Who else is awake tonight?

Here I am at 12.30 waiting for sleep to come and knowing it's a long way off.

I've had a great day at Sheffield Park, Sussex, roaming around with my husband on one of the National Trust's double mobility buggies. Fantastic!

Unfortunately, later this evening, my temp went up so I've done my sputum pot and started the antibiotics. I don't want to put the duvet over me as am trying to get my temp down again - it's come down a lot already since stripping the bedding back and taking paracetamol.

I can't sleep without snuggling into the duvet which will probably put my temp back up, and I can't sleep because I'm frightened of the damned pneumonia that can come on so suddenly and starts with a sudden temp rise. Oh, this blessed chest condition!

Anyway, folkes, just thought I'd come on and see if anyone else is up so we can commiserate with each other.

xx Moy

47 Replies

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  • Hello there MoyB and its just blooming horrid when you're not feeling too great and can't get off o sleep isn't it ? Although I do normally have trouble getting off to sleep, tonight I'm being totally boring and listening to the radio on the USA election ! I do hope you manage to keep that temperature down and keep any infections at bay. United in being awake tonight !!!

  • Thanks for your reply - sorry I missed it last night. You'll never believe it but I nodded off in the chair and when I woke up my temp was back to normal so I went to bed and slept! I think I was just in a bit of a panic about the sudden temp rise - I know what it can mean and so does my poor husband. He came looking for me and found me asleep over my computer.

    Sometimes when I can't sleep I try the Craft channel - that can send me off as they are quite interesting to watch but boring to listen to. I close my eyes and just listen to them drone on. But tonight you had the US to tune in to.

  • 2/30am I'm still up v/cold here on the iow any one still up.

  • I'm always up cant sleep

  • Ditto! I've had Insomnia for years. I used to take something to help then it gave me bad headaches.

    I won't take any of the sleep aids due to their side effects.

    Chamomile tea worked for a time & it also stopped working.

    So, here I am.

  • I found the same with the Chamomile tea. The one I bought from the health food shop seemed more effective that the supermarket one.

  • 3:47 am here. I'm aware

  • is it v/cold on the mainland its bad 4 my lungs.

  • Morning Moy. I hope that you're feeling a bit better and that you've managed to get some sleep. Good luck with keeping on top of the nasty bugs.

    Take care.

    Pam XXX

  • Well hope everyone managed to get some sleep and are all well as possible this is going to be my first winter with my lung problems so dont really know what to expect i am on nightshift by the way so cant wait for my bed lol I did have very heavy dull pains in my back and felt chocked over the weekend just wondering if its been due to all the fireworks? Anyway good morning or in my case good night x

  • G'day Moy

    Thought I would respond to your post

    It is 6 hours since you posted so I am hoping that you have dozed off.

    Night time for you is AM for me as I reside in Australia.

    Hope you are feeling better

    Will

  • Yes, I dozed off in the chair and when I woke up my temp was back to normal so I went to bed and slept. I panic a bit when my temp goes up suddenly as it has been the start of pneumonia previously and I don't want to go to hospital in the middle of the night!

    Temp is up slightly this morning but not much to worry about plus it's day time now so all feels more manageable!

    Where are you in Australia?

  • Glad to see you are feeling better.

    We reside in a little village called Seville, 55K's east of Melbourne..Victoria.

    Good to see you monitor your temp.

    Most people do not realise the importance of having a top of the range thermometer in the home.

    We rely on this item more than any other. as it is easy to use and gives an instant measurement.

    Stay happy

    Will

  • Didn't get to Melbourne when we visited in 2000 and our rellies live near Sydney and Perth so don't know much about your area. I'm guessing it's getting warm over there now - we're going the other way!

  • Our seasons have changed here.

    Spring seems to start around late October as from the past years of September.

    I bet you enjoyed Perth, it is a lovely place, I have a cousin who lives there, best climate!!

    Sydney is not one of my favorite places, prefer to go to the moon than there.

    Sun is just rising here so I had better get out and feed the animals

    Take care

  • Good morning Moy,

    I too have been awake but didn't like to go online as my daughter is sleeping in the computer room. Here's hoping you have managed to get some sleep by now, and you are not coming down with anything nasty. Not fair you feeling like this after having had a lovely day out, it is a nasty vicious circle.

    xxxxx

  • Hope you feel better soon, like the idea of the double buggy, glad you enjoyed it. Joyce

  • My temp is only slightly up this morning and hopefully the antibiotics will soon kick in. Husband has been despatched with my sputum sample! Oh joy!

