Feeling sorry for myself

[Cade1]

I’m usually so positive about my health - bronchiectasis, chronic sinusitis & now possibly asthma, but having had little sleep over the past 5 days, I’m feeling down.

I’m waiting for the respiratory nurse to phone back as over past 2-3 weeks I’ve been feeling breathless & congested. Thought it felt like a chest infection (although don’t usually get them at this time of year), so took antibiotics which helped a bit. Am still breathless (worse at night) & last night was the worst. Usually can cope during the day but not today.

Nothing seems to help - postural drainage, ACBT, drinking lots of water. So thought I’d contact respiratory nurse for advice and also thought I’d reach out for support to others who know what’s it like.

[Patsy164]

Maybe you are having an exacerbation and need a rescue pack. See what the nurse says, it comes upon us bronchs anytime of the year. It can be depressing constantly being ill. Probably best to speak to your respiratory nurse as you say. I hope you get on ok.

[Cade1 in reply to Patsy164]

Thanks it’s just nice knowing that there are others out there who know what it’s like.

[Patsy164 in reply to Cade1]

Yes I have found it so helpful knowing other people on here like ourselves. I have severe asthma, bronchiectasis with pseudomonas and sleep apnea . I try and keep myself occupied when I am under the weather and not worry too much about anything else it helps me. I do get like you and feel sorry for myself but as bluenotes says we are allowed to feel sorry for ourselves. Wishing you better 💐

[wheezyof]

I'm not surprised you are feeling sorry for yourself. Bronchiectasis is tiring at the best of times. An exacerbation, change in weather, a few bad nights and any one with bronchiectasis feels low.

I wish I could help. I'm sending love and hugs. xxx

I expect the nurse will do something more practical ..

[Cade1 in reply to wheezyof]

Love and hugs does help thanks x

[Hidden]

Perhaps you have an exacerbation which hasn’t been knocked on the head by the antibiotics and you need a different ab in a higher dose for longer. With bronch, doing less physical exercise, especially in this strange situation which we have been in for months can cause the mucus simply to thicken up. Then any that hasn’t been succesfully expelled during the day sticks during the night and makes you breathless. This isn’t necessarily an exacerbation. It is happening to me at present and I am nebulising an extra isotinic saline two hours before bedtime so that I can have a good go at clearing it before I try to sleep. Do you take carbocysteine to thin the mucus? I can’t tolerate it but many find it really useful to help get rid of the mucus.

If none of this helps I would suggest calling your consultant’s secretary, explaining and asking for help. Unfortunately GPs and respiratory nurses don’t know much about bronch. It is so complex.

All of us bronchs will be empathising with you. It can just be so totally exhausting. Even though I have lived a full life with mine I don’t think that I have slep a whole night in all of my seventy years.

[Cade1 in reply to Hidden]

That’s interesting what you say about thick mucous. I was put on carbocisteine about 18months ago on a maintenance dosage & I was sceptical that it was helping. But I thought that when the morning dose wore off recently, I started to feel congested & drank more to compensate.

I actually thought it wasn’t helping so stopped taking it a few weeks ago. I will start taking it again & see if it helps.

I agree with you about exercise. I used to do a lot in the gym until lock down & now feel so awful that I have no energy to go at the moment.

Thanks so much

[Hidden in reply to Cade1]

One way or another you will find your way through it. Do let us know how you get on.

[Cade1 in reply to Hidden]

I will do & thanks

[Oshgosh in reply to Cade1]

it’s interesting what you say about feeling the Carbocysteine wearing off.

I’ve been on Carbocysteine for about 4 years.

Is it possible that you needs higher dose to get you through the day. My respiratory nurse told me that it can be prescribed 3 times a day.

Perhaps you can discuss this with the respiratory nurse.

Good luck

[Patk1 in reply to Oshgosh]

Hiya.im on 2x day but do increase/decrease too

[Bluenotes]

You are allowed to feel sorry for yourself . 😥

[RoadRunner44]

Hi, Just a thought before you speak to the nurse. Has the mucous changed colour recently. She may ask this as it can give an indication if you have an infection or exacerbation of your condition. If its green to brownish the chances are you will need a different antibiotic and for 14 days. If you don't have any mucous sample pots ask her to provide some so you can provide a sample. The results will determine the right antibiotic you need. Hope you feel easier soon.

[Cade1 in reply to RoadRunner44]

Unfortunately my problem has always been that I don’t cough much up, even with a chest infection.

When I was originally diagnosed I remember disagreeing with the consultant on the grounds I didn’t cough anything up. A bronchoscopy showed my lungs were full of yellow muck that I wasn’t able to cough up & a CT scan also confirmed a diagnosis of bronchiectasis.

Once I started on Azithromycin, apart from the odd chest infection after a cold I have never had any real problems.

So this is all new to me.

[Hidden in reply to Cade1]

I think maybe you just answered your own question. The secret with bronch is control and self management. Getting the gunk out is tiring and tedious but so cucial. All the antibiotics and drugs in the world won’t help if it is lurking down there, quietly breeding bugs.

