Understanding bronchiectasis

[Mellypad]

Living with mild bronchiectasis and asthma, but dont understand how I am so tired all the time. Was at an event last night, very little alcohol, but was busy night organising and talking and absolutely exhausted all day today. And body totally useless. Does this happen anyone else. On strongest medication they will give me, but still find life exhausting. Do try and limit what I do on a weekly basis, any one else find it a struggle.

[Hidden]

Hi Mellypad,

I have had bronch since I was 3 and am now 68 so I can say with confidence that yes, that is the nature of the beast. I don’t stop myself doing anything but I have learned to pace myself. If I am having a busy day or late night I plan not to do anything too demanding, energetic or stressful the next day. I can throw myself into something full pelt for hours but the next day I am wiped out. I managed to walk all the way down to Petra and back ( bit by bit) and I was totally elated but I had room service in my cabin that night and sat on the deck reading for most of the next day. I don’t get stressed about it because I have never known any different. The very bronch expert consultant whom I had for 30 years used to say that bronchs are tough heroes because we function continually at what ‘well’ people would call ‘one degree under’ but we just get on with it. Do your lung emptying absolutely every day, keep an eye out for an exacerbation starting and take the abs at the first sign and Be Kind To Yourself. You will be fine.x

[shouty in reply to Hidden]

thanks for that, recently diagnosed too and get really tired but your posts encourage me to battle on

[Mellypad in reply to Hidden]

Thanks for that. Yes at 42 it's very frustrating and no one can see how awful i feel and the pain I'm in at times cause i always look well. Haven't been told to empty my lungs, just given medication, bronchiectasis is only mild. Some days climbing the stairs are just impossible, and doctors don't seem to even understand that. I think we struggle on a daily basis and no one reckonises that. I think asthma and lungs conditions are over looked and that needs to change.

[Hidden in reply to Mellypad]

All bronchs are different but most of us collect mucus to a greater or lesser degree in the damaged pockets and airways of our lungs. This is where the bacteria which cause exacerbations like to breed. So it is very important that we get rid it every day. There are various methods for loosening it and getting it out. Even if you are only conscious of having a little bit annoying you it is better to get rid of it.

[notmoreABX in reply to Mellypad]

Hi Mellypad, I feel almost moved to tears reading your words. I also have mild bronchiectasis and asthma and feel that I am always moaning because a busy day then wipes me out. You feel like you are making it up, so relieved to hear that someone else feels the same (although wouldn't wish it on anyone). Achy legs, exhaustion, etc but as you say, we look well. saying that you feel rubbish doesn't seem to count because I feel that I say it so often. But I do love the excuse to ride my bike (needing the exercise) how wonderful with autumn leaves and sunshine and then curled up on the sofa watching Netflix. GP hasn't really understood - feel like a nuisance patient, but had a small breakthrough this week with a GP who asked me to come back so they could really try and work out why I feel so exhausted. I am 52, fit and very healthy BMI.

[Mellypad in reply to notmoreABX]

Thank you for reply, i have given up with my doctor. I am struggling with achy legs at the moment so trying magnesium supplements to see if that helps. I used to be very fit snd was spinning, kayaking and walking, but always with ending up in bed the next day. Now I try and balance things so i stay fairly healthy. Its good yo know someone is going through the samr thing, and can understand you. Love this forum. Im here if you fancy letting off steam anytime.

[veg58]

Hi, I have bronchiectasis and can relate to what you say. My specialist told me that the chronic low grade infection in the airways is very draining in that the body is having to use more resources to keep it at bay. It makes sense to me. However I do find that the energy levels fluctuate a lot so hopefully you will have lots of good days!

[bwp91 in reply to veg58]

Absolutely agree. I’ve had bronch since I was 3 (I’m now 75) and am just used to pushing myself on whatever unless I’ve a bad infection. And even then sometimes of course e.g. when looking after small children. I recommend cat naps - in lay-bys, public transport, head on the table, even sitting upright st my desk when at work. Now I’m retired I have the luxury of a comfortable snooze if I’ve overdone it.

