I want to be me again😢

Hi I had septic shock and Takosubo Cardiomyopathy nearly 3years ago was in ICU 4days in an induced coma! Until September last year my doctor told me to get a grip of myself and stop dwelling on the past! I had flashbacks sweating chest pain and hadn't slept since coming home! I was left with a heart problem! I got on with things as you do! Until my cardiologist suggested I talk with someone! I am now getting help I have PTSD. I just want to be me again not this tired grumpy old person that I see in the mirror!! 😢

[Luckyone]

Hi Colliedogs4me,

Welcome to the ICUsteps community, unfortunately as most people on here will tell you we will never be the person we were before our unplanned trip to ICU, mine was for 3 months and I can still remember it like yesterday even though it was over 5 years ago.

Have you checked at icusteps.org/support to see if you have a local support group in your area? It's a great place to meet others that understand what you've been through and are still going through, most GP's will never understand how traumatic an experience being in ICU is as they have very little contact with people that have been there. I think the main question we all ask ourselves is "why me" unfortunately no one has that answer.

Hopefully now you're getting the support you desperately needed, you will start to feel more your old self.

Bill

[Hidden in reply to Luckyone]

Thanks Luckyone! Bill it's so frustrating when you can't do things! I used to walk my collie for miles now I do half a mile then I'm shattered 😟 I'm always out of breath! I think the worst thing is the flash backs of being in ICU! My Physicoligist told me to speak to my family about how they felt when I was in a coma! I'm afraid one of them rolled her eyes as if to say " God mum it's in the past why do you want to speak about it! Let it go!!! But it's not in the past for me I live it every night when I go to sleep! So I don't sleep!! If I relax during the day it invades my mind!! I want it to go away but it won't!!😢 Sorry I sound as though I'm whining 😢X

[Luckyone in reply to Hidden]

Unfortunately some family members look at it very differently than our memories of ICU, often they believe you survived so you're fine so put it behind you like it never happened, if it was only that simple, the nightmares & hallucinations fade with time but can be triggered so easily, a smell, a sound or for me it's an Adele song that was continually being played on the radio beside my bed.

Try explaining to your daughter why you need to talk about it, the feeling of guilt of what you put the family through even though there's nothing you could of done to stop it is something we all feel, my son will never talk about it as he finds it to difficult to talk about, but my wife and myself still talk about it due to my involvement with ICUsteps.

Some of us never fully recover physically due to what we've been left with but I look at it as we're still here a bit battered but we're the lucky ones, we survived against the odds which makes us all a very special group of people and you have the great support of the community on here.

[Twash in reply to Hidden]

Hi Colliedogs4me

Like Luckyone said, it is tough for families to understand. For them it is in the past. I am coming on my five year anniversary of spending ten days in icu and 1 month in the hospital from septic shock. I use to walk 5k and jog for fun, but now things are different. Walking a half mile without needing to sit down is a victory, riding my bike twice around the park is also a win. I had to change careers and move in with my daughter, who is supportive but doesn't want me talk about what I lost. She's just happy I am alive. I had to adjust to the new me. It has been tough, but it's okay.

What helps me....

I was also diagnosed with PTSD, cognitive processing therapy (CPT) helped me -- talk to your therapist about it

When I feel a flashback happening, I discretely, hold a sleeve or collar of my clothing to my nose and breathe slowly for 10 seconds (my flashbacks are tied to smells) this brings my mind back to the present

When I have trouble sleeping, I write in my journal and/or draw the things that are really upsetting me.

I build with Lego -- I can't tell you how much this has helped my anxiety.

I didn't mean to go on, but you must take the time to find things that work for you...and you will.

[Hidden in reply to Twash]

Hi Twash thanks for replying 😊 I used to walk for miles but can only do 30mins tops that has been a gradual build up over 3years I have to take my collie out with me as I don't feel safe on my own. My breathing is rubbish since my illness never had that problem before 😟 I get irritated very easily and want to be I my own. I'm seeing a physcoligist have been since September he has unlocked my mind for me as I couldn't remember being in a coma or ICU . We are doing imaginable exposure therapy it has really helped me was a bit scary for a while and knocked me for six. But now I can talk about all the scary stuff and not get so upset. I still have problems sleeping my heart pounds I sweat and I shake! I listen to my music and that seems to help. I wake up in the middle of the night gasping for breath and shaking. Thanks for listening xx

[Troubledwife in reply to Hidden]