    As for the buggy, I'd recommend it any time - it was great!

  • Good news on both counts.

  • I'm still up. So sorry to hear you battling illness again. 🙏🏻 & hugs!

  • Hi MoyB

    I hope you got some sleep and those nasty bugs aren't making you poorly. I too panic when I get a cough and have lots more sputum as I always think of when I was really ill with pneumonia.

    sounds like you had a great day out.

  • Yes, it's the thought of pneumonia that gets me in a panic. One time I went to bed feeling fine and woke in the night feeling SOOO cold. I was shivering and that was because my temp had gone up. I collapsed in the loo and the medics were called. I ended up in hospital on IV antibiotics. It was such a sudden decline that I'm now frightened to death of it happening again - hence I found it hard to go to sleep!

    It was a shame after such a great day out - but I'll try and focus on the better part of the day! My temp is only slightly raised this morning so hopefully the antibiotics are doing their stuff and I will soon feel better.

    Thanks for your post.

  • Moy, I was up until 3.30 am as well but because I was watching the American Election coverage, had my phone turned off. Like you, I wasn't feeling great, at dinner time a streaming cold started, I felt quite feverish and knew things were slipping. My breathing became so wheezy that it was actually rattling. I decided ( for once ) to be pro-active and took 40mgs of Deltacortryl at about 4. It certainly helped and today I will send in a sample. Over the years, I've had three experiences of sudden onset pneumonia and they started exactly like yours. Waking up trembling with cold. This happened to me while in hospital in height of winter. The nurses rushed in, stripped back all the bedclothes off me, turned a fan on and gave me a jug of water filled with ice cubes. I thought I was going to die from hypothermia.

    No fun, so I can completely understand your alarm. Hope things settle down for you ( and me) and that we've managed to avert a crisis.

  • We need to stick together and show the bugs who's boss!

  • Nancy, how are you and how is your friend that you was about to come home from hospital a few months ago ? I hope you and she are both doing well. I have my usual cycle of infections and exacerbation but still have good periods too.

    How's the reading going ? I've joined a book club at our local library and an enjoying it. Sorry it took me so long to reply to your comment. I've been so embroiled with watching CNN and all the post-election analysis. But today, I'm putting it out of my mind and getting back to real life.

    Best regards to all of you in lovely Colorado.

    BJ

  • Now please, ladies, you've been doing all the right things to look after yourselves and avert the crises so let us know all is well.

    Funny, or not, that we do all we can to avoid being ambulanced in to A and E in the middle of the night. No traffic, much quieter when you get there, nice sleepy doctors. But I don't like it either.

    Be better soon. Sue x

  • Am on the meds and spoke to Dr who said take prenisilone as well as antibiotics, so am zapping it with everything! Feeling better already!!

    I love your positive spin on the middle of the night blue light trip!

    xx Moy

  • It's the only way I've done it, May. By the time the paramedics are in the bedroom with all their kit, I lose the ability to argue and insist I'm fine.

    You did all the right things, and at least it wasn't a weekend. Now get better. I love the sound of your double buggy, btw.

    Sue xx

  • It was great fun, Sue! All the little kids waved and lots of people stopped to speak to us. It was a great ice breaker!

    xx Moy

  • Sue, even though I've probably almost lost the will to live by the time paramedics turn up in my bedroom, unfortunately, I haven't lost the ability to be mortified. Last time, about a year ago now, it was a bit of a crisis and while taking the nebuliser they immediately gave me, I found the sight of those nice, three smiling young men, gazing at me and round the room, very embarrassing. At that stage, I had been confined to the bedroom for three days and it was a real tip. Cups of half-drunk cold tea and remains of soggy cornflakes in a bowl . My locker was piled high with all the stuff, I'd been frantically self-medicating with and the things that are usually there had somehow ended up on the floor. There were clothes and phones and books and fans - complete chaos. A funny end to this story was when I told my sister a few days later. In that unique big-sister, passive aggressive sort of way, she said (un) comfortingly: 'well I'm sure they're used to it. They probably have to dig people out of worse kinds of messes every day.' We both knew of course, that she was quite convinced my messy room was probably the worst the medics had ever seen. As you can imagine, I was really comforted :) Of course I realise that in the big scheme of things, the mess didn't matter at all but despite being so ill, I did feel embarrassed at the time. Next time I need an ambulance, I'll try to arrange to be in my best PJs, hair combed and room tidy. And the chances of that happening are .... Minus zero. :) :) :)

  • Oh BJ, that's brought all sorts of cringe making memories to mind. In my bedroom, too. It's the 'poor old dear. Why does she need all those teddy bears at her age?' look that makes me want to cover myself with the duvet.

