After a couple post, I’m still pretty new here. I “stalked” the sight a while before I got courage to join and do my first post. I admit I was nervous about the whole thing. I wondered if I did it right, or if I misspelled anything or… the list of what ifs was long. After so many replies welcoming me to your sight, I felt like I was accepted; I was a part of something. I continue to “stalk” LOL, but often when I have something on my mind, someone ask about and it is replied to. I have my answer without having to ask personally. I guess that’s the lazy way? This post is a confession; a secret confession actually. I’ve been diagnosed with copd, polycythemia vera, pulmonary hypertension, and congestive heart failure. My health just seemed to go down quickly. One day I was working full time, spending time with my 5 grown children and grandchildren; (11) and it seems the next day I was sick. Each day I seemed to go down more. I was diagnosed with everything from diabetes to hypertension. When I final did hit rock bottom and spent 7 days on the hospital, they found the polycythemia vera and pulmonary hypertension, but I’m told the damage to my heart and lungs is already done. The damage to my lungs is ilreserveable. I’m supposed to be on oxygen 24/7. It’s been 10 months now and I take short walks without oxygen, but most of the time I become short of breath doing everyday things (taking a shower, dressing, light house work etc.) I am lonely. I haven’t received a visitor in almost a year. My children are busy with their own lives and I don’t see a lot of them. I become so frustrated about this shortness of breath and not being able to do many things, I want to scream. Truly, I just feel like raising my arms and screaming until there is nothing left. I feel like breaking something; just smashing things! I feel like crying. I feel sad. At time I feel beaten. Oh I know they’re surely many people worse than me, and in the mist of all my self-pity I do find time to be thankful. Well, this is my confession. I know you’re probably tired of reading this bla,bla,bla. But I believe I feel better now that I have this off my chest. I wish I had someone to tell this to, then I would not have had to bore you with it, but sadly I don’t. Thanks so much for being here for people like me.
confession is good for the soul, Isn'... - Lung Conditions C...
confession is good for the soul, Isn't is?
Hi this is why we are here to listen and care it is so sad you haven't had a visitor for so long
I also live on my own and have lots of health problems like you so I know how scary it can be not one person on this sight is bothered about spelling mistakes or any other mistake for that matter . You take care
Dorothy xx
Hi, who cares about spellings, punctuation or good grammar here, no one but a nitpicker! Bla Bla bla away. So glad you feel better. Try a scream out loud might help your breathing. I often feel like you. We do seem to have good days and bad days.
Hi rmfields, loneliness is horrid by it's self but at the same time u could have 10 visitors that still won't understand how u feel, least on here to a degree health wise we are all in the same boat, I have lots of family round me but still cry and get down ( as I stated in a post I wrote earlier ). Whenever u feel like that scream, shout then come on here
Everyone always pick me up with the kind, friendly supportive and caring replies and advice they all give. Take care and best wishes. Xxxx
Hi Sonia1972.I'm so glad I found all of you. you are right about people not understanding and most of the time DON'T WANT TO HEAR ABOUT IT, so I don't say much. When people ask "how are you?" I always say good because I often feel that's what they want to hear.
I know , I play down my illness sometimes as I don't want to sound like a hypercondriact with all my ailments , but if I tell people I'm not good they seem to say " never mind U'll be fine " can't win really that's why it's great on here we are all in the same boat with one illness or another. I'm sort of addicted now , always checking how everyone is , what new posts come on , even if I don't reply or post, just reading the advice, tips, support for each other makes me feel better everyday. Keep in touch. Xxx
Hi rmfields, there is a great bunch of folk on here all willing to listen so please don't be lonely.
