Struggling!

Struggling!

Dear all, I can't believe it's nearly a year since I became unwell, after a 3 day bout of flu, I ended up intubated in intensive care, having developed Pnemonia & sepsis.

Luckily I recovered physically but far from mentally, I am grateful I did survive but am knowhere near over the horrors that happened during & after that time, in fact I am struggling more than ever, I don't feel that I will ever be back to the old me & I hate that.

I don't tell anyone as I am sure they are all bored & to add insult to injury I lost most of my hair 4mths after & ashamed to admit I am vain lol so that was a lesson learnt! It's growing back but I still feel like golum wish I could talk to people who understand x

8 Replies

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  • Hi, I don't think any of us ever recover fully psychologically which is something only people that are unfortunate enough to join the ICU patients club that no one would want to join given a choice, can really understand.

    It's six years ago for me now but I can remember it as clear as yesterday, like you I had double pneumonia & severe sepsis and every time I get a bad cold it's always in the back of my mind that it will happen again, I found the first year the most difficult to deal with as my whole life was turned on it's head, having to sell my carpentry & joinery business I loved just to survive broke my heart, leading to some of my darkest days with my wife and family taking most of the flak, thankfully they got me through those dark days, but it was a chance meeting at my second follow up that changed everything the nurse asked me if I would speak to a ICU patient who had been in ICU for 2 months (I was in there 3 months) and was struggling badly, I of course said yes knowing what it felt like thinking you would never leave, we spoke on several occasions and even planned to compere notes over a beer when he was discharged, unfortunately he had a relapse and past away making me realise how incredibly lucky I was to survive and should use my ICU experience to give something back and help others, it led to me setting up a local support group in 2012 with the help from my wonderful wife and my niece who is an ICU nurse.

    We went on to become part of ICUsteps in late 2012 and I was very fortunate to become a trustee of the main charity in 2013, since then I've met so many inspiring people and helped others coming to terms with their traumatic experience, ICUsteps is run completely by volunteers from our CEO down to the person that makes the tea at our local support groups.

    Local support groups are a great way to meet other that understand what you've been through as they've been through it to and with a healthcare professional there to answer any medical questions, a list of our growing number of local support groups can be found at icusteps.org/support

    Best wishes in your continued recovery,

    Bill

  • I think you need to be kinder to yourself Sarah! you are not vain, in wanting your hair to grow back (it will) and it's natural to worry about your appearance.

    I think it's inevitable that we (I mean people who have been in ICU) will want to compare our lives, and our selves, 'before' and 'after' the terrible trauma.

    Mentally and emotionally digesting and 'processing' all that happened - especially if it happened quickly, as in your case (mine too) - is difficult and I don't think it proceeds in an orderly fashion. eg one step forward and two back.

    Not telling other people how you feel - I think we call all relate to that. Personally, I've not wanted to bore, or upset, family and friends, and that's why I had some counselling in 2015 - four years after my ICU experience. I had to wait that long before I felt ready. Talking to someone completely independent was very valuable.

    I've also had a sense, from some friends, that they have not got a clue as to how dramatic and life threatening my ICU experience was, and the impact it has had. It's almost as if our vulnerability (you became very ill, very quickly - me too) is too threatening for them.

    I agree with Bill, that it's doubtful any of us recover fully, psychologically, but we can recover to a 'good enough' level, in our daily lives. At the same time, be aware of moments when the full force of the experience comes back and hits you full on. Although hopefully, those moments become less frequent, and less distressing, over time.

    Best wishes

  • Hi Sarah

    I can really relate to your experience. This time last year I was in ICU battling sepsis, multi organ failure, pneumonia and bilateral pumonary embolii. My family were told repeatedly to prepare for the worst. A year on I have no stamina, I'm receiving physio and use a stick to walk and for longer distances use a wheelchair. I still suffer from nightmares, lost approx 70%of my hair and my nails continually snap off.

    I agree with the other replies that unlesssyou have experienced ICU it is difficult to understand the effect it has onyour physical and mental health. I thinksome of our ongoing difficulties are probably related to a lack of proper joined up care and support once we left ICU and returned home. At the beginning of 2017 I started to journal so that I could chart my recovery journey. I find if I get my thoughts down on paper it helps. Im also being kind to myself and focusing on what I can do rather than what I cant. I live in Scotland and there is nomsupport group near me but if there was I would attend.

    Apologies for not having any answers for you but perhaps it helps to know that it is not unusual to be stillmhaving difficulties a year down the line.Sending healing thoughts

  • Hi Sarah, take heart you are not alone as an ITU survivor I arrived home unable to walk and shock a couple of weeks later my hair also started falling out, my nails became totally wrecked. So this is all normal for people like us. I am told it will improve given time but the memories and the before person and the after person seem to become two different people. I'm only 2yrs in my recovery and often hope I'll become like my old self but I'm beginning to think I wont and that I think is not surprising really. But my hair has recovered. Happy thoughts sending your way take care

  • Go back to the Hospital and have a word with a consultant on ICU it sounds like you have PTSD its quite common after ICU they will ask you some simple questions to determine if you have it and then refer you to the specialists who can help you.

  • Hi Sarah, I visited the ICU a few months after my stay in hospital. I contacted the secretary and she arranged it with the outreach nurses. It was a very emotional experience, but very helpful to me and my wife and sister, who came along with me. I met some of the nurses involved in my care, I couldn't remember them but so wanted to meet them and thank them. Did you have a diary? The nurses kept a daily diary of my progress in ICU, I wrote down all their names from the diary and some of them were on duty the day I visited ICU. So emotional, but so helpful for me.

    It was followed up 12 months later with another visit and a formal assessment of my status by a doctor and nurse. The whole experience was so helpful to me. I hope you find some useful help and advice on this site. Good luck!

  • Hi Sarah. 5 months ago i was in an induced coma for 9 days due to the worst pneumonia that the doctors had apparently seen. They told my family i was the sickest patient in the whole ICU and mind you im only 33 and there were a lot of elderly patient in that ICU.

    I had the worst nightmares/hallucinations/delirium i have ever encountered. People who have not experienced it will not understand. Its horrifying. I too like you, feel i am not the same person as i was before. I am much more depressed and afraid to experience things as i am worried i will have to go through that again. I understand exactly what your going through. You're not alone.

  • Hi Sarah x Of course you must feel awful but remember you real friends and family will be there for you , dont get depressed about it and set yourself goals to reach and finally it will all come back to you , positive attracts positive x

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