Sorry long post but I really need to empty my brain hope it’s ok. I went to hospital after having constipation for a week or so and nothing was working so I presumed it was impacted, turned out I needed life saving major surgery as I had blood clots in my bowel. I was told it was extremely risky as I’m a bigger girl and that there was a 22% chance of survival and that my next of kin are on their way! I was also told not operating was a death sentence.
So I was in ICU for about a month on lots of drugs, hallucinating all sorts terrifying!!! I lost pretty much all my strength I couldn’t even lift my foot or my head let alone walk or wave! I was nil by mouth I had horrible things like a central line put in and changed multiple times (I’m scared of blood tests so this was terrifying) and yet I remained patient, friendly and calm on the outside with all staff!
Now a month on and I have been discharged, it’s been around ten days and the anxiety I’m experiencing now I’m safe and free is excruciating and it almost makes me wish I didn’t survive which is ridiculous as I bargained for this! I don’t understand how in hospital, I pushed myself to be strong and now I’m home I can’t do anything for myself. My hair is matted, I’m not eating and I can smell things that aren’t here like the rubber mask from the oxygen thing!
I also can’t walk very far or get up off the sofa, only my bed and the toilet and am only just able to lie on my side so I feel like I have a long way to go and everyday feels like ground hog day! I can’t sleep either which probably isn’t helping and I’m barely eating. Also due to the type of surgery I have, I now have the delight of becoming good friends with my toilet let’s just put it that way. Any movement or food and I gotta go (eye roll)
im not sure what to ask for in terms of advice other then just reassurance that itl get better because today has been one of the worst days of my life … and I’m home in safe bed… which is crazy
my mum and bf were very supportive they were there all the way through almost every day even when I was unconscious on a ventilator! My mums in Ireland but I live in Scotland and only know my bf so far so I’m very reliant on him and I needed to find some one else to talk to so he has a break!
help
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Critical illness does certain things to us that seem not to be connected to any particular condition or disease. Poor sleep hygiene is common too.
This passage covers many of them :
“How a critical illness can affect your body
Weakness and weight loss
Don't be surprised if you feel very tired and weak at first. Your muscles will have lost strength while you were ill and not active. The longer you were ill for, the more your muscles will have weakened. This muscle loss happens faster for patients who have been on a breathing machine.
You may also have lost a lot of weight because of this muscle loss. You will put weight on again as you begin to get better and exercise.
You will get stronger, but it will take time. Physical recovery will be measured in months rather than weeks, and it may take up to 18 months for you to feel fully better. Set yourself realistic goals. Keeping a diary that you can read at times when you don't feel so well can make you realise how much progress you are making.
Even if you don't make a full recovery, you can still achieve a lot and live a full life. There are people who have been critically ill for months, and a year later, you'd never know what they'd been through. Try to stay positive, even if it means making some changes to the way you live.
Breathing
You may have needed to have a tracheostomy. This is a procedure to make a hole in your throat and insert a tube, which is connected to a ventilator (a breathing machine). The tracheostomy makes it easier for you to breathe and to reduce your body's need for the ventilator. If you had one of these you will have a scar on your neck where the tube was inserted. The scar will gradually fade and become less obvious.
Keep doing the breathing exercises the physiotherapist gave you to strengthen the muscles and reduce the risk of chest infection.
Your voice
If you've had help with your breathing, your voice may have changed. At first your throat may be sore so don't strain your voice. Try to relax as much as you can when you speak, and drink plenty of water. You may have marks at the corners of your mouth caused by the tape used to keep your breathing tube in place. You may also have a dry mouth caused by a lack of saliva.
Your skin and hair
Your skin may be dry or itchy after your illness. Moisturising it regularly can help stop this.
You may notice changes to your hair and some of it may fall out. This is not unusual and can even happen months after you leave hospital. It usually grows back but it may be more curly, straight or thin, or a different colour from how it was before.
Bruising
If you were on a drip or had other tubes in you, you may have bruises and scars. These are usually on your hands, arms, wrists, neck, groin or sides of your chest. You may also have bruises on your stomach because of injections to stop your blood from getting clots.
Changes to your hearing, taste, touch and sense of smell
Your senses may be affected by your stay in the ICU, but the effects don't usually last for very long. Your hearing, sight, taste, touch and sense of smell may have changed, which can be upsetting.
Some of the drugs you may have to take can affect your hearing. Other types of drugs can leave a metallic taste in your mouth.
You may have been fed through a tube into your stomach, or by a drip into your veins. When you begin to eat and drink normally again, food may taste stronger or just different. Your sense of smell may also be affected because it is closely linked to your sense of taste.
You may have sore, dry eyes because you were sedated for a long time, or your eyes may be puffy and swollen because of the fluids you were given to keep you hydrated.
Things that touch your skin may feel odd and you may experience tingling in parts of your body. This can be caused by some of the drugs you were given or by your body's reaction to your illness.
These changes are usually temporary and should disappear over time.
Problems going to the toilet
When you were in the ICU, a doctor may have put a tube in your bladder. This is called a urinary catheter. It drains urine from your bladder and allows the staff to check your fluid levels. When the tube is taken out, your muscles may be weaker so you may find it difficult to control your bladder. Don't worry, this usually returns to normal.
If you have problems urinating, you may have an infection, so see your doctor or a nurse as soon as possible. Symptoms include:
not being able to pass urine for several hours;
having a burning pain while urinating; and
blood in your urine.
Sometimes medication can change the amount and colour of your urine. It may even affect how often you go to the toilet. The medication may also affect your bowel movements.
If you're worried about any of these things, talk to your doctor about them.”
