I have started my steroids today as always seem to be breathless in whatever I do, not when I'm resting though. I used to have good days and could achieve what I wanted to do without too much trouble. But just lately it isn't right I'm still taking my Azithromycin every other day. I really do not like to take steroids to often last lot was round Christmas. It's not a chest infection had enough to know by now. Im just worried is this just me with my copd getting worse I was told it was severe copd I have. Have an appointment in April to see my consultant I will talk to him about this. I expect I won't want to hear what he says though.
Sorry I know their are people on here a lot worse than I am just feeling Fed up with myself at the moment.
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patj
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"Hello to you patj.. Big ((hugs)) for you. i know just how your feeling i too started my 6 th steroid course yesterday and like you no infection, and hopefully none to come.. yes it is hard work trying to keep so positive and fit. while also trying to breath. but i'm sure as soon as the better weather starts to arrive. we will also feel much better to..... we need plenty nice fresh air in our lunds pat..you keep positive and keep yourself well wrapped up..Megan.xx"
"Peg!! thank you so much for your lovely letter.... your such a lovely caring lady.. Yes! it can be really tough on you when you don't get a even a short break from these awful exacerbations.,But!! we carry on as best we can.....And trying to take a load of no more notice..... But!! it is good to hear that life is being a bit kind to you Peg.not before time Hey.. you just carry on doing what your doing for it seems to be working..... have a lovely evening Peg and do keep yourself well wrapped up and warm..Megan."
Nice thing about this site: people understand and care, it helps a lot. I remember well from when I struggled and felt like it was the end of the world. It's so very hard to rise above it and not plummet to the depths. Especially when you live alone and people in your sphere just haven't a clue.
Well done for reaching out. I know I rarely can, always feeling I have to do it on my own.
Thank you Megan it is so nice to have your reply it makes you feel you are not the only one in this situation. Sorry to hear you are felling the same. Take care Patj x
" Aww Patj..Thank you for your lovely reply...Yes its sad but so true there seems a lot of us at this moment in time all feeling outta sorts.... i am sure though now that the weather is starting to pick it self up we will be able to follow suit too.....lets all of us hope so...well you take care yourself keep well wrapped up, for although its nice and sunny, its still bitterly cold.....Brrrrr....take care Patj..Megan.xx"
I am in the same boat too. Finished a course of steroids yesterday. Nurse had made me an appointment last week as my oxygen levels have been low. I have a oxomiter which has been showing 83%, to 85%.The doctor she referred me to was a locum as some of our regular GPs were on holiday. My breathing has been the worst ever since diagnosis , I was shocked a few days ago to have a reading of 66% after just filling bird feeders in my lilac tree near the front door. I am keeping an eye on things and am pleased that I have been getting several readings of 90% in the last 24hours. My breathing has improved so its fingers crossed I can start to get out more for some badly needed exercise. Think we all get feeling down and whatwe need is some warm sunshine to give us a boost. Hope you soon feel better too. Joyce
" Hello to you Joyce. i am sorry to read that you too are going through a tough time as seems the most of us here are too....As i just said to Patj..hopefully now the weather is starting to pick up maybe we will too.....Fingers crossed... i have so many jobs need doing in my garden, But! the thought of it is so daunting...... and living alone i feel i have to prioritise things and my garden seems way down on my list of what to do's.. i have started a course of antibiotics today so hopefully along side my steriods i will be as fit as a fiddle...hehehe!.... can but keep positive...You take care yourself too Joyce....and you keep well wrapped up too.....Megan.x"
Thanks Megan . I have been wondering lately if.I may have to eventually go on oxygen and was anxious about it, but seeing recently of all the members comments re how much better they feel on it I am not worried any more. That's the beauty of this club where people are always there to give advise even when feeling under par themselves. X. Joyce
Oh hello all. sadly I'm in the same place. just finished my third session of steroids since 23rd Dec. My oxy levels went low often and scared me. Hopefully fingers crossed this maybe the last for a while.
Let's hope the weather improves along with our health. xxx
" Suzy!!...Big!!!... ((cuddly hugs)) for you....there seems no end to all these none stop infections dont there ... I hate to have to admit this yet alone say in print..... But!! sometimes i wished i'd never gave up smoking....( nearly 12 months now) ...for i never felt this weak.. sick and not in charge my life when i did smoke....( i only ever smoked 5 a day anyways.) ...just a little outta breath was all.... Miles a day walking with both my dogs... Now i am lucky if i can put my socks on by mid day...hehehe don't i sound dramatic.. but its how it is.. But as you say ....Fingers crossed....and lots more sun....keep positive Suzy... xx megan."