It's hard to get feedback from people who don't know what you personally have gone through. Some people just deal with situations in the moment and try to leave it there not wanting to dwell on it. Sometimes we have to sort through our own thoughts and decide what answers we want to find and how to cope. It's disappointing not being able to get help from family but just know that everyone is different in dealing with trauma. Try analyzing your emotions and thoughts instead of letting them overwhelm you. If you are open to it pray for understanding and peace, prayer works when you have faith in what you're asking for

[Hidden in reply to Troubledwife]

I'm sorry I don't agree with you. The guys on here have been so supportive we have all been in ICU even though for a day or 20 days we all know how it feels the panic when we get a flashback the sweating and the shaking 😟 I am not dwelling on it I am dealing with it big time 😳

[KeylargoKim in reply to Luckyone]

My question is why have none of the doctors been able to warn us? My doctor gave me an inhaler and told me to follow up with a cardiovascular specialist. I have complained of every symptom since I left the icu and came home from the hospital. And all the doctors looked and treated me as If I was crazy ! Now I find 100s of people with my same symptoms and condition who understand exactly how I feel. It makes me angry to be treated like this by the medical professionals. I have had the panic attacks the hair loss the high blood pressure and heart rates. The dizziness the incontinence but mostly the despair of trying to feel whole agan. Thank you for your posts. And to EVERYONE who reads this... you are my heros.

[Hidden]

Thanks Bill it is really great to speak to people that know how I feel in myself. I know I'm so lucky to have been able to fight my illness and live . My friend died the month before I became ill from septic shock . She left it too long to go the hospital she had been suffering from a chest infection and had antibiotics from the doctor but had finished them at the weekend she said she still couldn't breathe properly I told her to go back and some more pills from the doctor on the Tuesday! She didn't go 😢 On the Wednesday she was so bad her husband took her to the hospital himself at 10 am she said to him see you soon Hun love you!! By 11am she was dead😢 She had septis caused by the chest infection 😟 When I was in my coma I was in limbo and she told me it wasn't my time to die and kicked my rear end down the bright light back to my body! So grateful to her!! I don't want to push my girls at the moment as one has just lost her baby and the other one is waiting on a kidney transplant! I have made an appointment to go back to ICU and talk to nurse in charge of the unit I have been once before and freaked out! So I am going to be brave and do this! It's not until the 29th of this month! Wish me luck thanks again Avril

[Hidden]

Thanks Tiaclydebonnie it really helps to know that someone feels like me 😊 Today was the 3rd anniversary of me being in ICU I thought I was handling it well at work today when a customer had some sort of aftershave on that smelt chemically like the smell in ICU! I could feel myself starting to shake and start to have a flashback I said to my boss I need to go through the back for a minute! I sat down shaking then looked at the clock which I shouldn't have done as that is one of my triggers 😢 I ended up seeing everything again! Luckily my boss came through and spoke to me gently I managed to breathe myself out of it! They are not so scary as they used to be now that I am getting help. Thanks for understanding xx hugs x

[BBDEBS]

Hey Avril,

I hope you're well?

I'm so glad you found this community, I found Bill and co so supportive and the icu steps support group is amazing. Please know we all take time to recover, the emotional and physical stress is unbelievable.

I'm 4 months post coma and my lovely neighbour threatened to "smash my f****** face in yesterday" (she's vile) so I had to call the police. I'd normally laugh it off or give as good as I got but I felt so vulnerable home alone, I cried all day, for about 14 hours.

It is hard on family members so your daughter might not want to discuss it, it was way harder on them than for us in our coma. If you can get to icu steps, maybe take her to the next one? They are pretty regular and my family found it really useful.

Take care,

Debs X

[Hidden in reply to BBDEBS]

Hi Debs your neighbour sounds like a barrel of laughs you should keep a baseball bat handy!! Only joking! People can be so cruel especially when your in a fragile state 😟 I have asked my girls to go with me but they said they couldn't handle it 😟! Sometimes I feel so all alone although there are lots of people all around me! It's my 3 year anniversary tomorrow! I see my physcoligist next week don't know how long I've got with him and that freaks me out! He's opened up my brain when it was so closed up I can dream and have nightmares aghhhh! Where before it was nothing! Four months is so early after ICU just keep focused talk to anyone who will listen. I just wish I had someone back when I was recovering maybe I wouldn't feel like I feel today ! Stay strong Hun you will get there. Take care Avril x

[Natalie1969]

hey.. I'm only 6 months after septicaemia and itu.. So I'm still really struggling..

I don't really have words of advice and answers but I do know exactly how you feel.

