Still feeling mentally lost after almost 2 yrs

Hello everyone, my name's Nick I am newbie. I went into ICU in May 2015 with escalating breathing diffculties. I spent 2 weeks in an induced coma and then a further 5 weeks conscious in ICU. I had a tracheostomy, dialysis and rhabdomyolysis as well as many other conditions. My partner helped my with my rehab and I was walking again 3 months after leaving hospital. She wrote a very detailed diary of my stay as I remember very little. I have found it very difficult to talk about what I've been through and even though it was almost 2 years ago now it's still with me everyday, physically I'm finding life a struggle, my sleeping is poor at best, it seems like every month my doctor's find new and mysterious things wrong with me. My partner and my kids have been absolutely brilliant and have helped me so much but can't help feeling sort of lost in the world, lonely and separate from them now, I find it difficult to relate and to describe how I feel. I'm not the sort of person who talks about their feelings or goes to support groups as this is not something I've ever done before. I sort of stumbled across this group whilst searching for answers to how I feel. Reading all of your stories and comments has been very emortional but also the support and comment to give each other is really lovely, thank you

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  • Hi Nick,

    What you describe is quite common for many of us ICU survivors, we're so grateful to still be here but are not the person we were before our ICU admission and although our loved ones went through it with us, it was a very different experience for them not knowing if we would survive which for me personally left me with a terrible feeling of guilt of the trauma I had put them through even though I couldn't change anything.

    Were you ever offered a follow up or counseling as it can be very patchy leaving many not offered it lost in a wilderness of wondering will things ever feel better, I was lucky as I have a niece who is an ICU nurse who helped both my wife & myself get the help we desperately needed, I know it can be difficult to open up and talk about how you feel but believe me speaking to other at ICUsteps support groups can really help as they've been through it to and can relate to everything you say and will never judge you, a list of support groups can be found at icusteps.org/support

    Before my illness 6 years ago I would have never have done what I do now by speaking at conferences & study days about my ICU experience, I joke that it's because of the 8 units of blood I received while on dialysis for six weeks fighting pneumonia, severe sepsis & multiple organ failure, I still find it difficult to stand up in front of people and tell them how I nearly died but if it helps them understand the trauma both patients and relatives go through it's worth it.

    I hope things improve for you in the future, my advice would be try and talk about it and don't be afraid to ask for help, I know it's something as men we find hard to do and if you want to PM me I'm always happy to offer advice where I can.

    Bill

  • Hi Bill,

    Thanks for your kind words, yes I was offered counselling but when I finally left hospital I really just needed some time to adjust. I guess talking about what I've been through scares me as it drags back all those emotions which I'm not sure I could handle again.

    It sounds like you've dealt with your health very well, I am encouraged by how you've dealt with it. As I told my son recently what doesnt kill you only makes you stronger

    Nick

  • Hi Nick,

    I can understand how you feel counselling is not for everyone as it can bring up so many raw emotions, I've met people that are 3 or 4 years down the line and still struggle to come to terms with what happened, quite often the question is "why me" I guess it's something we will never have the answer to.

    I'm lucky I have a fantastic wife and family & the bonus of an ICU nurse as a niece (same hospital) that help me through some of the darkest days I've ever experienced and it probably took me 2 years to come to terms with the fact that life would never be as it was before my illness, but as you say what doesn't kill you makes you stronger and there are a lot of us here in the community to prove that's true,

    Keep posting your thoughts as we're all here to offer our support.

    Bill

  • Hi Nick & welcome!

    So sorry to hear about your illness we are a unique bunch aren't we! I can understand everything you. Felt & are still feeling, I am only just a year on & go from feeling normal to lost & the detachment has been a massive problem for me. I hope you find some comfort & support from this group sun is shining today yay xxxx

  • Hi Sarah,

    Thanks, yes you're quite right we certainly are unique lot. I have my good days and bad, I can never tell why it changes from day to day and getting upset at silly things is just part of the norm for me.