I know what you mean I gave up smoking nearly a year ago and I have never been so unfit. It seems I'm worse, the only thing that isn't worse off is my purse.
But I totally know where you are coming from Megan. I would not go back now to smoking I do feel it's for the best totally. X
Oh how I agree Megan, but as patj says I wouldn't go back now because I don't think I would ever be able to kick it again. I have never felt this weak and tired before. I have always recovered quicker and with some energy. Ha Ha know what you mean, sometimes just putting slippers and dressing gown on to get out of bed and I'm shattered. my family were always saying sit down, relax, I was always busy busy. Now I don't think I know what quick is.
yes tomorrow is supposed to be a good weather day. Who knows I might make it for a short walk.
I understand how you feel as i can be just the same, been up since the early hours feeling very breathless and in fear of a chest infection about to start. Sending you a hug and lots of love and hope today will be better for you x
" biker!!... thank you for your much needed hugs....I am sorry to read that your like the rest of us all breathless....and yes!! fearful is the right word. Fearful of yet again another horrible infection.. all you can do my friend is..take the medication. keep drinking plenty of fluids.. keep positive..and don't forget to keep yourself warm..other than that biker...hope for a nice long warm dry summer....Megan.x,"
Thank you to everyone for there lovely comments, so sorry to hear there are others that feel like me. It is nice to know in other ways that this seems to be the norm as well. I'm going to think positive today and tell myself things will improve as we all say roll on the Summer.x
Good Morning Patj, That is miserable for you. My husband suffers with severe COPD and he too has episodes of severe breathlessness for no apparent reason. He has just finished another course of antibiotics and steroids (third this year!) Have you talked to your Doctor about it? I know you say you are seeing the consultant in April, but it might be worth having a chat to the Doctor.
I would also recommend you ring the helpline and ask their advise - the nurses might be able to advise you. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm.
I dont blame you for feeling fed up, it is horrid when you are feeling so breathless. Try to helpline - take good care, lots of love TAD xxx
Thanks Tad but my doctor listens but never does much to help, always says well your seeing your copd consultant in April or whenever my next appt is. That is a load of no help I must say. I will try ringing BLF. Path xx
Blimey I didn't realize so many people are fed up. It's not just me,anyway I'm not known to take steroids as they nearly killed me first taking them ,not used to so much toxins in my body,anyway fed up with suffering with no meds,I took some steroids and it seemed to sort all my problems out ,I could eat again I slept ,I went out ,even walked a bit ,wow .i felt good had energy for once. So I think I will use them to buck me up ,.
Perhaps its the spring or something? I too have had to take far more courses of steroids that I would like I am just thinking I will need another lot - 4th since Christmas! Trouble is they keep me awake at night so I am tired as well as breathless, I didn't realise so many others get to feeling so low that is why this site is
Back in May 2015 I was told by the hospital Consultant that I had end stage emphysema. I joked and said 'Am I on the way out?' Obviously he couldn't tell me anything as they don't know enough about COPD so he just shrugged the question off. I mentioned that I still worked 4 days a week and led some semblance of a normal life. Fortunately I have a 'Blue Badge' so I can park at work etc. Someone on BLF said that she too was diagnosed with 'end stage emphysema 'over 15 years ago and she is still here. That really gave me hope. I don't think you should worry too much about labels. I was initially diagnosed with mild emphysema about 15 years ago. I quite smoking in 1992. So the diagnosis came about 8 years later. I was originally told that it shouldn't get any worse but hey 15 years later after two back to back hospital admissions in December 2014 with a bad chest infection, I have been upgraded to severe COPD and on oxygen 1/2 litre daily 15 hours minimum. But I did make it to my 65th birthday last month. Fortunately I had an appointment at the Brompton Hospital and they are carrying out more tests. What does make me angry however, is that the NHS wait until you are critical before they act. I too get breathless even with the oxygen. Main thing is to exercise, anything as long as you are moving. Just hang on in there and hopefully the Consultant will have good news!
patj, I think you anticipate too much about seeing your consultant. But have you been referred to a pulmonary nurse. she would know what happens to you and would be less busy than the consultant. In fact, I phone my pulmonary nurse whenever I feel blah! She visits me at home if need be. Thanks to her, I didn't go to hospital with my chest infections this winter. Have yourself referred.
Hope you have help soon. Try to do a little of what makes you happy.Mic
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Hi all, just joined community and wonder if anyone has had, or knows anything about, pulmonary rehabilitation as doc has recommended it.
feeling down
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