hi rmfields,,,, the leest of your worys is speling lol
nobody is worse than me,
but seriously i am in a similar position as yourself, same health probs,end stage copd,and feel it now, live alone,in a residential mobile home, dont get many visitors, cant go out much, if even at anyrtime,, ,, but for a start you have put this post on and felt better, thats fantastic, now go on to make more, nobody judges you on here, all are here to help,,, god knows how they have put up with me lol,, but they have, and i have had some great advice, life changing advice from the kind folks on this forum,
just to diverse a wee bitty, i married a divorcee, reared up 5 kids that were not my own, got divorced when they were old enough to look after themselves,and dont even know where they are now [im an o,a,p now], in a nut shell , i was used,,,,, however i did go on to have a lovely daughter,by another woman [bl''dy ex wifes cousin lol],, the oldest of the 5 will be about 50 odd now,but my own daughter is 30,, shes lovely, i love her a lot, but hardly see her, although she does keep in touch,, [at times] , i think they are far too busy with their own lives.but such is life.
you say you feel "beaten at times" ah most of us feel like that at times,,never be beaten, try hobbies,go on the humour page, anything at all, but we must try our best, never to be beaten. hard as it is at times,
you havent bored anyone, get anything off your chest, have a tantrum on the forum if you like, as long as it makes you feel better,, i feel better for getting this off my chest lol,, you stick around my friend, you wil find this forum will help a lot,,,,kindest thoughts,,,jimmy
Thank you Jimmy. I have raised 5 wonderful children. I don't see them as much as I'd like, but like you said "such is life." I'm better now. Just needed to share I suppose. We won't talk about spelling except to say I'm "spelling challenged," but I try.
Thank you Jimmy. I have raised 5 wonderful children. I don't see them as much as I'd like, but like you said "such is life." I'm better now. Just needed to share I suppose. We won't talk about spelling except to say I'm "spelling challenged," but I try.
Welcome rmfields. It can all be a bit much when you have so many health problems and you are so right when you say that people often just want you to say you are fine when they ask after you. Maybe you could say to your children how lovely it would be to see them and the kids when they can spare the time. Everyone is so busy these days but perhaps they could visit from time to time and have a catch up. Do keep posting and you will find some wonderful people on here, as you have already, only willing to help in any way possible.
Take care and thinking of you. xxxxxxxxxxxx
Hello and welcome to the site! My husband suffers with severe Copd and to all the world looks like he is coping but last night as he struggled to get into bed he looked beaten - he confessed he had had enough of illness. And my confession - I have too and I'm not ill!! so use this site to confess it lets it all out!
Can you find out if there is a breath easy group in your area - that might be good for you just to meet others. Have you thought about hobbies? Take good care of yourself xxxx
Thank you TADAW, with all you have on you, you took time to try and help me feel better. I am touched by the kind people on this sight.
Hi rmfields
Your post has only just got through to me, mine are always a few hours later. Anyway, a warm welcome to you. Why worry about spelling, punctuation, there are more important things in life. I'm so sorry you're going through this on your own. Have you phoned Age UK? sometimes they have a network of people who will visit. You come on this forum any time of the day or night, you will never find a group so supportive, and there is always someone who will be able to answer a question, on this forum you will never be on your own. Take care. xxxx
Well Rmfields, that is what the site is about letting your feelings out, And you are right we all feel that way some days. Poor health can be very frustrating. You say you don't have visitors I understand this as I live alone with grown up family flown as they say. Age Uk can often put you in touch with groups who offer home visits and they have a befriending service themselves, our local council does coffee mornings and collect housebound people and take them there. I am registered with ring & ride who collect you at the door and bring you back for a small fee just like taxis. Hope you feel much better now for the chat take care xx
Have you looked up on the web to see if there is a Breathe Easy group near you ?
You can check in your area with this link.
Hi Rmfields, Sorry for not replying sooner, I don't have a sleep pattern, so sometimes late posting. You are so welcome on here, and I am glad you managed to get it off your chest and post. Don't worry about spelling, sometimes I get it right other times I don't. I'm sorry you do not get visitors, If I lived close I would visit for a cup of tea, and a good old chat. You need to find out if there are any groups, in your area Breatheasy or community groups. I hope you do find something. It is frustrating, not being able to do jobs, that you used to do. And not having anyone there to lean on must be devastating, I have got my hubby and son at home, I do not know how I would manage if I didn't. I am sure everyone on here, has not been bored or tired by your post. I am glad you found the courage to say how you feel and post it.
