Being told that you're well enough to leave the intensive care unit (ICU) is a huge milestone. It's the first major step in your recovery process, and one that deserves to be celebrated. But it might also leave you with questions about what comes next.
No one can tell you exactly what your journey to recovery will be like, but it can be helpful to hear from those who've been in the same situation.
Mayo Clinic Connect is an online community for patients and caregivers to share experiences, advice and support. On one post, people who have spent time in an ICU share their experiences with one another. Here is some of their best advice for navigating life after a critical illness.
Be gentle with yourself — Recovery takes time
Your body is just beginning to heal, and it can be difficult to understand the severity of your illness. You may need to pace yourself on your road to recovery. It's common to feel a range of emotions.
From Mayo Clinic Connect:
- "I didn't just bounce back after two or three weeks, as I assumed I would. There's a lot of work to do afterward, both physically and mentally."
- "What surprised me was my lack of stamina in doing anything. Walking to the shower felt like I ran around the block."
- "I had not been sick before being hospitalized, and it was an overwhelming shock to discover later that I'd been critically ill for days — with no memory of it!"
- "I experienced the feeling of being abandoned after being transferred to the surgical floor on the day before my release. It was so quiet, and I was used to someone checking on me almost hourly."
Watch for a condition called PICS
As you heal, keep a close eye on your health. If you notice new or worsening physical, mental or emotional problems after leaving the ICU, it might be something called post-intensive care syndrome (PICS).
Symptoms of PICS can include:
- Physical symptoms, like muscle weakness, fatigue, chronic pain or clumsiness
- Mental symptoms, like confusion, difficulty concentrating or forgetfulness
- Emotional symptoms, like flashbacks, nightmares, trouble sleeping, depression or anxiety
Many of the members of the Mayo Clinic Connect community experienced symptoms of PICS:
- "While I was still in the ICU, the psychiatry team told me my experience could be described as trauma."
- "About a month after open-heart surgery, I began having painful flashbacks and reliving the painful and prolonged extubation."
- "It has been over 10 months since my time in the ICU. I have returned to the patterns of my life, started working again, and am busy with my family. But over the last month or so, I have experienced this overwhelming sadness that I did not expect. I have no history of depression, and this inability to rally my mood has been so surprising and difficult."
Talk to your doctor if you're concerned about your health. There are options — mental health care and occupational therapy — that can help you feel better.
If your doctor isn't familiar with PICS, be persistent in seeking care. One Mayo Clinic Connect community member advised: "Get help from your care team right away. If they don't have any experience with PICS, keep trying until you find someone who does."
Watch for PICS in others, too
Family members and loved ones can be affected by the stress of an ICU stay, too. It's called post-intensive care syndrome-family (PICS-F).
Primary caregivers or decision-makers are more likely to experience PICS-F, but it can affect anyone close to you. Symptoms of PICS-F can include anxiety, depression, post-traumatic stress disorder and sleep problems.
"Various family members stayed with me round-the-clock in the ICU," said one community member. "They experienced my frightening ups and downs and the reality that I might not survive. Once home I was full of questions about what I'd been through. It didn't dawn on me that asking about my hospitalization continuously reexposed them to their own ICU trauma."
You might need to fill in the missing gaps
It's common to not remember — or not know the extent of — everything that happened while you were in the ICU. There could be medications, treatments or complications you don't know about. Having a complete picture of your ICU stay, from start to finish, can help you understand your illness and take control of your recovery.
Try these tips from Mayo Clinic Connect:
- Write your memories and feelings in a journal. "I found that writing in a journal, something I'd never done before, was very, very helpful. Just seeing my feelings on paper made me feel better."
- Request your complete medical records from your stay in the ICU. "Getting the full picture helped me celebrate my survival. ... Gratitude is important to healthy healing. It also helped me understand why I was so weak, forgetful, fearful, confused, exhausted and in pain."
- Use your collected information to help understand your recovery. "Be easy on yourself. Don't expect too much, even when others around you might be expecting you to be 'healed by now.' Realize that recovery isn't an event. It's a process."
Remember: You're not alone
Each illness, as well as each recovery, looks different. But finding similarities in shared experiences can help you heal. Ask your care team to connect you with a local ICU survivor group in your area. Or search for Mayo Clinic Connect to find the online community of those who have experienced the ICU.
As one community member noted, "It truly helps to know there are others like me."