My our Journey so far.

[BigH63]

A BIG Hi to you all.

I’d like to introduce myself.

My nick name is Big H and my journey started in 2021 with a covid pneumonia.

I was in a pub when we were allowed to go out, it’s the only place I had attended before contracting Covid Pneumonia. I just remember it was like having the worse flu and cold, and not able to pay for the heating most probably didn’t help matters it got worse but I refused to let my partner call 111 to get help, until I couldn’t walk to out bathroom in the end. I then spent 2 plus weeks in isolation ward and then sent home, when really I could not walk more than 20 meters without having to collapse on the bed

I tried in vain to get walking again, I ask my partner to take me to the seaside to just walk a different scenery, two weeks from discharge , I set myself a goal to walk three bench away and back, unfortunately this turned into three out and collapsed on the bench we went home and again my partner was eventually allowed to call 111 this was Christmas Day, diagnosis bilateral embolisms on the saddles of the lung ( not a good prognosis I was told) I was eventually discharged end of first week of January the following year This left me with lung scaring they call ground glass Then spent the rest of 2022 trying to get fit. Managed to get to a 5 Mile walk and 25 mile cycle ride and 2km swims 3x a week. Very happy.

On Christmas Day that year we went to the sea and for our normal swim, both of us are seasoned Cold water swimmers. Anyway we swam had a nice time and came home. Unbeknown to us our local water company had dumped sewage into the water that day. We stayed at home not going out for anything for the next two weeks and on the 6th of Jan 2023 I started going down hill fast and on the 8th Jan I was to the point of being delirious and I don’t remember even leaving my bedroom, then all I can remember is fleeting confused moments of going through the hospital, this was my going to ICU, then nothing fir nearly a month.

I had Sepsis pneumonia/ Strep A / Collapsed left lung / Acute Kidney Injury and Dialysis/ Multi Organ Failure / Heart Attack once or twice I’m not sure yet / which has left me with Atrial fibrillation., I was also inline to have ECMO apparently it was discussed with I think St Thomas’s London but I was to ill to be transferred. Plus suspected brain damage.

It was unbeknown to me but I was not suspected to last a day or two, my whole family were asked to come and say goodbye as I was not going to make it pass the next day.

So moving forward after all the fantastic work the ICU team did I go home 6 weeks later. Then as you all know the struggle has just started.

Long and short of it from then like all of us ICU survivors is Delirium / Nightmares / fatigue/ memory loss / Depression/Anxiety / Anger/ and the list goes on.

So 9 months later I can’t come to terms with the near death experience and trying to workout what my purpose is in life now as I can’t see things getting any better. Not being able to do anything like the things I used to do physically or mentally, I was fit before this to a greater extent after the year before’s illnesses I was walking miles, cycling 25 mile rides, and swimming 5 klms a week , still have some of the above issues anger, frustration, occasional nightmares, anxiety, and depression to a lesser degree

I’m lucky I have a wonderful partner whom also went in to hospital two days after me with Sepsis pneumonia on a ward and came out 10 days later. So the sick looking after the sick and no help.

So I will post again as there is so much I need to say and also share to see what help is out there.

so thanks for reading any help would be appreciated.

Thanks

Big H

🤷‍♂️

[Sepsur]

There is no denying that life changes after ICU - that doesn’t mean everyone is going to have an ‘on-the-road-to-Damascus’ moment but it does mean that we have to seriously reevaluate how we live life. You may find many who do not understand ( or chose to try and understand) how & why you have altered, so it is important to adapt in all sorts of ways.

I improve incrementally everyday - so please do not think there is a ceiling to improvement - physically, mentally & emotionally. That is not to say that some people are damaged by the same process that kept them alive and in such a way that there is less obvious improvement & their mobility & capabilities are limited. I still maintain that you can improve years after icu - in my case it’s 7.5 yrs.

Reason for life - well it’s better than the alternative isn’t it? 😬😃

[BigH63 in reply to Sepsur]

Thanks Sepsur.

I appreciate your candour, and see what you’re getting at. As I have read other posts and realise that I’m not on my own in the way I feel is helping. And people like you that are so far down the road and still improving is a help. I know this post ICU road is long and slowly I will hopefully come to terms with this life I’m living. Thanks fir you thoughts.

I just can’t see my purpose not necessarily why I am alive or not.

[Sepsur in reply to BigH63]

I threw myself into cc-sn.org to start - then I started to rebuild my work/craft.

😊 - Purpose will reveal itself ( I hope).

[BigH63 in reply to Sepsur]

Thank you fir the link I’ve added to my favourites.

Yes I hope purpose comes back as I have two grown up children and four grandchildren.

Thanks again

[Lux95]

You really have been through a rough time with two admissions! For me it was a month with multiple types of pneumonia January to February of 2022. Purpose is certainly a question that seems to take on a different meaning for us as survivors. Over the last year and a half I've come to slowly realize that life does need to change, at least for the first few years. I tried going back to work as soon as I could drive, but that was a mistake. I just can't handle stress well enough anymore. I've taken up a new hobby that has helped me refocus.

But I have to admit, I am still struggling with regaining a sense of ambition, enthusiasm and purpose. I wish I had a more helpful answer, but all I can say is, as you know already, you certainly are not alone. I do sometimes wish others (family, friends, physicians) could understand what we are left facing better, but it is what it is.

[BigH63 in reply to Lux95]

Hi Lux95

Thank you for replying. The more I read the more I realise that it’s more than a marathon, like most of us I assume are told it can take up to 18montgs , but reading this is a starting point not an end point.

I agree with you about family friends etc, my family not my partner all seem to think that I should be grateful to be alive and just get on with life🤷‍♂️ That thought process is fine if I had broken my leg or arm etc but we have been in a ward where the only outcome are you come out or you don’t and that’s the very short answer.

I wish they would get more involved in reading about this rather than thinking I’m being awkward, stubborn and just wallowing in self pity.

Anyway let’s hope life improves and we find a way to cope for us all.

Thanks again 🤞

[ForMyPapa]

Hello, Big H

I am so sorry to hear what you and your partner had to go through. I understand that leaving the hospital is not the end to the journey.

I know it is really hard to believe that things will change and there will be some moments that you feel well and happy. So for now, I will believe that for you. I will hold the faith.

Please keep posting and let us know how you are doing.

[Gooddaysunshine]

I would say do not start looking for a role in life, or a new identity, or at least not yet. Cliched I know, but perhaps take one day at a time.

After 3 months in ICU, coma, near-death etc, I came home 2.5 years ago, and I still do not know my role in life, but does that really matter I wonder?

I used to be, quote, "a high functioning individual", with a stressful commute, 10 hour pressurised shifts, idiotic meetings, work-related socialising after work, race back home to spend limited time with family, short sleep, and off again, like the hamster in the wheel.

The positives of what has happened means I spend more time with my family, I am calmer and more philosphical, and have time to catch up on all those interesting books, films, etc I never thought I would have time to enjoy.

Maybe something will emerge from out of the mist as to the forward, but as for now I am happy to live in the moment. Good luck with it all, you have been through a lot, so do not put added pressure on yourself.