I’m on CPAP - please help me survive hell

[LittleSpyintheSky]

I’m on CPAP. Everyone is doing their best to keep me alive but I feel traumatised. Family and friends are still asleep. Is anyone there to talk to me?

Hi, littlespy so sorry you are so ill. Haven’t read all the thread but so pleased you are feeling better. The post about the deaf lady really made me sad. My mum caught COVID in hospital, at 89 she was poorly but not as bad as you, didn’t need oxygen, but of course we weren’t able to visit, but was able to ring, but most of the time it was useless she’s very deaf and couldn’t hear, I travelled 40 mile to the hospital with the batteries for her hearing aid, and asked if I could speak to a nurse about it, they said they were too busy.
I nearly lost my mum twice, there were lots of things i wanted to say, please if anyone is reading that can help please make sure the patient can hear it’s so important.
My mum has been home two weeks she tested positive for the third time the day before she came home, they said it didn’t matter. She’s still far from well but trying hard bless her. Good luck .

Merry Xmas LittleSpy. Are,you allowed a visitor today?

Merry Christmas, hope you are feeling better today

Merry Christmas LittleSpy x

Delurking. So glad you feel on the mend and a Happy Christmas to you. I am so sorry about the deaths you have had to be close to . I 100% fight for the deaf in such situations. Such poor care if hearing aids aren't activated, how can you give information needed, how much more confused and worried you must be.

Merry Christmas @LittleSpyintheSky.
I hope each day gets even better for you.

Merry Christmas @LittleSpyintheSky
I’m not sure why they’ve said you have to be negative to go home?
Tests can show positive for 90 days due to the dead virus, but you wouldn’t be contagious

Merry Christmas

Look after yourself, OP.

I have to sleep with a CPAP every night (sleep apnoea) so to me it’s a miracle machine, but that are bloody uncomfortable.

Merry Christmas @LittleSpyintheSky, I’m sorry you’re spending it in hospital but I’m glad you’re starting to improve.

@Katyy

Hi, littlespy so sorry you are so ill. Haven’t read all the thread but so pleased you are feeling better. The post about the deaf lady really made me sad. My mum caught COVID in hospital, at 89 she was poorly but not as bad as you, didn’t need oxygen, but of course we weren’t able to visit, but was able to ring, but most of the time it was useless she’s very deaf and couldn’t hear, I travelled 40 mile to the hospital with the batteries for her hearing aid, and asked if I could speak to a nurse about it, they said they were too busy. I nearly lost my mum twice, there were lots of things i wanted to say, please if anyone is reading that can help please make sure the patient can hear it’s so important. My mum has been home two weeks she tested positive for the third time the day before she came home, they said it didn’t matter. She’s still far from well but trying hard bless her. Good luck .

It’s unforgivable, isn’t it? How long does it take to flip some new batteries in? It should be a priority.

Thank you for all your best wishes.

I’m not having a great time. I’m struggling with almost monumental levels of anger at the moment. I’m not naturally an angry0 person - in fact I really like people and have quite high levels of patience. But, unfortunately, not at the moment. I’m ashamed at how many times I’ve raised my voice. I don’t know where it’s come from, but it’s quite frightening. Maybe my system needs this extra push?

Are you on steroids such as dexamethasone little? These can give you the rage as a side effect

Yes - I am. Interesting. Thank you for that. I thought I was finally losing my marbles

@dappledsunshine

Are you on steroids such as dexamethasone little? These can give you the rage as a side effect

Is that like 'roid rage' that sports people get when they use steroids?

I don’t know because I’m genuinely not a ragey type person. It always seems a complete waste of energy to me.

But there was someone in here, who has now just gone home, who was making my life more miserable than it needed to be because she was being utterly selfish. Totally unable to appreciate at all the impact she was having on me and my life within these four walks. She was insisting on having her curtains pulled right out, which meant I couldn’t see anything at all towards where things were happening - just curtain. I just wanted her to open them a little, but she kept pulling them back again. Sounds utterly ridiculous, but I was trapped when no-one else in the ward was so trapped. Everyone else had their curtains pulled back.

I was feeling quite high levels of rage towards her, I can tell you. But now she’s gone, I can feel my levels of rage disappearing.

@LittleSpyintheSky

By the way, my underlying condition, was some lung damage caused by radiotherapy to both breasts during two lots of breast cancer. Covid found the weakness and damaged them a bit more. There must be millions of women in a similar position.

Oh god you poor poor thing! I hope you are off it soon, how grim for you

(((((((big hugs)))))))

XmasBelle - thank you - I’m so much better now. What doesn’t kill us makes us stronger (but in case anyone up there is thinking of testing me any further - name isn’t Job and I’ve proven myself now) 😁

Hope you feel better soon! And just to say yes steroids and dexamethasone can make you feel batty and cross

Thank you Oly4 - you knowledgeable folk are an absolute godsend

Your story should help people who are bemoaning their Xmas, be just a little more appreciative - thank you. So sorry you have had to experience this, it sounds both terrifying and highly stressful - I hope you get a bit closer to going home today, being cranky is also a sign of getting better

Yes @Yohoheaveho exactly that.

@LittleSpyintheSky nothing helpful to add except that yes yes steriods made me go bonkers ,full of rage . They can also make you eat all the time!

I so recognise your experiences - the deaths of neighbours ,the closed curtains .It's another world you've entered ,

sending love and strength

[quote peridito]@LittleSpyintheSky nothing helpful to add except that yes yes steriods made me go bonkers ,full of rage . They can also make you eat all the time!

I so recognise your experiences - the deaths of neighbours ,the closed curtains .It's another world you've entered ,

sending love and strength [/quote]
So sorry you have been through this too 💐

I’ve been singing silently to my boppy music but at very high velocity if that makes sense. I can bring my oxygen up to 99 % on just the 4% I’m on at the moment. I talked to someone for half an hour with no oxygen whatsoever. I’m not supposed to be doing this but I’ve been pretty much ignored all day today. I’m not staying here any longer than I have to!

@Roystonv

Delurking. So glad you feel on the mend and a Happy Christmas to you. I am so sorry about the deaths you have had to be close to . I 100% fight for the deaf in such situations. Such poor care if hearing aids aren't activated, how can you give information needed, how much more confused and worried you must be.

Sorry - I missed this post. Thank you for fighting for the deaf. This is so, do, so important. We need to be fighting for this. Both for those who will be lost and those who will be left behind to mourn them.

(Flowers)

People are ridiculously selfish when in hospital, the first time I was in there was a woman watching emmerdale at full volume at 9.30 at night with no earphones. I've just been in with coronavirus, it was absolutely awful. The first night there was a woman, funnily enough also had her curtains drawn round her, who kept the rest of us up until 2.30am with constant, very loud demands for a cup of tea!! Luckily I was then moved to a side ward, which was much more peaceful, but I did sometimes get forgotten for food/drink. It was always rectified, but often with whatever was left on the trolley. Like you I was on steroids and the hunger drove me to the depths of fury, but I know the nurses work very hard, especially at the moment as they are so short staffed. I didnt discharge myself, but I did leave before I was well enough to because I just needed to get out of there. I feel for you. Hope you continue to improve so that you can get home.