[RoadRunner44 in reply to Cade1]

Hi again, Have you got a Flutter or Acapella to help remove the gunk? Also have you been on been on a Pulmonary Rehabilitation Programme? If not ask the nurse if you can attend one. Its a 6 /8 week programme which you attend twice a week for 2 hours. They cover everything and I found it invaluable. Hope this helps.

[Cade1 in reply to RoadRunner44]

Hi yes I have a flutter which is helpful. I usually go to a gym & have a PT (personal trainer), so pulmonary rehab has never been offered. But I am being referred to a respiratory physio just to check technique & things.

Thanks

[RoadRunner44 in reply to Cade1]

Things seem to be going in the right direction. However, Rehab is not just exercises its part educational and I have learnt so much about bronchiectasis that I didn't know before. Cheers for now.

[Sops]

so sorry to hear you are unwell, i have the same conditions and am trying to contact my surgery as my blood test is very overdue and i have heard nothing about a flu jab despite being clinically extreme with arthritis thrown into the mix. i have a stabbing pain in the sternum if i lean forward , usually have one in the ribs on the left side, but have not had this before. A, about to order on line a new rescue pack, do you think maybe you are having an exacerbation,? Hope you get through to your respiratory nurse and get helpful advice.

Take cate sopsx

[Cade1 in reply to Sops]

It is all so frustrating at the moment with no one wanting to see you f-f.

I think it’s probably a combination of things.

I was supposed to have been referred to ENT for my sinuses in February, but that never happened. After me chasing it up once lockdown finished & services resumed, I finally spoke to ENT consultant last week & have had a CT scan of sinuses - I have an appointment to discuss this in December!! I will try & push that forward once I am feeling better.

But this has meant that my sinuses have been ??dripping fluid into my lungs & I suspect causing this exacerbation.

I have never been able to cough much up & have always relied on exercise to help things move.

LittlePom has started me thinking about different ways of helping thin the mucous so I can cough it up. So will give that a go.

On the plus side. I had my bloods taken 2 weeks ago & have a flu vaccination due in October.

Thanks

[peege in reply to Sops]

Sops do give your surgery a call to make an appointment for the flu jab. Mention that youre lung vulnerable in case they have a 'special' list. I'd not heard from mine re vaccination either to called them a couple of weeks ago and have one 22/9. I think a lot of practices are not up to speed with all their new procedures for C19 to deal with.

Cade1, hope you get some action soon.

When i was 1st px Carbocysteine it was for 2 capsules 3x daily for a few weeks to really get in there to break up the mucus. I too have appalling sinuses. Had an op to help clear them back in 2007. I recall the ENT consultant showed me the scan, all the face and head cavities were full and the nasal passages for escape were only a hairs breadth. I've taken a steroid nasal spray ever since. Was treated for migraine for years when all the time it was sinuses. 🙄. I know they're full again, the pressure can make you feel awful too. P

[Sops in reply to peege]

Phoned practice manager, who said will not get vaccine until mid October and no plans for special slots for vulnerable-pointed out i have been shielding since beginning of March..

at least managed to book my Should have been March liver function test for this Friday.. thanks for your help.

Sopsx

[Mooka]

Hi Cade1

I’m sorry you are having problems. I know how miserable they can make you. Have you tried rinsing out your sinuses with neilmed? I have Bronchiectasis and have had severe sinus problems. Putting your head over steam may help too. If your cheeks are painful or you have headaches it could be the infection is in your sinuses. You could also try asking your GP to bring your ENT appointment forward. Hopefully if your ct scan shows your sinuses are blocked someone will let you know sooner anyway. 🤗🤗🤗🤗

[Cade1 in reply to Mooka]

I’ve tried many things for my sinuses over the years. Putting my head over steam seems to work for me.

That’s a good idea about asking the GP to bring it forward - I hadn’t thought of that.

Thanks

[Mooka in reply to Cade1]

It’s worked for me in the past. Good luck.

[mixmix]

Sorry to hear this Cade1

Maybe ask them to take a sample from you noise or throat and sputum to determine if it is a chest infection and which one it may be. From that you can get the right antibiotics.

Does steaming work for you? Or a steroid nasal spray. Maybe go back to GP and express what’s going on to be referred to a respotory doctor.

Sorry I couldn’t help more. I hope you find a solution

[Caspiana]

Hello Cade1 . Very sorry to hear you are having a hard time of it. 😔 I don't the same condition so it's hard for me to give any practical advice but I really hope you feel better very soon. Thinking of you.

Cas xx 💐

[Maricopa]

Lack of sleep can really effect everything regarding ones state of mind.

[Patk1]

Hiya.have u steroid rescue pack? I always need them with antibiotics.inflammation goes hand in hand with infective exacerbation and in itself cause probs.id consider taking them, to settle it faster & ultimately reduce damage being done.gd advice from others.get well soon x