    Another was when I was in last time, and they pulled my PJ bottoms off in case they needed to get to the femoral artery. No one suggested later that I might like to put some pants on so that whenever the physio took me for a walk he was half bent down trying to hold the two sides of the hospital gown together to preserve my decency.

    I suppose there's hope for us if and while these things still matter.

    I hope you're feeling better, and that things are settling for you? Oh, and I've got an older sister very much like yours!! xxx

  • These things matter to me too, Sue and BJ! It was being totally mortified one time that led me to employ a cleaner! She only comes once a fortnight for a couple of hours but we stay so much tidier in between her visits than we used to.

    As for the joy of hospital, I was paraded through a load of clinic areas on a bed in my pjs - no modesty blanket. By this time it was morning and there were members of the public everywhere. No bra, no pants - I felt SO naked, even though I was covered with pjs. When I got to xray they kindly provided me with a blanket so I didn't feel so bad going back.

    Last time I was in, I was discharged in my pjs and dressing gown at 4.40 in the afternoon. I said I needed to go to the loo and the nurse just said, 'Oh, there's one accross the A&E waiting area - just go through this door. I pointed out that I had been kept in bed all day, diagnosed with pneumonia and didn't know if I could make it accross the waiting area (never mind the indignity) so she told my husband where he could get a wheelchair and left us to it! Imagine how great I felt - thought I was going to wet myself en route, too!

    Still, as you say, it's good we're well enough for these things to still matter Lol!

  • Moy, you've certainly had your share of hospital indignities, haven't you ? I mean how hard would it have been to find you a blanket ? I always wear underwear under my PJs for just that reason. Especially in hospital, with all those medical students queuing up to listen to your crackles :)

    A cleaner sounds like a great idea. Must examine the finances.

  • As soon as I think a hospital visit could be on the cards I try to be as decent as I can be now. It doesn't always work, though. Last time I was trying to get ready for my shower when the breathing difficulties let to a call for an ambulance. I did manage to get a basic covering back on! Haha!

  • Phew ! That was a relief :)

  • There'sa reply for you further down! x

  • Oh Sue, I'm so sorry for laughing but that image of you, pants-less and trying to preserve your modesty, had me in stitches. I hope you managed to restore your - erm - privacy after the crisis had passed :)

    I don't have teddies, just three cats who, thankfully all ran away when they heard the voices and footsteps on the stairs.

    I think you're right that it's a re-assuring sign to be aware of these things. Hopefully. A sign that we're not about to croak - yet :)

    The steroids certainly helped with the wheezing and rattling and the cold is settling down a bit. I don't have a lot of gunk but constant small amounts in the back of my throat and at the top of my lungs. This morning there was a fair amount when I woke up but I didn't have a container. My husband got one today, so if it's still there in the morning I'll send it off. I'm trying desperately to use fewer antibiotics but can't seem to get longer then three weeks between courses.

    How are things going with you Sue ? I know it takes a long time to get back to base line after a bad spell like the one you had that finished up in hospital. I hope you're remaining stable, more or less.

    And yes, where would we be without our big sisters ?

  • Need time to reply to this! Early start tomorrow for hospital appt. don't go away - will get back to you

    S x

  • I'm always here, as long as my phone is charged. Hope the appointment goes well and please don't feel any pressure to reply. Sometimes, typing out a message is just too tiring.

  • I see you are having the same problem as me. I was in a pattern of one week going downhill, one week on antibiotics and one week good. Now I'm on two weeks antibiotic/steroids and I go an extra week or two without an infection. It's a pain in the proverbial! I don't see the consultant again until May. He said he wanted to see how I went on the two week course of meds but if the pattern doesn't change he might put me on the regular antibiotics. I'm rather hoping he will.

  • Do you mean on Azithromycin ? If you haven't taken that then you may find it very helpful. I take it every day, along with the nebuliser antibiotic, Colomycin, in addition to the constant courses of oral antibiotics. So console yourself, you're not as bad as me.

  • I don't know the name of the proposed new antibiotic, only that you take it two or three times a week. The consultant wants to see how it goes. My new doctor phoned me yesterday to check how I am after reporting I'd started my meds. He sounds very nice and seemed surprised I have to wait until May to see the consultant again. Maybe he'll speed things up for me. I should ask, I suppose.