    This group is great, so many of us seem to be on this journey and reading other peoples stories really helps

    Nick

  • Hi Nick , It is really good to talk to people that understand , I went to a follow up meeting at the ICU Unit one year after I was in a coma with pneumonia and Swine Flu , It filled in a lot of blanks for me and to tell my story to someone he didn't laugh at me telling them about robot nurses and all the other bizarre happenings did really help me. We are not mad or crazy people just people who have been very ill. Talking about it is good if you can find someone who does not judge and understands you like we all would,

  • Hi Jason,

    Thanks, yes I know I need to talk it out, but I'm not ready for that yet. I'm laughing at your comments about robot nurses, I had some similar hallucinations which were really quite bizarre :)

    Nick

  • WOW what an amazing experience you had Nick, I feel for you, my sleep pattern is total erratic and sleeping tablets (prescribed) whilst I was in hospital don't seem to help me anymore. I regularly become low and very bitter about my initial first operation, however my wonderful family who visited me regularly are my rock as is my partner all of whom I love dearly.

    My partner kept a dairy too.

  • Hi there,

    Oh the sleep ! How I miss a proper, I mean proper nights sleep. I haven't had an uninterrupted nights sleep for years. It drives me crazy sometimes, I tried sleeping tablets they either didnt help at all or I would be a walking zombie the next day and complete uncapable of doing anything.

    I understand feeling bitter, I used to be much stronger and now I can't get much done without feeling tired, I hate not having the energy.

    Nick

  • Hi Nick, you have been through a bad time and I hope you found the comments here helpful.

    Talking about one's ICU experience to an independent person can be beneficial. However, if you are considering a course of counselling, may I mention a couple of reservations:

    I think you have to feel 'ready'. Proper counselling can bring out a lot of emotion and may, temporarily, de-stabilise you. Personally, I waited 4 years after my ICU experience, before starting counselling.

    Being an ICU patient is such a powerful, unusual, and frightening experience, and I've found a lot of my friends (kind and intelligent people) just haven't a clue about what it involved and felt like. I even suspect that some just don't want to know. As it's so far outside most people's experience, you will need to find a counsellor who can tune in to your story and respond appropriately. It's important that you choose someone you can trust, and who is well qualified.

    You don't want to be fobbed off with someone who has done a on-line 10 week course, for example. This is serious stuff. I'm sorry to say I didn't trust my local NHS to find a counsellor who could help me, so I went private, looking up the person's qualifications, and asking for recommendations from a couple of friends who are psychologists. It was worth the money.

  • Thanks thats really good advice, I agree about getting the right person and feeling ready, which unfortunately I don't think I am yet

  • best wishes Nick. I think you'll know when you are ready for counselling. It may be a while yet, don't punish yourself.

  • I totally agree with you Muncii .I think it takes a specialist type of counselling for ICU trauma.My husband has family members who don't seem to want to know about how he's coping post ICU .Since my husbands accidents it's shown me that a lot of people are very kind and try to understand and some just are to self absorbed to make an effort .

  • Interesting comments Kasabian re family members and friends who seem unable to show appropriate interest and concern (they might have done so at first but fail to keep it up) and who appear to have no empathy about what the patient and loved ones are going through after the ICU event. I've come to the conclusion that some of my friends - who I thought knew better- are unable to ask the right questions/make the right comments, make any necessary allowances, perhaps because the whole thing is too threatening for them. Maybe it reminds them of their own mortality and frailty.

    I remember going round Kew Gardens in London a year after my ICU experience with a long term friend (a counsellor!) who positively raced round and I couldn't keep up with her, being rather slow, dizzy, and breathless. I had warned her that I'd need to take time and have plenty of rest stops but she couldn't take it on board. I found it hurtful and although we are still in touch, I haven't forgotten.

    And re (the patient) feeling guilty: I think this might be 'normal' too, judging from comments here. Sufferers have posted that they still feel guilty, even a long time after the event, for having put their loved ones through the trauma. I know I still feel guilty for having put my poor daughter through the trauma of being told I might not survive, daily visits to ICU, etc etc. I know it's not rational, the fact that I got ill was not my 'fault', but nevertheless the feeling remains.

