Hi 🤗, as a Bronchiestasis sufferer on all usual medications, rescue pack antibiotics etc, I am just wondering if anyone else out there has days when they just feel really under the weather, not because of infection, but just generally not right, as I seem to be having lots of days like this where I feel completely washed out etc.
I would be grateful for any feedback.😊
I have COPD and some days not very often though I feel like that. Have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx
Hi Samye, I have COPD but no bronchiectasis. I too often feel generally 'off', more breathless, tired and with no appetite. Have been feeling like that for a few weeks now but don't feel that starting my emergency pack is warranted. Like you, I can't shake it off either. Sometimes it's hard to know if it's a worsening of one's lung disease or the effects of the prolonged lockdowns and restrictions. I hope that you pick up a bit soon. Carole xx
I too have off days, last Thursday for example. I have bronchiectasis, copd, asthma and emphysema. Not poorly enough to need rescue pack but utterly fatigued and usual symptoms highly manignified. I just moan but accept it as part of the disease .
I have bronchiectasis and asthma and know just what you mean. Over the years I have learned not to fret about it and have things to do that do not need much energy. I also have to pace myself every day, alternating things that use more and less energy. This seems to help. My normal pattern is 3-4 exacerbations a year but amazingly none since the pandemic started. It will still be great to get out and about though.
Yes, it's really tough at times.u have had infections too,which take time to shake off
I have been exactly like you for the past few weeks finally rang my pulmonary team on friday who have suggested I take my rescue pack of prednisolone only for 7 days and they are sending a nurse out to me this week but I cannot raise any enthusiasm to do much at all. Just so very tired and out of breath so easily. Hope you get sorted soon.
Hi samye you are not alone,I had a really bad day yesterday accelerated by the strong wind (not mine I hasten to add ) the one outside and as we are allowed to meet in the garden with family it's so difficult with bronchiectasis and airborne pollen etc.pain between shoulders ,coughing and feeling really tired and generally not the usual me.so I think it is also something bronchiectasis sufferers have to cope with,I hope you feel better soon.
Hi Samye, I too have good days and bad days. (I have bronchiectasis). One day I'm reasonably energetic. The next I wake up feeling all right, but by late morning I'm wacked and spend most of the rest of the day asleep. It doesn't help that I've got a family to feed, so have to try to save enough energy for cooking, even if its only shoving ready meals in the oven. You have my sympathy, not surprisingly.😂😂😬🙃
I have bronchiectasis along with rheumatoid arthritis and both come with fatigue. There are days when I suffer brain fog which really doesn't help. I have found that on these days when I am really unable to do much I dont push myself too much and have a day off. I do take supplements to help. Just set your own pace x
I have COPD, asthma and bronchiectasis and I'm never quite sure which bit is to blame for how I feel!
I was diagnosed with bronchiectasis six or seven years ago following recurring chest infections over many months. I was also suffering with attacks of severe vertigo (due to Menieres Disease) which went on for two or three years and I felt generally so rough that I got very depressed (although I didn't realise it then and had no treatment for it).
All my 'get up and go' got up and went! Thankfully, the Menieres has moved on to a different stage and I am no longer experiencing the long periods of sickness and vomiting that come with the vertigo but I continued to have chest infections three times a year, or more. During that period of time, I had no energy or enthusiasm to do anything. All my hobbies got left. I didn't want to socialise. I couldn't walk far or do much. I had a lot of what I called 'do nothing' days. It was rotten!
My peak flow was between 180 - 220 and I became increasingly breathless. Then last July, I saw my GP about something else and while I was there I asked her to listen to my chest. She was horrified! I was told to start the antibiotics and prednisolone immediately. The infection recurred so I had two lots of amoxycillin, then a few weeks later two weeks of doxycycline then finally one week of Clarithromycin. Finally, the chest infection went!
