You may notice that things are different when you first get home after being in the ICU. You may not feel like yourself, close family and friends might treat you a bit differently, and you may need to adjust your routines until you are stronger. This is all normal for recovery.
Return to routine
Lots of people worry about coming home or going back to work after being in the hospital. You may wonder if you’ll be strong enough or be able to do what will be expected of you. This is normal.
If you have young children or other important responsibilities, you may feel more pressure to get back to your usual routine. Make a plan with your family about how you can change things at home to help you. Getting completely well takes time. It’s OK to ask for help until you’re strong enough to do things yourself.
If you have a job, you may need to be off work for a while after you get home. Talk to your boss about when you and your doctor think you might be able to come back to work. You may need to start by working only a couple of hours a day or a few days a week and gradually add hours until you’re back to your usual schedule.
Your body
You’ll probably feel tired and weak when you first get home. Your muscles lose strength when you’re ill and not active. The longer you’re ill, the weaker your muscles will be.
When to call the doctor
Call or talk to your family doctor if you:
- need more support
- have symptoms that you’re worried about
- have questions about anything to do with your health
- If you don’t have a family doctor, call Health Link at 811 or use Find a Doctor
Think of your recovery in months instead of weeks. It can take up to 18 months for you to feel fully like yourself again. Set small, realistic goals. Keeping a diary can help you track your progress. You can read it to notice all the small improvements you’re making.
Stay positive. Focus on what you can do instead of what you can’t do anymore. If a full recovery back to your usual activity and strength is not possible, you can still live a full, purposeful life.
Breathing
Keep doing the breathing exercises the physiotherapist or nurse gave you. Your breathing muscles need to get stronger to lower your risk of a chest infection.
If you were on a breathing machine (ventilator) for more than a few days, you may have had a tracheostomy—a hole made at the base of your throat with a tube connected to a ventilator. If you had a tracheostomy, you’ll have a scar on the front of your neck. The scar will fade as it heals.
Voice
You may notice that your voice has changed, especially if you’ve had a breathing tube. Your throat may be sore at first. Try not to strain your voice. Talk normally without yelling. Try to relax your throat and mouth as much as you can when you talk. Drink plenty of water as your throat and mouth may feel very dry. The dryness will get better as your body makes normal amounts of saliva again.
Skin and hair
Your skin may be dry or itchy. You can use a regular moisturizer as often as you need instead of scratching itchy areas. You may also have bruises and scars on your arms and hands from IVs, tubes, and injections. These usually go away in a couple of weeks.
Your hair might feel different and some of it may fall out. This is normal after being very ill. This can even happen months after you leave hospital. The hair usually grows back, but it may be different (more curly, straight or thin, or a different color) than it was before.
Changes to your 5 senses
Your hearing, sight, taste, touch, and sense of smell may have changed. Some of the things you might notice are:
- hearing – ringing in your ears, sounds are too loud, or too quiet
- taste – metallic taste in your mouth or things don’t taste the same as you remember
- sight – sore, dry eyes, or puffy and swollen eyes
- touch – things that touch your skin may feel odd, or you may have tingling in parts of your body
- smell – very sensitive to smells or things don’t smell like you remember
Many of these changes are because of the medicines, the fluids, and your illness. They can be upsetting, but the changes should go away over time. Talk to your doctor if you are concerned.
Going to the bathroom
In the ICU you may have had a urinary catheter, which is a tube that drains urine (pee) from your bladder. Your bladder muscles may be weaker after the catheter is removed. You might find it hard to start your urine stream or you may leak urine. This usually goes back to normal in a little while. Ask your healthcare team for exercises that can help.
The amount and colour of your urine can change because of medicines you’re taking. They may even affect how often you need to pass urine.
Some medicines can affect your bowel movements (passing stool), such as constipation (hard stool that is difficult to pass) or diarrhea (watery stool). Eat a healthy diet as your healthcare team recommends, and drink enough water to keep hydrated. Talk to your doctor if you have trouble with your bowel movements.
Smoking
If you smoked before your illness, now is a good time to think about quitting. If you did not smoke while you were in hospital, try not to start again when you get home.
Ask your healthcare team or your local pharmacist about supports to quit smoking, such as nicotine replacement options and counselling. There is lots of help available. Go to Alberta Quits to learn more.
Sleep
It can take time to get back to a normal sleep routine. You may find it harder to fall asleep, or you may wake often during the night. If you have trouble sleeping, try having a milky drink at bedtime and avoid tea and coffee with caffeine, because caffeine can keep you awake. Herbal teas may help you fall asleep. Reading or listening to relaxing music before you go to sleep may also help. Your family doctor can give you advice if you have trouble sleeping.
Appetite and eating
You may have received your food as a liquid in the ICU. You may have been fed through a tube into your stomach or by a drip straight into your vein. Your body will have used its stored fat and muscle for energy to help fight your illness. As you recover, you may have difficulty eating because:
- You don’t feel hungry.
- Your mouth is too sore to eat.
- Food tastes different.
- It hurts to swallow.
Start with small portions and eat more often during the day. Have small meals and 2 or 3 snacks each day instead of 3 big meals. You can buy specially prepared milk drinks and desserts, like the ones you were given in hospital, which contain lots of vitamins and minerals. You can also speak to a registered dietitian for help with getting good nutrition as your body recovers.