    You have quite a few meds to take, don't you? Still, they keep us going. My husband has this thing about counting up the number of pills I'm taking in a day and announcing it to friends. I don't know why. I think that , as he rarely needs to take anything, it must appear horendous to him.

  • The antibiotic that was mentioned to you is azythromicin.It's good. X

  • Hello again BillieJean,

    Back from a CT scan and a long visit to clinical measurements because the 24 hour oximeter test to see if my O2 levels drop on exertion didn't really work because my finger was so cold. And the batter ran out after 18 hours. These are some of the follow-up tests after the stay in August.

    It's kind of you to ask. BJ. I'm definitely better but the beta blockers have slowed me down as well as my heart rate. It's been difficult to accept that I can't do as much, especially in the afternoons. I've spent my life in overdrive till a couple of years ago, and making the change has been really hard. Like Moy I have cleaners every two weeks, and a gardener every two weeks because it was upsetting me so much not to be able to do it! In myself, I'm much better.

    The without pants incident was in fact one which at the time I was totally unaware of. Think I was much more ill than I realised. I woke in the night two or three weeks later, thinking "I didn't have any knickers on". The physio tried to preserve my dignity, bless him.

    I hope you managed to get a specimen sent off. At this time of year there are so many ripe bugs about that I think you just have to take what you need to take to keep on top of it and avoid going back in. It's difficult but the sooner you start the rescue meds the better the response seems to be. Have you tried vitamin D3? There's evidence that it helps boost your immunity. Worth a try.

    Keep in touch, and look after yourself. xxx

  • Must have been a little frustrating that the 24-hour monitoring didn't work out as planned. I suppose you'll have to do it again.

    I've heard that beta blockers can have a slowing down effect and that some performers look for them to steady their nerves, rapid heartbeat etc. maybe your system will tolerate and adjust to them more, as time goes on. I hope this happens.

    I have some idea of how hard it must be to have your life change so drastically. Over the last three years, I've had to make a lot of adjustments as well but it sounds like your's was more sudden and sudden is always worse. In the past two years, I've had periods of being reduced to almost total immobility but miraculously ( and thanks to my consultant who I'm always giving out about), I recovered to levels that include almost constant infection but manageable levels of sob. I'm so grateful for this but now that my left lung is completely eaten up by fibrosis and doesn't work any more, I don't know how long me or my remaining lung will continue functioning. But as I have no answer to this question, I'm trying ( with the help of Mindfulness) to just put it aside and be grateful for the amount of mobility I still have. I think you just adjust, stage by stage and discover that it's still possible to have a lot of pleasure in life, even when very restricted.

    Thank you for your sensible advice about the importance of early intervention. This is something I've fallen down badly with over the years and frequently suffered badly as a result. This is an aspect of chronic illness that I find hard to deal with - the constant need to make decisions and judgment calls about what you should/should not do or when to seek help and intervention. Oh dear ! The litany of self pity is starting, I'll have to get out my violin.

    Hang in there Sue and always remember that 'good spells' can happen and things sometimes ( occasionally) can get a little easier. This is how my consultant always signs off with me as he prays that he won't have to deal with me for another while. He wishes me a 'good spell' and that's what I'm wishing for you. Xx

  • Hi moy I had the same problem.1 three years ago. I had a liftime injection for pneumonia, now I don't hace to think of that now.2I take everynight a 20mg of temazepam that gives me a fair sleep,I should add that the gps do not like giving them because thay are habbit forming.As I am 76 the doc said that will not matter at your age, but I stil have to sign for them.Hope this helps good luck Brian Ps I should add I have enferysema.

  • Back to the GP yesterday (he asked to see me as he is new and we've only had telephone contact so far). He has increased my steroids and told me to wean off them this time, so I will do as I'm told. The consultant had told me no need to wean off.

    I think the infection's under control now as mucous is clearer, but I'm getting sudden viscious coughing fits that have pulled a muscle low down in my back. Oh joy!

    What did BJ say about the litany of self pity?! Time for me to stop moaning and look on the bright side.

    I've just been organising a sewing machine as a joint Christmas present for my daughter-in-law and granddaughters. D.I.L. sounds really excited about it. She has some money to put towards it too so it can be a good machine. The kids will be thrilled to have one to use at home - they love getting on mine and are getting quite skilled. They are 8 and 11and very keen!

    It's given me something to research and focus on too, so win win!

    xx Moy

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