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?

Great that you have your music to help you through this. I hope you continue to improve, wishing you all best wishes on Christmas Day - a difficult time to be in hospital any year but this year more than most.

@dustyknickers

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.

I’m so sorry you have been through this too.

I was raging to DH through chat saying I was going to discharge myself and he was calming me down. Then they took my off oxygen altogether and my stats are fine. I was feeling sooooo hopeful that I would be going home tomorrow.

Then DH rang me - he’s been keeping the truth from me as he didn’t want me to worry. He’s now got strong symptoms - all the usual stuff. Chills, fever, aching bones.

You genuinely couldn’t make it up. We do have space to isolate from one another but, Dear God, give us a bloody break.

I hate to say it but you are going to need someone to look after you when you get home. I've been out 4 weeks and can make a cup of tea, but definitely couldnt cook a meal as I become too breathless. Have you got anyone else who can help you?

@dustyknickers

I hate to say it but you are going to need someone to look after you when you get home. I've been out 4 weeks and can make a cup of tea, but definitely couldnt cook a meal as I become too breathless. Have you got anyone else who can help you?

Blimey, dusty knickers, I’m so sorry to hear that. I have only briefly looked at the long COVID thread. I hope you feel better soon (flowers)

DH was up for looking after me, but he’s just confessed he’s feeling very poorly with Covid. I have 3 young adult kids at home too. But think we probably all need to be staying away from one another. What a total disaster.

Bless you, that's really bad luck (on top of all your other bad luck!) Maybe your children could cook some simple food for you and your husband for you to eat in isolation. You really won't be able to overdo it. What a rotten Christmas for you. At least you might get out soon which is probably the present your family want.

Oh gods, littlespy. Welcome to the "You Couldn't Make This Shit Up" club

I'm so glad that you are getting stronger and are feeling the need to get home, but slowly does it, yes? And I hope your husband doesn't feel any worse than he already does.

Emotions are going to be high- you've lived through a lot of trauma in the past few weeks, days even. It's taken me several days of text conversations with my husband to get him to accept that while he will have limitations on what he's able to do for a while, they can be worked around and we will find the help we need as a family to get everyone back on their feet properly.

I hope you continue to improve steadily, just pace yourself so you don't exhaust what energy you have.

Sorry to hear about your situation now. That must be so disappointing for you and your DH . The fact that you are so fed up is a good sign , if you were still very ill, you would not care about or notice anything.
If you look back at your original post , you will see how far you have come.

Hospitals are so busy now , it is extremely difficult for anyone who has any disability at all. Unless they have someone to advocate for them, they often get lost in the system. Especially now as they can no longer have visitors.
I now have an elderly relative living with me . She has very limited sight and is registered blind. She had been admitted to hospital to monitor blood pressure . Whilst there, she acquired hospital pneumonia and had oxygen .I was able to visit her and she was obviously becoming very weak. Turns out that she was not eating or drinking. Staff would bring trays but she was unable to see well enough to feed herself and was too disoriented to be able to ask any passing staff for help. Then her false bottom denture was lost , really limiting what she could eat when I was going to feed her.When she recovered from pneumonia and needed no further medical intervention , I made the decision to take her home with me. A care package would have taken two weeks to sort out and I felt it was too long to leave her there.
It took quite a while to build her up . I also organises new dentures . But she recovered and yesterday ate her Xmas dinner with a glass of wine.
It seems frightening to think that she was being dangerously ill merely because of lack of basic care regarding food and drink.

I don’t think your adult kids need to stay away from you when you’re home. You won’t be infectious still. I hope your dh starts to feel better soon.

I think as you've been ill since the 10th, you won't be infectious to your children, as you're on day 16 now?

So glad that you're still doing well, and able to do without oxygen. I wish you luck on your long road to recovery and I hope your DH gets well soon. 💐

@dappledsunshine

Yes *@Yohoheaveho* exactly that.

Oh I didn't know it was the same kind of steroids that athletes use! I wonder if you can run faster after having them😁

@Stillfunny

Sorry to hear about your situation now. That must be so disappointing for you and your DH . The fact that you are so fed up is a good sign , if you were still very ill, you would not care about or notice anything. If you look back at your original post , you will see how far you have come.