Take your time when eating and relax afterwards. If some foods taste very salty or sweet, it’s likely that your taste buds are taking time to get back to normal. This is common and will soon improve.
Alcohol
Check with your doctor before you drink alcohol if this is something you normally enjoy. Some medicines don’t interact well with alcohol. You may need to wait to drink alcohol because of certain medicines or your overall health. If your doctor says it’s safe to have a drink, be careful not to drink too much.
Your mouth
Strong antibiotics and steroids can lead to infections such as oral candida (thrush) in your mouth. Thrush can cause a thick white substance to form on your tongue and the roof of your mouth. This makes it painful to swallow. If you think you might have thrush, talk to your family doctor. Thrush is easy to treat.
Drinking water
Drink enough fluids to stay hydrated as you recover. Dehydration (when your body doesn’t have enough fluid) can:
- dry out your skin
- make your body produce less urine – this can affect how well your kidneys work
- make you feel very weak and tired
Water is your best choice to drink. You can also drink juice, tea, or coffee. Limit the amount of caffeine in your drinks so that you can sleep better.
Weight
You may have lost weight from being ill, losing muscle from not being active, and not able to eat as you normally would. You’ll begin to gain weight again as you get better, eat more, and exercise. You will get stronger, but it takes time. Be patient with yourself.
Mental health
When you get home, your mood may change often, and you may feel:
- upset and tearful
- tired, not being able to sleep properly
- like you don’t care what you look like
- quick-tempered and snappy
You may also feel:
- guilty for causing so much trouble and worry
- like you don’t understand what has happened to you and how ill you’ve been
- scared that you almost died
- worried about getting ill again
- worried about how long it’s taking to recover
As you get better and start doing more, you’ll face new challenges. They can make you feel scared—try to keep calm and take slow, deep breaths. You may find that feelings or reactions may be triggered by a sound, smell, or something you see. These reactions usually disappear over time. If these feelings do not improve, it may help to speak to a counsellor or doctor.
Hallucinations and paranoia
It’s common for ICU patients to have hallucinations (seeing or hearing things that aren’t really there) or nightmares. You may have had dreams where you feel like you’re being tortured, trapped in bed, or that you’re being held captive. This could be from the intravenous (IV) lines and catheters connected to you to help support your body and monitor your condition when you were in the ICU. The fear can stay with you for weeks after you’ve left the ICU.
You may also have felt some paranoia (thinking others want to harm you). This too normally passes with time.
If you’re scared to go back to the hospital for a follow-up appointment, take someone you trust for support.
In a few cases, you (or your family) may have extreme symptoms of stress after treatment in the ICU. This is called post-traumatic stress disorder (PTSD) and is rare. It can help to talk to a professional counsellor about your stay in the hospital. You can ask your family doctor to refer you for counselling
Relationships
When you’ve been very sick, your relationships can change. Your family and friends may be very concerned about how you’re feeling. They might not understand why you seem different, can’t focus, or why you aren’t interested in the hobbies you used to enjoy.
Your family and friends were very worried about you. They may want to do everything for you when you get home to show how much they care about you. If this annoys you or you want to start doing more for yourself, talk to them calmly about how you feel. Don’t keep your feelings to yourself.
Sex
It‘s normal to be worried about when it’s safe to start having sex again. Your partner is likely worried about this too.
Some questions you may have are:
- Will my scars be healed enough?
- Will my medical device (such as a colostomy bag, catheter, or pacemaker) get in the way?
- Will I hurt or ache too much?
- Will I be strong enough?
- What if my partner doesn’t want to have sex?
- What if I can’t continue or can’t reach an orgasm?
- What’s going to happen?
If you’re wondering if you’re strong enough for sex, keep track of how well you’re doing with your exercises. If you’re doing well with your exercises without being too sore or tired, you may be ready to have sex again.
Most people find it hard to talk about sex. Try to relax, keep your sense of humour, and be honest with your partner. Take things slowly and remember that cuddles are an important way to build intimacy too.
Sometimes medical problems such as impotence (being unable to get and keep an erection) can affect your sex life. If you’re worried, talk to your family doctor.
Making sense of your stay in the ICU
After leaving the hospital, you may have questions about your stay in the ICU. You may not remember everything, or you may be confused about certain things. Here are some ways that can help you to better understand and remember your ICU stay.
Visit the ICU
You are welcome to come back to the ICU to look around, talk to some of the staff who took care of you, and find out more about what happened to you.
This type of visit can be scary. It may take time until you feel ready to do it. But it can help you to better understand and remember your time in the ICU.
Write about it
It’s normal if you don’t remember everything that happened in the ICU. Write down what you do remember. You can try to remember something about each day you were in hospital to help make sense of the time you lost.
Ask your loved ones
It may help to ask your loved ones what they remember. They may have kept a diary or notes while you were in the ICU. It may take a while before you feel ready to read about or talk about your time in the ICU. It can be an emotional experience, but many people find it helpful.
Learn about your health condition
You may want to know more about the medical reason you were in the ICU. If it helps, you can learn more about your condition and what happened to you. You can talk to your family doctor or any of your healthcare team during follow-up appointments.
Get involved
If you want to contribute your time to the ICU and the care of ICU patients and their families, ask your ICU how you can become involved.
