Please tell me I’m not alone

[Pandysgirls]

4 weeks ago tomorrow my husband was taken into hospital with breathing difficulties , covid19 . 4 weeks has flown in a blur of daily updates but it’s always 3 steps forward 2 back .he seems to have healed many problems and then there’s always something else . Today just as we thought he was waking he had a problem and now we’ve found out he’s had a stroke . If I list everything that he’s been through I would be here all night . Please if there’s anybody out there that can give me any hope , or just help me to believe I’m not alone , anything I’m just exhausted from this roller coaster

[Sepsur]

My wife could swap stories with you / one of the few things I didn’t have was a stroke.

You are certainly not alone - if you read some of the pinned posts on this site - you’ll see what I mean & all of the posts from so many people at present - critical care is an awful rollercoaster - I hope you get better news tomorrow.

[Pandysgirls in reply to Sepsur]

Thank you so much for your reply , I do try to take the positive out of every update but the knock backs just tiring me out . I can’t sleep and find myself analysing everything . I know that’s bad just don’t seem to be able to stop myself . But I thank you for talking to me , and for your good wishes x

[Sepsur in reply to Pandysgirls]

What is important for all the relatives & friends with loved ones in ICU to appreciate is that you have to look after yourself now, try and get as much rest, regular exercise & eat well because whilst your loved one is in an induced coma, he/she will have the best care possible under the circumstances. You will need all your emotional, mental & physical energy for when your loved one wakes up & for the slog of rehabilitation.

Critical care changes your life for ever, not always in a bad way, but it is changed.

There are quite a few pdfs on this link that you may find useful.

icustepschester.org/informa...

[KayleighMicMic in reply to Pandysgirls]

Please read my sisters posts BigYellow - her husband (My brother-in-law) has had a stroke. My sister is also like you and she analyses everything. I think she will be a big help to you. Big love xxxx

[KayleighMicMic in reply to KayleighMicMic]

Sorry that message was meant to be for Pandysgirls

[Pandysgirls in reply to KayleighMicMic]

Thank you I did and your right I think we are very alike x

[Riri04]

Your not alone, my partner has hypoxic brain injury and he’s been through hell and back with various infections. One day we thought he was getting better and the next he’s deteriorating, just take each day as it goes and know he’s come this far so surely he has the strength t recover, just needs time

[Pandysgirls in reply to Riri04]

This virus is relentless , and I thank you so much for replying to me when you have so much on your plate . My prayers and hopes go to you and your partner

Thank you

[El_Violet]

Keep strong and keep the faith. Also don’t forget to eat, drink water and take care of yourself, take deep breaths and feel the ground under your feet. You’re not alone!

[Pandysgirls]

Some days I can keep the faith , others I can’t stop crying can’t sleep just feel like I’m the only one going through this , but I know I’m not . I pray for a miracle for everyone going through this x

[KayleighMicMic in reply to Pandysgirls]

I replied a minute ago but I think I replied to the wrong person so go through this weed carefully and you will see what I said. I recognise absolutely everything you are saying. My sister has been through every step you are talking about. Please hang in there. I feel for you. Xxxxx

[KayleighMicMic in reply to Pandysgirls]

Hahaha I have just scrolled down to the bottom of this chat and seen but my sister has already replied! Xxx

[Rene78]

You are certainly not alone. My husband suffered a stroke two years ago and it seemed that everything that could go wrong along the road to recovery did. I’m happy to say that we got through it after months in hospital and rehab. It’s difficult at times but faith can move mountains. Stay strong.

[Bigyellow]

You are not alone my husband was put on a ventilator 6 weeks ago.We rode the same rollercoaster and were told he had a stroke. then he didn't wake from sedation and we were told we would be moving to end of life care. he is awake now profoundly weak but weaning off the ventilator with a trachaeostomy.

We felt totally alone and have benefitted so much from finding this site.The unique situation Covid families are in going through this in lockdown is going to yield much psychological distress in the future.I hope that some of us will forge friendships maybe away from the web so that we can support each other.

[Sepsur in reply to Bigyellow]

Too right. There are a network of meetings across the country called ICUsteps - look on this link for their whereabouts.

icusteps.org/support

[Bigyellow in reply to Sepsur]

Hi Sepsur I was thinking it may be good to start some new Covid families support groups as our experience with lock down and visiting bans is quite unique. I live in the North West South of Manchester and would be happy to start something here. Im just not sure what part of the ICU steps site to post about it.