Keep posting, Sending hugs, Nannyb xxx
Good morning just seeing how u are today, and letting u know , here if u get bored and want a chat. Xxx
Hi everybody, in my opinion this particular "string" has a lot of anger and frustration in some of the posts about condition. I have learnt to direct my anger at my condition into positive thinking and not letting my condition take over me. My favorite thought is " I have COPD but COPD does not have me" . There is a comment somewhere in above post that says " end stage COPD" sorry but i do not have a sell by date on my life like a pack of frozen peas in the freezer. No we cannot cure ourselves but we can be positive and fight for the right to live. Just for info I am 70 yrs young with stage IV COPD with FEV19% at last test and no I do not use oxygen. Cheers Dave from the LoS.
yorkie70, you say you don't use oxygen, is that by choice or do you not need it? I wonder at stage IV COPD what your 02 sat is? Sorry I'm still somewhat hung up on the numbers.
Hi rmfields, I do not require oxygen at the moment but no doubt I will at sometime in the future. I have had COPD for many years. My sats at rest are 93 / 95 % during walking at decent pace will drop to 90 %, on my exercise bike I keep going until it drops to 88 % then I stop and recover then continue. My bike is set on No. 3 and I stay at +/_ 10 kph and I go for 3 to 5 mins. I can walk for a long time I have never checked to see how far I can go but I do walk for 30 mins around my house and garden regular. I have 3 oxymeters 2 regular ones and 1 that records and I have software to produce charts. Occasionally I do a sleep test to keep a check on my sleep sats. This meter cost me about GBP150. Hope this helps. Cheers Dave from the LoS. Breath easy exercise often.
PS I was going to attach a PDF sleep chart but I cannot do it.
That is why there are sites like this and users on them Loneliness is something no-one needs and we are here for you. Vent away no one minds and we all need to do it.
Big hugs
xxx
Sooo glad you found the courage to : off load : You certainly have something to cry about, yes it,s the suddeness of the illness that gets you and coming to terms with it is hard. I have four Daughters and like you they are all very busy with their own lives. (. they don,t even live hear. ). We all try to put a brave face on.... We have to, if it,s ever to much for you phone the Semaritains, they are wonderfull... Luv and Hugs xx
Hi rmfields and welcome. I so hope you are feeling a little bit brighter now. I know from experience how us sick people don't want to be a burden on anyone. We're also too proud to ask for help and that sometimes is interpreted by friends and family as we're coping. I lost my partner and was diagnosed with COPD within an 8 week period at the end of 2011.
I also found out who my friends really were and was especially shocked to be dropped like a hot cake by the one I would have sworn I could have relied on.
Looking back, I realise that being let down like that, had also contributed to the following mental and physical decline. ( I have other health problems too.) Altogether, I truly felt my heart was broken.
I couldn't eat, got terribly weak and lost loads of weight. I was in agony with fibro pain, couldn't stop smoking and missed my lovely partner. I felt I couldn't carry on, whilst still trying to hide what I was going through from my family.
I eventually had a breakdown last April and turned to my cousin for help. She was absolutely brilliant and still is. I also found this wonderful site and the great support they gave me.
I'm not as breathless as you, so I can't claim to know how that feels - yet. but, I do understand the frustration at not being able to do what you once found easy. You explained how it makes us feel so perfectly.
Keep coming on here and you'll soon feel less lonely. I do. It's my little secret haven that I run to when I feel overwhelmed or anxious.
Take care
Casper x
Pulmonary Hypertension
Low oxygen levels 
Removed from Transplant
Mycophenolate