I now feel better than I have done for over six years. My peak flow is consistently between 230 and 260. I have energy again. All those 'do nothing' days are a distant memory and I am no longer depressed. I can only put it down to having Clarithromycin for the first time in my life which finally seemed to get rid of whatever bug was resistant to the other antibiotics I have had. My phlegm has been either clear of pure white ever since taking it, I still cough - but much less - and I can bend and stretch and dig the garden (with a fork - not a spade) which my husband is amazed at. I can walk again and do all my own housework. It's been like a miracle and I'm only hoping it will last.
I hope I haven't bored you with my story, but I now know what it feels like to be well (ish!) again and I think if I had been given the right antibiotic earlier, I may not have been so unwell for so long. It may just be a lucky coincidence, of course.
So, if your down days are becoming more frequent, especially if this coincides with an increase or change in colour of your phlegm, it may be that you have a low grade infection that doesn't feel bad enough for you to think about taking the meds but could be sapping your energy. I have had quite a few samples tested over the years but clearly this latest little gem was hiding deep down out of reach!
Meanwhile, I would say, do what you can on the days you feel like it and don't feel guilty about writing off the other days. If you need to rest, then do. Listen to your body and go with the flow, but don't be afraid to seek medical help if it goes on too long. xx Moy
Yes I may have what you have aswell as copd I have widening of the airways isn’t the lung function test so hard and long now.
Hi..I too have Bronchiectasis but increasingly more days 'off' as you put it. Quite often breathless, though they are looking into heart for that.My consultant says sometimes may be useful to give yourself a boost with antibiotics though I tend to hold out as long as possible. 🤔
I have bronchietasis and asthma and feel exactly the same. Some days I feel like I'm coming down with something, chesty and out of sorts, it can either turn into a chest infection or just go away. I feel like this most of the time.
My consultant gave my a nebulizer last year, just to use saline in, it has helped me immensely in helping me keep my lungs clear which has helped me feel better. I also make sure I do some form of exercise every day which helps.
I wish you well x
Hi Samye. I have asthma bronchiectasis and ulcerative colitis and I have days when I just feel washed out but generally I am fine and go for daily walks of at least 10000 steps and look after grandchildren a few days. Take care. See you’re GP I’d you’re worried and get your chest checked. XAnita
Hi Samye, I also have Bronchiectasis & Asthma. I have days when I feel extremely tired & just off. The last ten weeks I have had flair ups had five weeks of antibiotics & a week of steroids. I’m still very wheezy, coughing up phlegm & extremely tired.
I do think lockdown has had an effect, months & months in shielding. Take care your definitely not alone, much love 💕
Yes Samye. I have asthma too and often don't know what is causing total lethargy. And I struggle a lot with wipe-out. Total bummer! 🙄😊
Hi Samye,
How long have you had bronchiectasis? I've had it over 20 years, probably longer than that but was never diagnosed, was alway getting fobbed off with the same antibiotics by my then GP!
I really do think that you have to make the best of days when you're well.
The thing I hate, is I can't make plans too long in advance and I have lost many friends because of constant let downs.
On a general, it can take months for infections to go away for me sometimes, but it's always been about finding the right antibiotic. I never spring out of bed anymore, it makes me wheezy, fatigued, forgetful, short with people and can really slow me down so much. It can sometimes interfere with my family life, I have two young children and particularly on a bad day I have very little energy left for them which makes me feel guilty. I also work a four day week. Have had such a healthy year since the pandemic, working at home and then the children bought a small cold home from school and bang, its like a chain reaction and goes to my chest and haven't been able to get rid of it after two different antibiotics later. Still not feeling great, feeling cold, not quite right, aching etc so perhaps the last set antibiotics didn't work so here we go again. It's the most frustrating condition to live with, for me anyway.
I hope you know you are not alone. We all have bad days and hope you have a good support network, particularly if the rules start to relax. Take care😊
Hi Samye,I have the same problems - asthma, COPD, and brochiectasis. I agree somedays I can work in the garden for a couple of hours. Next day after a bad night when I need to sleep in a chair
downstairs I could sleep for the rest of that day. No energy or desire to do anything.
But I know the next day could be a lot better and that is what I can only hope for.
Good luck Samye; the next day or week could be better.
Copd sufferer.
Bronchiestasis - and blood