[Sepsur in reply to Bigyellow]

Why not post a message asking if people would like a meeting?

[Sepsur in reply to Bigyellow]

Have a look at another reply to this post by @AKAICUSurvivor - (admin)

[Sepsur in reply to Bigyellow]

Good morning - I hope your husband is still improving well.

I would suggest that you private message people to see if they are interested - meetings are easy with things like google meet, zoom etc etc geography is no longer an issue.

Our group in Cheshire runs a weekly Zoom meeting for families & patients - we are only just starting to get Covid patients & their loved ones - so we aren’t as specific as you would like.

You would be welcome to join us to see how effective a zoom meeting can be & Im very willing to show you how to set up a meeting for your needs. You may find in the long run that all of your ICU experiences become less significant as you all adapt to the new normal. I know it has taken my wife 4yrs to ‘get over’ her experience - although hers was compounded with nursing both of her dying parents at the time too.

We are amazingly resilient too, we humans.

[Pandysgirls in reply to Bigyellow]

I feel embarrassed that I’m a crying mess half the time and you’ve all been going through this longer than me . Thank you for your kind words , I hope and pray that you have a light at the end of the tunnel xx

[HopefulA in reply to Bigyellow]

I'm so pleased to hear of the progress your husband has made and may it continue. Your journey gives me hope for my dad and I hope we can all get postive news about our loved ones to share xx

[AKAICUsurvivor]

You are certainly not alone - as you have alluded to - you as a very specific group of families will have experienced any critical care in a very different way - no matter what condition your loved one has/had.

My experience of the NHS is that once you have discharged from hospital - there is little conventional support. We were extremely lucky that we had a weekly physio gym class put on by the hospital ( about 4wksafter discharge)My physiotherapist were brilliant. I retrieved my strength & independence in this class.

8 weeks after that we all ( from the gym class) set up a family support group. A year later, we joined ICUsteps, a year after that we became our own charity, run by volunteers & made up of family, expatients & NHS staff.

At the beginning of lockdown ( for me it was 16/03/20) we realised we couldn’t carry on much of what we do - so we set up a weekly ZOOM meeting. If any would like to join - please email me on

chair@[e-mail]

[Marcita]

Surely not alone. Covid is giving us the worst days of our lives... It's such a bumpy road.

Sending you a virtual hug.

[Pandysgirls]

Thank you xxx

[Taciab2020]

You are definitely not alone. Unfortunately bad things can happen to us, but there is a real God, our Heavenly Father, the Creator of the universe who works in a favor. I will pray for your husband. There’s always hope even in the most difficult scenarios. My brother in law nearly died with sepsis. Everyday we went through was like a battle we had to fight, as everyday new problems emerged. But he is now at home slowly recovering, and we know God is responsible for this miracle. Praying right now for your husband.

[Pandysgirls in reply to Taciab2020]

Thank you so much x

[royay7]

My fiancé was in the hospital for one month and on the ventilator for 17days. I got sick with the virus but it was a mild to moderate case and I didn’t need to go to the hospital. I did have to stay quarantined and all I could get was text updates daily. One day he was better and the next worse. I have to admit I had a old prescription of Xanax that helped save my sanity somewhat. But he made it! Putting him in the prone position helped a lot and a drug that helped his immune system not to over respond to the pneumonia also helped. And they gave him a drug called ‘Mucamist” to help clear out the fluid and damaged lung cells from his lungs seem to help,also. And I truly feel like we were blessed with a miracle. I must say that when I picked him from the hospital,I was a shocked. He had lost a lot of weight and muscle mass and could barely walk. Finding rehab care because places are reluctant to take in Covid patients even though they are not still contagious is next to impossible where I live.

He is getting better everyday and has a good appetite. We both are dealing with emotional issues from the trauma this horrible virus has caused. But each day gets better. This is a hard time especially if you have someone in icu with the virus. But people are surviving and coming home. I prayed more than I ever have in my life and I tried with everything to stay positive even though in the middle of the night the negative thoughts would creep in. I totally understand what your going through and I promise there is hope and you are not ALONE! Praying for your husband, you and your family!

[Rgsable in reply to royay7]

Thank you for your prayers. I pray that God will help and hear all of us and miracles will happen.

[Sepsur in reply to royay7]

Check out Wes’s workout video - specifically for early rehab. He will be releasing two further videos and we are just twisting his arm to do a live zoom session every Monday morning - email for details 😊

icustepschester.org/exercis...

[Pandysgirls]

Thank you so much I hope that life is kind to you both now x