I don't mention it to my son, he's very much a your better now so move on kinda person. Although I'm not better.. My sepsis was bought on by a stuck kidney stone.. I'm going back into hospital on 19th July for kidney operation .

I panic daily it will happen again... I re live the hallucinations and my legs are still not working very well..

I hope you start to feel better, I hoped it would be a much quicker fix but I'm clearly wrong..

lots of love

[Hidden]

Hi Natalie 1969 I was still off work where you are at the moment I was 7months off work it was a big shock to the system when I went back someone shouted at me I went to pieces😢 The feeling of sepsis returning was a biggy for me as well it does get better but it takes time. Luckily I have help now I didn't begin with my doctor wasn't very helpful " go away and stop dwelling on it!" Was what I got! Yes the flashbacks are horrendous I have now learned how to put them to bed and not be frightened of them. Talking about them definitely helps. Are you in touch with your ICU nurse? If not phone the ward to speak to her mine was a great help to me 😊 If you want to talk anytime I'm here for you xxx take care Hun I know exactly how you are feeling. Good luck for your op xx

[BBDEBS]

Hey both, my blog is at comarecoveryblog.wordpress.comYou can copy and paste into your browser, it might be some help, it might not xx

[angelrock]

PLEASE be patient and kind to yourself, I had my first operation and was put ICU afterwards in September 2014 and my last one in April this year, you will improve in time, listen to your body.

Angie

[Hidden in reply to angelrock]

Thanks Angelrock I used to beat myself up because I couldn't do what I did before everyday I would push myself further and further but got nowhere 😟 Now I do what I can and if people don't like it they can go jump! I still get frustrated with myself when I can't do something but as you said I've stated to listen to my body 😊 I have my collie and she keeps me going! My family are there but don't really want to talk 😟Xxx

[angelrock in reply to Hidden]

Please feel free to call me 01323 430040 evenings are best. I know it takes time and patience, your family are still coping the best they can and they love you so much.

[Hidden]

Hi Tiaclydebonnie I had a flashback at work the other day a guy had a certain aftershave on and it instantly pinged on my brain I could feel myself shaking and my heart pounding so excused myself and went and sat down I was instantly back in ICU even the clock on the wall I was sweating! My boss came through and gently asked me if I was ok and gave me a hug! It wasn't frightening but my body was in overdrive! Now I know they can't hurt me I can learn to get out of them! Talking to my physcoligist has really helped me! Talking to everyone on here is helping! Thanks Bill for letting me be part of this group X I have started cooking again a thing that I lost interest in 😟 I even went clothes shopping with my daughter! I have a long way to go at least I now can awknowledge this which is a step forward for me😊 Taking my dogs out every night for 30 mins of so is another plus for me 😊 Thanks everyone for listening xx

[Luckyone in reply to Hidden]

Hi Avril,

There's no need to thank me for letting you be part of this great community, I'm just the modulator & current secretary for ICUsteps and a very small part of a great charity that is run completely by volunteers, which includes ex-patients, relatives & healthcare professionals all giving up their free time to help others like ourselves, I found ICUsteps by chance almost 5years ago, in the days before the HealthUnlocked community and thanks to them I found a new purpose in life as my illness left me with post ARDS pulmonary fibrosis and unable to continue working, which was hard to accept for a 52yr old non-smoker.

I began running a local support group before becoming a trustee in 2013 and secretary in 2014, I've been very lucky in that I've met some very inspiring people on my journey and I'm very proud to be part of this amazing community and would like to thank everyone for their posts and comments showing real support and understanding to our growing number of community members, because without them we wouldn't have a community.

Thank everyone,

Bill

[Hidden]

Hi guys I went back to visit ICU had a talk with the nurse in charge then we went into the ward 😳 I froze in the middle of it I could see the room I was in and it was swirling in front of me! I was shaking like a leaf! Anne said to me what is it about the room that frightens you? I nearly died in there lots of things happened to me in there! I did my breathing to get some control. Then we walked to the door then I finally managed to stand in the room! Yay!! The smell that triggered my flashback the other day was the floor cleaner! Anne said I was very brave to visit my demons! Was really pleased with myself 😊X

[El_Violet]

Sorry to hear you feel this way. It would be good to find someone to talk to. There are services as CBT via NHS and some places offer self-referrals wellbeing support. Also Mind is now offering online support. Please look for help, that’s a great way to start becoming yourself again. On Youtube you can also find Mindfulness meditation, which is also very helpful.