Before I get started I want to thank, from the bottom of my heart, everyone on this site that shared their stories and or gave their support to my hubby ( HutcH1972) over the past month. I do not know where he would be if had not found ICUsteps and all of you amazing people. Marc praises this site and all of you every chance he gets. He tells everyone to check out the site that saved him. The site that made his head/thinking do a 180-degree change. After hearing about your triumphs when it looked like there was no hope, gave him hope and a positive outlook. He said he was actually walking around with a smile on his face because he knew i would win the battle i was in. As a result, it put other family members, especially our kids, more at ease. They too were thinking more positively about the outcome.
Marc tells everyone to look at your site: doctors, nurses, hospital social workers, our family members and even other patients family members sitting in the ICU waiting area.
I truly do thank you.
I on the other hand, am so far from being positive about all this. I am so very scared and also before this event, I already had immense guilt and resentment. All i ever wanted was to be a wife and mother. And with my disease and illness, I already didn't have the coping skills. I was in a state of guilt and turmoil.
Now i am so lost, panic attacks at an all-time high, afraid to fall asleep and not wake up. And to find out my husband was called at work and was told to get my family and friends to the hospital quickly in case there were any goodbyes to be said.
It does have to be said, I have the strongest most loving man in the world. He is my world!!
The tie that binds,
I love my family more than life itself. I just don't think i can put them thru any other BS. At some point, i was going down hill fast and my trach tube was put in quickly. Some damage was done. I may never sing again ( my second love after my family). Also, they do not know how loud i will be able to talk. Right now i am just above a whisper, that may be it. My loving hubby says he kind of likes that idea. He tries to make me laugh to lift my spirits. Near impossible right now.
I am leaning towards a long-term assisted living community, talking to a social worker today. I'll make a decision by the end of the week.
sincerly, Ally
Written by
ALLYhutch1976
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Hi and fantastic news your awake and here to tell your tale. I am not going to sugar coat it as it wouldn't be fair, but it's all perfectly normal to feel the way you do at moment I remember not wanting to sleep with the same fears as you mentioned and also the dreams I had whilst in the coma. It will take months for you to get over this and get all the help you can, talk about it to everyone it's so true a problem shared is a problem halved. Ask the icu ward about a local support group it will just be people who have been in a coma and know how and what your feeling and going through.
As for the trachea I also had the same I now have scarring inside and for a long time it effected my breathing but I am now 3 years down the line and breathing and voice has improved 80%.
One last thing don't rush yourself your body and mind has just been through an ordeal and both will tire very very easily so give yourself time, talk, eat and most importantly sleep and you will feel so much differently in a few months don't let this control your life xxx
Wow Ally!!! Welcome!!! I'm amazed you've managed to type all of that! That in itself is a miracle!!!
Please know that the journey ahead is long, but keep a log of your progress. My Facebook posts from 1 year ago are now popping up in my memories like "managed to put my own bra on today" and "managed to walk down a flight of stairs on my bum". My darling, I'm now back to work full time, I'm playing my violin again, first concert tonight!
The panic attacks are a new one for me too, I've always had depression but these have come on since the coma. Google grounding techniques and square breathing which have helped me, and get some CBT when you can. Cognitive behaviour therapy to give you coping techniques.
I'd say the first 4-5 months post coma are the toughest physically but you WILL get there. The next 12 months are when your mental health will be tested. Just know it's a marathon not a sprint, or better still a triathlon. The swim at the start is when you learn to walk again, write, dress, feed yourself. The cycle ride is pushing through the self doubt of pain and tiredness and the marathon at the end is when you can quit or carry on. I think you will carry on xx
Hi Ally you are doing amazingly well and I cannot believe you managed to type your piece. I most definitely couldn't have done that are your stage. I would agree with the other replies you have received. When people told me it would be a marathon I thought I would be different and it would be perhaps a mile until recovery. Its just over a year since I came home and I'm still in recovery.
Take all the help you can get and grab anything on offer with both hands. If there are any local support groups join them so that you can talk to others who have had your experience. Seek help for your mental health as well as your physical health. Keep a diary or a journal so that you can look back and see how far you have come in your recovery journey.
