How to get some sleep?

[Mama-bear60]

I am exhausted, I am struggling to find a position for sleeping . I’ve tried all ways but The wheezing and crackling disturbs me. I am worn out and this is just the start of my journey with Bronchectasis.

Can anyone help with how they manage?

[Alberta56]

My husband recently persuaded me to take a valerian tablet. It worked like a charm. I currently sleep on 3 pillows- after my diagnosis I slept on one, on the physio's recommendation, but I now need more to breathe easily. Hope you find a solution soon.

[Cloudancer]

I also sleep on 3/4 pillows which I find helps.Do hope you get some good quality sleep soon

[Bingo88]

Good morning Mama-bear60. You have had some good suggestions about more pillows which hopefully will help you. I suggest getting a V pillow. From like Argos and that may give you more shoulders support

[Lizzab]

Have you been investigated for asthma?If so are those inhalers doing their job?

Are you doing lung clearance one two or three times a day?

These things made a huge difference to me.

I also learned to breathe with the belly and not the lungs.

I changed my diet, that made a difference.

Walking helped me too.

None of the above may be useful but it was for me.

I feel for you and hope you can find improvement.

[Karenanne61]

I sympathise! I was referred to a sleep clinic but apparently I'm not bad enough (I don't fall asleep when driving!) so have been referred for sleep therapy - still waiting! However, my daughter recommended Yorkshire tea's bedtime brew and it has helped. I've also found, because I drink decaf tea now, even one cup of caffeinated tea keeps me awake.

[Izb1]

If its your lungs keeping you awake you could try antihistamine, they will dry your mucus up enough for you to get a nights sleep and also make you sleepy. My hip is going at the moment and nothing i take or do helps me to get some sleep, I have always had a bad sleeping pattern and rarely get more than a couple of hours at a time but at the moment the pain is terrible so am feeling like a zombie. I finally have an appointment in June and as this has been since last August and am hoping the injection will work. I sympathise with having no sleep and hope you find a solution x

[Lutontown]

I sleep with my trunk fairly upright in an adjustable bed. If I lay flat I tend to fill up with muck. Do you find you can sleep alright in an easy chair?

[MoyB]

I have a reclining chair and have sometimes found it helps to sleep in that.However, you may eventually find that regular lung clearance and the correct medication (correct for you, that is) will quieten things down and it won't be such a problem.

I finally saw a consultant in 2016 after having one chest infection after another. My gp was a lovely man but was not providing me with the right treatment and neither was he referring me to the hospital. I asked for a private referral and two weeks later I saw my consultant who transferred me to his NHS list immediately. He ordered a chest x-ray and ct scan which showed bronchiectasis. I already had been told I had copd and asthma.

I was in a state! I coughed up gallons of gunk every morning and night. I could hardly breathe and could barely cross a road, let alone go shopping or even out for a treat.

Pulmonary rehab helped me to understand my lungs and how to look after them. My consultant changed my inhalers and referred me to the community respiratory nurses who are brilliant and can be contacted 365 days a year for help and advice. They can get you an appointment with your consultant if you need one too, or at very least, they can discuss your difficulties with them and come back to you with more advice.

DO NOT GIVE UP!

You will need to be proactive about getting treatment! It won't just come to you, unfortunately.

But I believe you may be able to feel much better than you do now.

A simple thing that has helped me is Carbosistein. This makes the mucous looser and easier to get up. Since taking it three times a day, my night time rattle has completely gone. It used to disturb my husband as well as me, but is now a thing of the past.

Also, I take azithromycin three times a week. It suits me and I have been a lot better since starting it.

It has taken time to get where I am now but life is much better than it was in the early days of living with bronchiectasis.

I still get breathless if I walk too fast, too far or up an incline, but it's manageable. I cough, of course, but nowhere near as much as I used to.

I am enjoying life again and, I hope, you will too, once you have things under control.

Keep us posted.

Xx Moy

[Mama-bear60 in reply to MoyB]

thank you for that info, it’s reassuring to know things can improve. I feel a little better today after starting a new course of antibiotics three days ago.

My GP has referred me to Physio and sent sputum off for testing. I think I need to just take my time and learn how to manage this condition.

It’s a bit scary at first, especially in the dead of the night when you’re struggling to sleep and get you breath.

I’ll stay positive and look forward to feeling capable of even taking my dog for his afternoon walk.

Thanks again, the advice and support is much appreciated. X

[MoyB in reply to Mama-bear60]

You're welcome! When I first got my diagnosis I was feeling so unwell that I thought my life as I knew it had come to an end - but then I found the lovely people on here and couldn't believe what they were all getting up to! There are people here, of course, who are much more unwell than I am, or than I have been, but there are also lots of people out there walking their dogs and spending their days doing things they enjoy.

So take each day as it comes and look for what I call 'the silver linings' wherever you can. I found it useful to write them down each day. Day by day, you may find more and more things to appreciate that you may have missed during busier times.

It's great that you've been referred to a physio and it sounds as though you may be on the right antibiotic now. Don't be surprised if your sputum result comes back as 'normal flora' though. They often do, but that doesn't mean that you don't have an infection - just that it didn't show itself in that particular sample, or that it wasn't identified (my consultant explained that to me.). I used to feel as though I'd made a fuss for nothing as quite often, nothing showed up - but when they CAN identify the little blighters that are making you so unwell, it's great because then they know exactly which antibiotic will be best for the job.

I'm sure you'll be feeling better again soon, but try not to rush things as your body needs rest at the moment. A gentle stroll with your little dog sounds great, but don't push yourself to go for a three mile hike! If you can manage to get out for a change of scene it will no doubt do you good, so I hope you make it.

All the best,

xx Moy