How did you cope waiting to find out what normal would be like for you?

I'm trying to stay positive and be thankful I'm alive but the waiting to see what "normal" looks like is a little frustrating at the moment.

I currently have some short term memory issues, cognitive issues, vertigo that is apparently from both my neck and vestibular system (due to my time in ICU), am on a formal walking programme (10 minutes a day - which seems like a waste of the person who has to accompany me's time),I'm not cleared to drive yet, my voice still plays up and my beautiful long thick hair has fallen out in handfuls and I had to cut it into a bob cut that is very thin, I have limited core and back muscles and can't do any exercises because of my hernia.

How did you all cope with the changes and the waiting to find out what reality would be like?

7 Replies

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  • Hi Helen,

    I remember that thought so well, "will life ever be normal again" life was so difficult when I first got home after three and a half months (3 months in ICU, 2 weeks on general ward) at first I felt so pleased to be home but after a few weeks things began to change, the reality of what I had been through suddenly hit me, I slipped into a very dark place believing I was a burden on my family and they would have been better off if I hadn't survived, I'm ashamed to say I was the worst person to live with for a few months, fortunately I had a follow up appointment with my ICU consultant who got me the psychological help both my wife and myself needed. the turning point for me was at another follow up clinic when the nurse asked me if I would speak to another ICU patient who was having a difficult time, speaking to him made me realize I was not alone with what I had been through, I visited him several times planning to have a drink together when he got out, but unfortunately he never made it.

    Meeting that patient inspired me to help start a local support group for ex-ICU patients back in early 2012 with 14 people at our first meeting, in October 2012 we joined the ICUsteps charity as one of their local groups, I then had the privilege of becoming a trustee of ICUsteps last year,with the great pleasure of speaking in front of 200 people about my ICU experience, (something I would never have done before) at their first ever conference last November.

    So now life is very different from my pre-ICU days, I don't have perfect health but I feel a much more understanding person and appreciate life so much more.

  • The first few months out of the hospital I was in denial. After spending two weeks in icu, 10 days in a coma two operations and two weeks in a rehabilitation hospital relearning how to walk I came home expecting to get my life back to normal. I still had two sometimes three trips a week to the hospital and doctor's offices, and a long list of medications. I became depressed had trouble sleeping and cried a lot (nothing like the old me).

    I began seeing a therapist for PTSD, started practicing meditation, writing in a journal and painting. I also volunteer at in a hospital. My life slowly started to have a rhythm to it. This didn't happen all at once (it has taken 2.5 years), and it is a very different life. No more walking 5k three times a week, now I use a bicycle. Training with weights is too much strain, now I swim.

    This is what I wish someone would have told me, 1. that after critical illness you must build a new life and find a new normal. 2. It is difficult, because you may have liked your old normal. 3. Don't be afraid to seek help...this forum has been a great help. 4. It will take time, maybe years maybe not. 5. Be kind to yourself.

  • Twash - I think your last paragraph is so good -

    Helen, I hope it helps and puts things in perspective. Re your hair: this happened to me, it's distressing, and I worried I was going bald. But after a few months - during which, I bought special hair products and my hairdresser did not put any colour on - it gradually grew back and is now good as before. Re your driving: this too is frustrating, in total I couldn't drive for nearly a year. Be patient, these things will come back, but slowly. Over time, you will find your 'new normal'

  • Thank you so much and your last paragraph is just awesome!

  • No. 5 is by far the most important!! Having said that, I am guilty of not doing it!! Pot and kettle spring to mind!!

  • Hi HelenV I was in ICU 14 months ago and know just what you are feeling, the only way to build your muscles up is to increase your daily exercise by a couple of mins a day until you feel stronger, I went back to the gym after about 7 weeks, just doing about 5 mins a day and stepping it up each week.so on that score its just a matter of building yourself up. when i first came home I could do nothing for myself, I was too weak to take a paper hanky out of the box, couldnt use my computer or my mobile phone, i was too weak to hold my hair dryer, couldnt take a shower on my own, even had a very hard job to sitting for long enough to shower, didnt sleep very well and was petrified of getting any infection, my eyes didnt focus properly and my hearing wasnt normal, nothing that I ate or drank tasted the same and I began to think i would never get back to normal but bit by little bit over the following year I gained back my strength back but it took many many months, what kept me going was just the little tiny things that came back, they made me think that all was going to be ok if I was just patient. i also had 12 months of aftercare from the ICU that i was in and that helped a lot, even if it only told me that what i was going through was normal AND WOULD GET BETTER so hang in there and it will happen for you

    I also had big big problems with my hair, big thin patches all over my head so that you could see my scalp, i started taking (1 a day) 'Health aid Hair Skin and Nail' vitamins which I got from my chemist it took about 2 months to see any difference but gradually my hair came back, although my usually straight hair came back curly, I also used for a while Jamaican Black Caster Oil which i got from Amazon, it was very messy to use but i know that it helped.

    after 14 months I am now nearly back to normal, I can do everything for myself now, I just get a little tired quicker that I used to but I think that its a small price to pay, many people in our position do not make it at all so I am grateful that I was one of the very lucky ones

    I do know that you feel it is all a big struggle and you feel as though you are getting nowhere but if you keep up the exercise and get some vitamins for your hair i know in a couple of months or so you will feel that you are coming out the other side, it is just time and it is personal it all depends on your body and your will to carry on, so keep your chin up, soldier on and you will get there eventually

  • Thank you all for your replies :) I think I liked it better when I wasn't aware I had some of these issues but I have discovered I'm a lot mellower now and enjoy feeling that way so I'm going to be mellow and try to just roll with the way things are and keep celebrating my new chance at life. That said I'll allow myself the down days I just won't let myself stay in that place. And in the meantime I'll get to know the new me :)

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