    Recovery can be hard, painstaking work, but it sounds as though you and your husband are doing great. Best wishes

  • It was interesting to read your story. I was in an induced coma for 4 days nearly 2 years ago with septic shock. Still not back to normal. I am always tired and cannot walk any distance. I suffer from anxiety and have debilitating episodes of this. All my GP says it takes time! I also have trouble sleeping. When I go to bed I seem to relive that traumatic time. Is this normal? Like you, reading these posts lets me know I'm not going mad lol. Take care of yourself and I hope you recover soon.

  • Thanks Ruth,

    Yes I too lie awake reliving events wondering why, how, what if etc My body is exhausted but my minds racing. I think this is normal and seems to happen to a lot of people here. Thanks for your kind words

    Nick

  • You are normal Nick,my husband does exactly the same .He relives his motorbike accident.I have been told just the whole shock to your system form ICU stay on top of whatever injury/illness someone has takes along time to get your mind and body back in sync.Be kind to yourself and don't expect too much of yourself.I constantly tell me husband time is a great healer.I know it won't ever be the same but as my husbands nurse said recently take baby steps.

  • Ruth, I am sorry you are suffering anxiety, and I assume this was a direct result of your experience of being in a coma. On one level, your GP is correct, and perhaps you - we- need to be kind to ourselves and be patient. On the other hand, when it is interfering to a significant, negative, extent in daily life, I think it's right to want to look for solutions. I've said before here, that I see no problem in taking medication to help with sleep problems, or indeed medication to help with anxiety, but I know some people are averse to this.

    It doesn't mean you are 'mad'. There's no doubt that what we have been through in ICU is extreme, physically, mentally, and emotionally.

    It can be a terrible shock to one's identity and sense of self. Perhaps the task is about regaining some sense of normality and self-confidence. If medication helps, use it : It needn't be permanent.

    Once you feel more stable, it might be worth thinking about counselling. In my own experience of discussions with a good counsellor, I was able to process and digest the ICU experience much more effectively than I could in my own mind, constantly turning, churning, things over and over.

    Best wishes

  • Hello. My name is Lindsey. Exactly same thing happened to me I had to learn to walk again but was on lIfe support for such a long time. I still suffer with what I feel I saw or were I feel my body went at the time I was on ventalator. My heart goes out to you and remember y arnt alone some people understand everything xx lindsey

  • Hi Nick,

    You've been through a difficult ordeal. I understand that you aren't the same person as before. It has taken years for me get stronger and learn to live and love my new self. There is so much to process. I wish you all the best on your journey. If you survived ICU, you can survive the changes. Take it slowly and be kind to yourself.

    Just a thought: I got a dog, Grady, about six months after my hospitalization. I was forced to walk him which involved seeing other walkers who commented on how cute my dog was which led to questions. The time I spent on errands doubled. Slowly, I was able to be in the world again, interacting with people. Having Grady has made a huge difference in my recovery.

    Mama Ellen

    Onward!

  • Hi Nick,My husband was in a serious motorbike accident last June,he was in an induced coma for three weeks and spent five weeks in ICU.He is ten months on now and still feels a constant fatigue from his ICU stay.Hes sustained life changing injury which has been very difficult for us both to come to terms with.I don't know you but I'm glad you have made the first step by posting your thoughts on here.My hubby finds it all very hard to talk about too ,as do I..We are on a long journey together but it's tough.He too feels like he's lost .When he's having a low day and I say look how far you have come in ten months.I would be lost without this group.No one understands how being in ICU or having a loved one who has been very ill in ICUhas such a profound effect on our lives.Time passes and to the outside world people don't see what a huge effect it has on your life.I have been left traumatised by my husbands accident and he feels very guilty and a burden.He will never be that to me.Please keep posting on this group if it helps you.We are all here for each other.Take care.x

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