[Mellypad in reply to veg58]

Thanks for that, yes i find i change like the weather. Had a very hot summer and i have been particularly well, although some days were still very tiring. But as soon as the damp and cold is there, i find it so much harder.

[winter2013]

I agree with everything everyone else has said! I was diagnosed with Bronchiectasis 5 years ago and have mild asthma and have reduced energy. Learning to pace. Good luck xx

[Bronchi1]

Hi....Im same. Gave both conditions. My belief is my lungs are not efficient, have to work harder and that is tiring. It's frustrating because friends can't see my lungs obviously and I sometimes don't have the energy to participate in activities. It can be isolating.

[Mellypad in reply to Bronchi1]

I find it very isolating, i felt that I was too much for a nuisance for people, cause i couldn't plan anything, so i gave up and started doing my own thing. I used to be able to go walking with them etc, and now i can't.

[Lyd12]

I have had bronchiectasis for about ten years now, I am 84. It does get me down, feeling so tired, sometimes in pain, and that is when I'm well. Feeling unsure of myself when I walk into town, just ten minutes away. Will I be ok, I have had a few occasions when I have felt faint, needed to find a seat and wait for it to pass. Then I tell myself how lucky am at my age to run a house, cook meals, not everyone can. At least we understand each other, its hard for husbands and families to know how we feel, so up and down.

[Mellypad in reply to Lyd12]

Thanks for reply, what I dont understand is thst my specialist has never said to me that this is how i should be. He keeps saying you only have mild bronchiectasis, even though i struggle on a daily basis. I think i have learnt myself what is possible and what's not. I do sometimes feel faint if i pushed myself too far. I am half your age, so yes you are doing fantastic. I work part time and some weeks thats enough for me. My husband is very good to me, does alot if the cooking etc.

[Lyd12 in reply to Mellypad]

I can't imagine how hard it must be to go out to work with this condition. You are doing well. Well done, husband, we pull together, and get there somehow. My husband is 89 so I can't expect too much, can I. Just hope he can keep going, afraid of him needing more help than I feel capable of.

[Mellypad in reply to Lyd12]

Im lucky enough to have found an office job, keeps me sane. Used to make cakes but had to give that up, and it was too exhausting and I was in terrible pain from it. I was out of work for a while but mentally it didnt do me any good. I would be restricted to what kind of job I could do.

[watergazer]

yes it is tiring and exhausting and people don't understand as the illness/disease cant be outwardly seen. I also have ulcerative colitis which can be debilitating too. Never know which one is causing me to be so tired. Always love coming on this forum to listen to others and how they cope. Also it puts my illnesses in perspective to see what others are coping with .

[MisUse]

Don't know much about bronchiectasis, but I do have breathing problems due to heart and scoliosis problems which affects the lungs. Just the effort of breathing which people take for granted is very tiring, so Ive learnt to pace myself, and have to acknowledge that if I am busy one day, I'm gonna be tired/exhausted the next day or two. Very frustrating

[Hidden]

Looking at all of the answers it is apparant that as far as the rest of society is concerned we just can’t win. Most of us long termers look disgustingly well and stay ‘slim’ because our bodies are working so hard that there is no chance for any excess fat to develop. As kids we are accused by games teachers of being lazy when running down the hockey pitch once is like climbing Everest. Meanwhile the asthma kids got to sit in the lovely warm clubhouse clutching their inhalers.

Raising children is a long blur of simply putting one foot in front of the other in my memory now. Dragging myself to parent’s evenings and swimming galas. Work was a nightmare. Constant exacerbations caused by the virus spreaders but humiliated and dismissed in the 70s from so many jobs for taking too much time off and ‘not making an effort’

Now I am officially retired but manage to do a lovely 2 days at a Heritage Attraction where I can sit down to talk to the visitors.

Finally society recognises my struggles and I have a Blue Badge. So what happens? One of the dear souls at my book club took me loudly to task in front of everybody for parking in the disabled space outside the venue. When my friend the organiser told her that I had a Blue Badge the retort was ‘well SHE doesn’t LOOK disabled’.