Hospitals are so busy now , it is extremely difficult for anyone who has any disability at all. Unless they have someone to advocate for them, they often get lost in the system. Especially now as they can no longer have visitors.
I now have an elderly relative living with me . She has very limited sight and is registered blind. She had been admitted to hospital to monitor blood pressure . Whilst there, she acquired hospital pneumonia and had oxygen .I was able to visit her and she was obviously becoming very weak. Turns out that she was not eating or drinking. Staff would bring trays but she was unable to see well enough to feed herself and was too disoriented to be able to ask any passing staff for help. Then her false bottom denture was lost , really limiting what she could eat when I was going to feed her.When she recovered from pneumonia and needed no further medical intervention , I made the decision to take her home with me. A care package would have taken two weeks to sort out and I felt it was too long to leave her there.
It took quite a while to build her up . I also organises new dentures . But she recovered and yesterday ate her Xmas dinner with a glass of wine.
It seems frightening to think that she was being dangerously ill merely because of lack of basic care regarding food and drink.

You are doing a wonderful thing for your relative. 💕💕

It looks as if I’m going home this afternoon. My immense relief is now clouded by concern. My DH is really poorly now - not hospital requiring treatment I’ll - but enough to totally knock him out. He is younger and much fitter than I am.

We are going to isolate indifferent rooms.

I do t know what to make of the kids. Eldest will be picking me up from the hospital. All3 are now very twitchy and concerned. Not for themselves, but for me andDH.

Such a frightening time for them all.

And there is something really odd going on. I’m looking at myself in the mirror and I can’t recognise myself in that image. For sure, I’ve lost weight in my face. But it’s as if something has shifted. Is this the crazies? My head does feel like it has a heavy brick in it.

I probably just need a good shower and a hair wash.

I was ill for a few months a couple of years ago and I sort of had to remember myself afterwards, if you see what I mean. Possibly about making the transition back to being a person instead of a patient... maybe this rings a bell?

The second bit of this post, which has disappeared, is to say how delighted I am that you're going home. Please take it slowly and get strong. All the best.

Don't forget that if you have concerns, get him to speak to the GP.

I'm so pleased that you are able to head homewards, recovery will be easier when you're in familiar surroundings. I hope your DH turns the corner quickly and you'll all be recovering well by next week. x

Totally normal for dexamethasone to make you a bit ragey.

DS2 has had it a couple of times for croup and it makes him 100mph and absolutely ravenous!

Sorry, I didnt mean to frighten you. You'll be fine, I doubt either you or your dh will feel much up to eating, although I came out still on steroids for 4 weeks so still has a ridiculous hunger, but I just ate crisps and things I could get to easily, not massively healthy, but it was necessary at the time. You will muddle through with whatever is easy, I had lots of soup and funnily enough lots of oven chips, purely because that's what my ds could cook or was eating himself. What I was trying to say was, ask for and accept help, when you have been very sick it takes a long time to recover. Don't go home and think that you can look after everyone because you wont be able to. Be kind to yourself.

Thank you everyone. I’m out of here in 30 mins.

Dustyknickers - one thing all my kids can do is cook very well. DS1 is absolutely brilliant at it - puts me to shame. DD is vegetarian and has a real interest in nutrition. I’ll be well looked after.

I just wanted to give you all, every single one of you who has posted, a big virtual hug. I have no idea how I would have coped without you stepping with me - all of the way. Thank you also so much, from the bottom of my heart.

I’ll take a few days out and then I’ll report back to y0u - I promise.

Xxxxxxxxxxxx

So glad to hear you're off home! Have a lovely rest and a happy New Year x

@LittleSpyintheSky glad your going home
You have been very ill and had lots of treatment, I imagine your sleep deprived.
Keep an eye on the psychological/head stuff and call GP if doesn’t settle.

Oh brilliant OP so pleased to see you get home! Thanks for sharing as you’ve given us a real insight. I wish you a speedy recovery and a bright 2021 and onwards. Will raise a glass to you and your fan tonight.

Family not fan

So glad little I wish you and your dh a speedy recovery

Brilliant news @LittleSpyintheSky take care of yourself, so pleased you're going home - fingers crossed for dh