I wouldn't make any major decisions just now and just concentrate on your recovery. Your body has been through a very hard time and you have survived against the odds so embrace life and enjoy every day.
Hi Ally xxx Welcome back here !! , Coma is such a strange place to be in and as much as you tell other they really wont understand unlike us here who have been there too , a fantasy that is so real and scarey , I was lucky in the fact i had no trouble sleeping but i did have memory issues for a good 6 months afterwards , My kidney had packed up so had that issue too but now i am 1 year and 2 months on and i feel back to normal as can be. I'm glad we helped your hubby and i wish my kids could have found this site. Please take your time dont push too hard and gain each little victory. Recovery takes us all different ways but just enjoy being alive. Are you home now ? x jason
Ally, I have to apologise for the delay in responding. I saw your post this morning at 6am while I was preparing for the first ICUsteps congress of our member groups. Even 14 years after my own critical illness, your message was so touching I had to make room in one of the talks, and add a slide to read out your words to the delegates - and even mix of healthcare professionals and former ICU patients and relatives. They were as touched as I was. That's exactly why we all do what we do and it's so very moving to know it's been a help to you and your family.
Recovery does take time, and at the moment time will feel like it's passing so slowly but it's reassuring to know you have a loving family there to support you and that you're able to cherish that. A phrase that became very common in my own recovery was "don't beat yourself up about it". It might sound simple, but they're truly wise words. Though we would never choose to be critically ill, when you have been through that and are fortunate enough to come out the other side, it makes the things that really matter in life seem really clear. It's the sort of clarity that daily life has a way of clouding but you're among people here who truly understand.
Take one day at a time, and as you recover try to keep track of how far you've come rather than how difficult some things may still be. You've done so very well already, and it sounds like you have a wonderful support team to inspire you to keep getting better.
Do take care, keep getting better and treasure every moment you have with the ones you love.
Thank you for your responses and encouragement. We do have to let everyone know that Marc did the typing of my postings. I am still in hospital up in a normal ward. I wrote out the posting on paper and Marc went home and typed it up. Marc then prints everything out and brings it for me to read. We are showing all the postings we print out to the nurses and social workers here so hopefully they can tell other families that are in the ICU. We want others to find this site as soon as possible because it is such an amazing help.
Peter, we were wondering which part of our posting you used at the ICUsteps congress. We found it pretty cool that you used our words in your presentation.
I will fill you all in on my progress very soon. I am finding it very tough in the hospital, I am very depressed. I cannot sleep because I still fear I will not wake up. I have a tough time moving around, I am very weak. I have lost about 40 pounds. The nurses treat me very poorly. They say I ask for help too much, but in the same sentence they say I am not supposed to do anything on my own. Now when I push the help button they won't respond for 20minutes , if at all. I hate it here but my family and I are not ready for me to go home.
I am lost, and very depressed. Thank you all for being here for me. I t is a great place to vent and talk to people that that know what I am going through. My hubby does a great job helping and listening, but you can only truly relate and empathize if you have been there.
Hi Ally, recovery really does take a long time and it's encouraging that you're doing so well. Your description of the general ward is horribly familiar. The lack of understanding makes recovery so much harder. It's worth asking if your hospital has an critical care outreach team, as they can help smooth the transition to the general ward.
I read out the first two paragraphs of your post to other support group members - it was really touching to hear your words that support, and the site has been a help to your husband and you. We're motivated to help because we've been there too, so to hear it's made a difference to someone's experience is a great motivational boost to keep going.
Recovery is a long and slow process. Knowing this doesn't make it any shorter, but hopefully does make it a little less frustrating. The weight loss you mentioned will include a lot of skeletal muscle which takes a long time to rebuild. I've heard stories of other patients who've gotten home and were too weak to lift a ceramic mug of tea, having only had to cope with a small plastic cup in hospital. When I was told it could take me a year or more to recover, I couldn't believe it... but it really did take that long.
I like to think of it as having a second chance, so everything's a bonus but this time round we have a new insight into the things that really matter in life. Stay positive and try not to be frustrated by how long it all takes.
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