You don’t know whether to laugh or cry so develop the hide of a rhinocerous and a series of swift cutting replies.

Go Bronchs, we are the Champions!

[Mellypad in reply to Hidden]

I wish the slim part applied to me, i cant lose any weight and definitely need too. And i agree people are very quick to judge. I have to walk up a hill to work every morning, and one of my managers nearly runs up it and his 65, he cant understand why i am breathless just strolling up it and im 42. Your expected to be fit and healthy cause your young and look well.

[bayleyray-uk in reply to Mellypad]

Try getting him to put a straw between his lips and a pinch his nose so that he cant breath through his nostrils and then get him to try running up the hill or even walk up the stairs that will give him some idea what life is like for you.

Sue

[Lyd12 in reply to Hidden]

What a wonderful, heartbreakingly descriptive post, well said. Feel myself lucky to have brought up my boys while in reasonably good health, migraines were my nightmare. Did get coughs, troublesome when doing secretarial work, but manageable

Tempted to think of a few replies, maybe, well, you don't LOOK stupid!

Wondered why I am slowly losing weight, now the doctor tells me my cholesterol is too high, just don't know what to cut out, don't eat much at all! .

[greenbexy]

I think if I was you, I would also get some blood tests done, just to rule other things out. People underestimate vitamin and mineral deficiency, which can also leave you feeling wiped out.

[Mellypad in reply to greenbexy]

Had all them done. Gone on magnesium this week, and will see how that goes.

[Aitchic1]

Hi,

I'm 46 and have bilateral Bronchiectasis.The breathlessness is the most frustrating issue but I agree,just recently I find myself tiring easily.I have an active job which sometimes involves working on.I seem ok at the time but afterwards and the next day I'm shattered.Sometimes I wonder if it's because I've never been a good sleeper or wether it's the effects of Bronchiectasis.

[Brenda102]

Thanks for bringing this up and for all the answers. I was diagnosed about 3 years ago, hospitalized twice. I look ok, so my friends keep waiting me to "get better." I keep trying to explain, it is like I am recovering from a bad flu every day. I am trying to find my new "normal." I am single, 67, so I have to manage on my own. I can get light headed when I am shopping, stairs and walking are unpredictable. Some days I feel I can push myself, often I can't. So I don't make many social plans. I got out of the hospital 3-4 weeks ago, on tough antibiotics, so my legs are even weaker and my stamina very slowly improving. But I do have to push myself. My Dr. just gives me a lecture to exercise more, because I too, "look ok." I do take some supplements, could eat a bit better, but not bad. Just read this condition is associated with low Vitamin D, I so supplement. I recommend everyone have Vitamin D levels checked, it makes a difference in our immunity. Thanks for this group, Mellypad, wish we had better news, but we have comfort that we are not alone in this. It is important to be kind to ourselves.

[hoping2improve]

Hi, like you I have Bronchiectasis and Asthma. As others have said, it is how it goes. It helps to know that there are others who understand that. Good Luck with the magnesium. I hope it helps x

[Dibola04]

Hi Mellypad, just wanted to add another voice to these superb replies. Very similar situation to you and I find fatigue the hardest symptom to cope with. I have taken some time off to see if that helps. Although its nice to manage things with less worry about ‘letting people down’, I too feel this doesn’t suit me and I am trying to find a job I can cope with!

[Mellypad in reply to Dibola04]

Ya had to do the same and delighted that i found the right one, the giggles and chat through the day helps to forget how I feel. Hopefully you'll find something soon. It will certainly help the mind.

[Dibola04 in reply to Mellypad]

Quick question Mellypad, how did you handle questions about the time not working, did you mention your lung condition at interviews?

[Mellypad in reply to Dibola04]

No never mentioned it, was changing from making cakes and applying for office job so just said I took a break. They are not allowed to ask about health issues. I went from illness benefit to CE Scheme, so had some allowances.