can’t get this out of my head

I’m Mark, I’m 49 in 2017 I underwent surgery. I ended up in intensive care, I suffered sepsis, pneumonia, multi organ failure and was put in an induced coma. My Glasgow coma scale score was 3, my family were told I was unlikely to survive. I did survive and the intensive care staff told me its a miracle I did. Prior to this I was very outgoing. Since this event I’ve changed a lot. I worry my life expectancy has been shortened etc. I now have a fear of hospitals, doctors etc. my health today is pretty good, however I’ve now got plural thickening of my lungs which causes pains. I was always a fit and healthy person prior to 2017. Now my energy levels are so low. I’m struggling to put this event behind me. I’ve had counselling which did help a bit. I just can’t seem to stop thinking about this. Maybe someone has experienced something similar and can advise me of how to deal with this. Thank you

[Sepsur]

would you say that you were experiencing fatigue, chronic fatigue?

[Lux95]

ICU, sedation and barely surviving does seem to change many of us. I used to have a quieter personality, but now get frustrated easily to the point of having to avoid stressful situations as much as possible. Fatigue comes much more quickly and finding motivation to do or enjoy anything is difficult. I think all of this is somewhat common.

As far as how to handle it all, maybe just knowing we aren't alone is a good first step. Accepting a "new normal" seems to be the next, as far as I can tell. My goal is to figure out how to make the most of life as it is now and not expect to return to how life was before. I think I'll always fear the next cold or flu, being in crowds, and the possibility of a shorter lifespan. That's just the way it is. So I try to enjoy what I have here and now - faith, family and friends. I don't know if that helps, but it's all I know at this point (just over a year since my illness).

[Hidden in reply to Lux95]

thank you very much for the reply. Yes accepting the new normal is something I do try to do. I also fear catching the flu etc. I appreciate your reply and wish you all the very best for your future. Best regards, Mark

[FamilyHistorian]

Hello Mark,

It’s 3 years since I came just at the beginning of lockdown and because of my vulnerability I became institutionalised in my own home and only know am I going out but there are still places I won’t go.

I had CBT which helped a lot and developed strategies for dealing every day things. I think we all have to resolve our own situation and it really helps talking to people who really understand thus enabling you to get back to what ever the new normality is. I have quite a few hospital app’ts and I am fine about going through the front door but no way will I go to A&E.

Yes I have changed. It’s not my problem it’s others and they need to learn how to cope with. I have goods, bad and really bad days.

I belong to a group that provides various forms of support all on zoom. In particular on a Thursday evening at 730 we hold a drop in.

cc-sn.org/

[Hidden in reply to FamilyHistorian]

thank you very much for the reply, yes I’d be very interested in joining the meeting on zoom. It would be great to chat to like minded people etc. best regards, Mark

[FamilyHistorian in reply to Hidden]

contact [e-mail] for the log in details

[Copse77]

I understand this. Your story reminds me and is similar to my family story in the same time frame and sepsis leading to organ failure when my brother was in his 40s. It came shortly after my fit and healthy husband had a stroke out of the blue at a young age . We were just a few months from that,my husband had to stop driving for a few months while he recovered when my brother became critically Ill out of the blue. I visited my brother every day for 2.5 months while he was in critical care and it was a difficult time for him and his family. I will private message you.

[Back_to_reality]

A few months after I came out of ICU I was asked if I wanted to go back to the hospital to speak with the staff. I was quite keen to do so, so I went back and talked about some of the things I experienced. It was interesting to hear the doctor talk about it in a very scientific way. Of course, having no personal experience of it, he could only talk about trauma and PTSD but had no stories of personal anecdotes. Sympathy, maybe. Empathy, no.

I asked if I could see the ICU. I had very distorted memories of it prior to being transferred to the neurology ward. It was quite reassuring to see it. There was some other poor soul in my bed so obviously I couldn't go all the way in; just on the other side of the observation glass, in the area where the staff sit. But for a moment, I really expected him to say to me that I was still lying in the bed and had hallucinated the previous few weeks. Really freaked me out. But the moment passed. I was happy to escape the hospital though and pleased nobody tried to stop me, as they had done when I was in the coma.

I had a few moments over the next few months when I thought I might still be there. And yes, to the point, the experience has changed me. I still worry about things too much, as I've always done, but I do remember how close I was to death and it gives me a lot of perspective. I do have days where I'm thoroughly miserable and I try to snap out of it. It's not easy though.

Like others, at first I was scared to go into crowds, but now I'm more relaxed about it. Yeah, I nearly died, but I didn't. I focus more on getting the most out of life, particularly for the sake of my kids. I feel quite defiant.

Sorry if some of this sounds a bit arrogant, but I find it's a strategy that works: arrogance in the face of adversity. I'm determined not to let it hold me back. So far it's working. Mostly.

[Lux95 in reply to Back_to_reality]

It doesn't sound arrogant at all. It sounds familiar. Defiant is a good word for it. I spent the first 10 months (after I could walk and drive again) trying to resume a normal life and normal work without realizing that wasn't even possible. I now think I was and probably still am in survival mode. I have no doubt that level of physical and mental strain triggers that instinct out of necessity. Others may see it as stubborn, hard to get along with, or even arrogant; but for us, it is just a way to live and cope, to some degree at least.

[HorseMum]

I can totally relate. I think that having been that close to death makes us all reconsider our mortality.I felt exactly the same after I nearly died, and worried about the statistics of ICU survival in the first year. The numbers are much better for 5 year survival though, and you have made it past that! I have scarring in my lung and bronchiectasis, which *will* shorten my life expectancy. It's made me feel that I need to live my life to the fullest now. I'm 64 so I'm at the stage where I'm aware that the time I have is finite! I see the grownup kids more, have more family gatherings and outings and definitely tell my husband and kids more that I love them.

I have also experienced a decline in self confidence. I have cognitive impairment which makes me feel so stupid, and I am so aware of my slow mental processing, especially when I am under pressure or fatigued, which is a lot! Something as simple as talking to a stranger on the phone or trying to pay at a checkout puts me under pressure. I get anxious, which slows my thoughts and actions further.

It's difficult to come to accept these things, but knowing that I am not alone in experiencing them has helped me. As Sepsur sepsiscarol e (sorry I tagged sepsiscarol by mistake and I can't work out how to remove or delete it - case in point!)

As Sepsur reminded me in my recent post, how would you talk to a friend who had been through what you have? Small sentence that made a difference to me - thanks Sepsur 😉