; like i said i think it is unconscious on both our parts, but i too, find going by myself places easier.
I swore I would not become an "isolated recluse" but as this disease progresses, I find that it is easier to stay home rather than "collapse" somewhere with SOB.
(David; I marvel at how you keep going out, even with the bad experiences you have had lately)= each time i have a "bad experience" an unconscious part takes over & i find i "protect" myself from that situation by stopping doing it, or doing it alone, or finding another way to do it.
Question to all= I am single so it is easy to pick when i rest or what i do (altho then there is that aloneness that counters the easy part) ----I wonder if people with spouses find it's easier or harder to adjust to your health when you have to live with a healthy person?
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Post by lavishgail on Nov 27, 2016 23:16:51 GMT -5
I will answer this as best as I can and I hope you will understand, Bob and I have almost separate lives. Idk y? We do everything separate..I feel very lonely, and like a single women. I stay home more and more. He does ask me to do stuff, but by the time I can I'm too tired. He helps me the best he can, but is never here with work and all. When plow season is here like now, sometimes he is gone over 24 hours. You have to be pretty strong to live the way I do. Then he sleeps. I don't see him for a couple of days . Starting from when we first got together, he worked 12 hours a night, he left at 2:30 in the afternoon and didn't get home till 3:00 in the am. I saw him about 2 hours a day. It works for us and I have no complaints. I've always been this way so it's normal for me. Lonely yes, but I stay busy! People that see me a lot say at the market never knew I was married till one day they saw us together, then they would be shocked?  . Or the coffee shop in town, my husband cuts their grass and plows and I go their quite often, they still owe Bob for a year and do not know I'm his wife! Terrible. . Oh well it's hard for us all. One way or another. Gail |
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Post by lavishgail on Nov 27, 2016 23:23:08 GMT -5
Ps. I forgot what I was answering? Hahaha. I get panic attacks all the time, I'm on meds for it so that helps me, if I feel closed in i run for it , not run but you know, . They say face you're fears yeah okay, and faint bc I can't breath! I do what I can and rest the other part of the day. It's very hard, I have psoriatic Arthritis, thats one immune disease, and S.L.E systematic Lupus disease, thats 2 diseases and emphysema lung disease, 3 diseases, not much fun of anything. But I just plug along best I can, and live in denial, . How's that? |
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Post by ozboy on Nov 28, 2016 6:35:15 GMT -5
I find it very hard....Besides the Cultural differences that is inbred, i find a Lack of Empathy or Wanting to Learn about or in Complete Denial.....So we tend to spend more time apart emotionally....I guess from my wife's point of view it is very hard for her as i can no longer go to parties we get invited to or just eat when she cooks dinner....Hard to explain but that is where it is challenging to live with this disease.......i hate hearing ''it's ok...we will do it when you get better''....i know she means well but at the same time i get frustrated she does not really realise what will happen if i die and she has to fend for herself n Snowy.....although i have planned some sort of security when that happens but whether she can handle it because she seems to not take it seriously...... Ok off my chest re jarca's question.......  |
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Post by joany on Nov 28, 2016 9:09:51 GMT -5
I'll have to return later - too heavy. Need to throw some clothes in the washer while I'm thinking on this. I think I'm doing okay, but my dear sister is visiting for the recent holiday to remind me that I'm not doing okay. (We're just soooooooooo different beginning with the rope that went across our bedroom mucho years ago.)
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Post by David on Nov 28, 2016 20:39:02 GMT -5
I am single and I love it. I can socialize away from the house or on line. I would hate to have to entertain a wife. I am not good at it. I have been married twice. I have been single now for almost 20 years.
It's best for me to have girl friends and better for them too 
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Post by jarca on Dec 2, 2016 21:35:46 GMT -5
interesting answers.
David, I like being single too. i can do & rest when I want, but there is that "alone" factor. (i'm lucky i have never "needed" someone to entertain me & i guess i chose single life because married life wasn't fullfilling (it was actually a pain in the ass) to me. (i've been single for about 18 or so years. I'm rather used to it.
i'm very open & honest with my health & not afraid of when my time comes or to talk about it openly. (some need to talk, some don't)
I get frustrated when I am trying to take care of business, like today, when i was telling my financial planner how I needed some investments to be & he'd say, Oh you're young you have lots of time....this is important that my affairs are in order when i die & i don't need someone that cant handle it telling me how to invest!!! I left there so angry & frustrated. i felt kind of insulted, like i was a kid that was making up stories to get attention.
I remember when dad was told he had 6 months or less to live. He asked people to come over & would give them things while he was still able to. He asked my mom to take a japanese doll she had and she said, "why, you're not going anywhere" and i saw him just look at his lap & mutter if that's what you need to think. then once she left he looked at me & said, make sure mom gets the doll.
another time with dad;
his sister insisted on coming to see him for his birthday (he was 1 week before death & really didn't want "company" but i talked him into it because "his sister" needed to see him). She brought a card & cake, but also a very expensive gift that she had family all pitch in on, including a low income senior aunt of his.....WOW! i've never seen my dad lose his cool, but he was MAD! He told his sister if she wanted to live in a fantasy world she could but she was to return that gift & give the money back to people especially my elderly aunt!
Today, i think i understand that was an insult to him? (i think)
aw family. god love them & that letter does cover so many things I wish everyone could read & understand it in my family.
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Post by David on Dec 2, 2016 23:37:32 GMT -5
Jarca, my Mom was the same way. When she was told she had 3 to 6 months to live she started giving people stuff that she wanted them to have. She lived 2 months but she got her house in order.
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Post by joany on Dec 3, 2016 9:39:36 GMT -5
I've always been a low-key person so it's like a "whatever" personality. No drama. I'm 79 with very few requirements. I was probably 79 many years ago. Primarily, I just don't want my decline to be a financial drain on my son's or his family's life. I also hope I can pay for a certified caretaker when needed. (I've had lots of discussions about this decision with friends. For me, there's no way a relative of mine should be burdened by me.)
I hope my care will be covered by whatever monies I've put aside. I have a living trust which I must update and certify. Otherwise I just have stuff - most of which no one else wants.
Not too long ago I was concerned about keeping my house cleaning up to date, just in case. Changed my mind i.e. I never heard anyone say at a funeral service "...you know her place was so dirty"
I need to feed my dog....
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Post by barb7330 on Dec 3, 2016 21:35:00 GMT -5
Well Joany you and I are the same age....I have downsized to a seniors apt and my house is up for sale...I hope I never have to go into an assisted living home but if I do I think I will be able to pay for it. Kids just won't get as much of an inheritance and there is 5 of them and also 5 step children....Not getting to much for sure...If I was in better health I'd travel a bit but that's not happening...Travel from apt. to grocery store.... . Yes and I have lots of stuff too and kids don't want it so they can figure out what to do with it after I'm gone.... I need to take dog out for last time for the night.  |
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. Or the coffee shop in town, my husband cuts their grass and plows and I go their quite often, they still owe Bob for a year and do not know I'm his wife! Terrible. 