Thanks for the reply! I saw a lot of the info in the website but the reply is still appreciated ❤️ I think maybe I should try and get a counsellor as I’m struggling a great deal
Yes - it’s a good idea - trauma memory &/ or PTSD don’t necessarily go away of their own accord - it is down to how the brain stores trauma memory - or rather - it doesn’t store it in the right place and it keeps jumping out at you like it just happened - it isn’t designated to the past like most memory.
We run a drop-in weekly on zoom that gives people the opportunity to talk and try and make as best a job of moving forward again in life.
Definitely recognise a lot of this! I'm in month 8 and still a shadow of my old self. But after a lot of chasing I got an ICU follow up appointment where I saw a doctor OT and physio and now also have psychologist appointments. I could have done with them earlier but at least now have the right support. It's making a huge difference mentally ...and validating how I feel has helped loads as people just don't understand post ICU health. ICU steps have helped enormously ....chase every bit of help there is available. My GP was wonderful , I was just lucky she knew the score! Another I saw was very dismissive and basically told me to calm down ! Now I know what I felt and still feel is normal I'm coping a lot better. Huge strain on relationship at home however and am so dependant on that person as can't drive or get anywhere without them! But you'll get through ...don't give up ! Help is out there !
10 days is a really short time! I don't think you should be worrying about how you are feeling just yet, just try to accept this is "time out" from normal life to deal with recovery. I was in same boat at start of the year after strep a, flu, pneumonia and sepsis in December. 7 months on and I am almost back to normal. I set myself a 6 month goal to see how things were at 6 months and just accept that before that time I wasn't going to be functioning as I wanted.
This is all very familiar! I was in icu for 12 weeks, on ECMO for 23days and in hospital a total of just over 3 months. I can recall all the things you are feeling. It's a mixture of scary, painful, emotional and depressing. I am now 3 years down the line. I'm not my old self. But I'm alive and coping. It's taken a long time to recover. And you will get there. Be kind to yourself and praise yourself when you gradually achieve more. Like you, I could barely move in bed let alone walk when I came round. I can now, but I'm slow, tire easily and still not as strong as I once was. I'm learning to accept the new version of me. Though I do get incredibly frustrated ! Frequently!!I wish you well, take your time, love yourself and don't give up. You can do this xx
You can get through it too. If I can, anyone can!I suffer a lot with anxiety. Mostly if I'm intending to leave home. I feel nauseous, light headed and it all plays havoc with my stomach and needing the loo frequently.
I'm fighting to get past this anxiety, this is the main problem I'm finding controlling.
I’m having that problem too but after eating or moving it’s just liquid and urgent tmi sorry lol … I just dread repeating the same day over and over but I have to just listen to you all and trust it gets easier x
I promise you, it will improve. I remember thinking, for what seemed like forever, that it was going to go on forever. I was advised a little late that it's a good idea to keep a diary of what you accomplish as time goes by. Then you can look back and see how well you have actually done.I rely on my husband to bring me back to reality when I feel low and frustrated. When I complain of feeling weak, slow and weary. He gets me to look at how I was in the beginning of my recovery. It's only then I realise I gave done remarkably well ! In the early days, I couldn't stand up let alone walk. Now, 3 yrs on I'm back at work as a teaching Assistant and on increased hours! Yes I'm knackered but it proves it's all possible in the end x
I was in ITU in January after going into acute respiratory failure. I was placed on a ventilator and in a coma for over two weeks.
When I first came home, I was a total mess and it was the hardest time of my life. Which - seeing as I’d just had a very tough time during chemotherapy - helps you know it’s very normal post ITU to experience everything you have mentioned.
I couldn’t walk more than a few steps, my husband has to help me to the toilet, cut my dinner, shower me (I had to buy a stool to sit on as couldn’t stand that long). I couldn’t hold a tea cup as it was too heavy, so had warm drinks from plastic beakers. I suffered with very low moods, I wished I had never woken up. Hated the scars from my central and arterial lines. I would ask the time constantly as I just always felt panicked and as if I needed to ‘make it through’ the next hour. I would pray for bedtime to come as I felt useless and so tired, but when it came I couldn’t sleep.
BUT it got easier with time. I got stronger, my mood improved. I was very determined to get my mobility back so tried to do more physically every day. My ITU team referred me to a psychologist who I’ve been working with since.
I also attend ICU Steps meeting locally to myself - it may be worth seeing if there’s one local to you? I started on some antidepressants which helped with mood and sleep too. Maybe give your GP a ring and they should help you with contact details for talking therapies and perhaps provide some medication.
You could also reach out to ITU as they might be able to advise and know of local support.
Overall, please know that things do get better. I’m walking, driving and living a fairly normal life again now (my mobility is still slow at times) but there was a time I couldn’t envisage a future - similar to yourself. But it’s there, take one day at a time.
If you need any further advice or a chat - you can always message me.
Thankyou this means so much to me it sounds very similar to my experience and feelings! I have a psychologist helping me from itu every couple of weeks but I’ve had one starter session if u like so, not much help so far! It’s my lack of patience probably not helping
On a Tuesday in December 2010, I went to work that morning, by 11:00 at night, I was in a coma in the ER. By Friday, I was moved to ICU and in multiple organ failure. I developed necrotizing pancreatitis with pseudocyst and repeated sepsis. I woke up some time in March 2011. All of my muscles had atrophied. Recovery was rough. I went through rehab while I was recovering from abdominal surgery with an open wound. I counted my progress, in seconds standing, then in one more step. It seemed to take forever. I learned progress is progress, no matter how small. I had to go on antidepression meds for a while, to help me handle a difficult situation.
Just take your recovery one day at a time. Today, is one more day to get stronger. Are you eligible for any kind of OT and/or PT? It was hard, but OT and PT helped me focus on moving forward and getting past the illness. You're not alone. You can do this.
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