Doing the work of recovery

Recovery from ICU (Intensive Care Unit) is a long process that can take months or even years (see also ‘Physical recovery from Intensive Care‘). Some people we interviewed had recovered within months after coming home. For others, recovery was a more drawn-out and ongoing process. The speed of recovery depended in part on how severely ill they had been, other conditions they had, and whether they had been mechanically ventilated and proned.

On this page people talk about their experiences with:

The everyday work of physical rehabilitation

How far people recover can vary. Some people we spoke to made a full recovery. Others sustained lasting damage from their Covid infection and had not regained the functional and cognitive abilities they had before.

Common impairments for patients who have been in ICU include muscle weakness and muscle wastage, reduced exercise tolerance, breathlessness (with or without exertion), and fatigue. Some patients sustained injuries, such as shoulder problems, nerve damage or pressure sores from being proned.

Delirium can lead to cognitive impairments. Patients commonly experienced significant psychological issues from the dreams and hallucinations they had whilst in hospital, and from having witnessed the experiences, distress, suffering and deaths of patients around them.

Critical illness takes its toll on the body. This, coupled with lying in a bed without moving for an extended period of time, leads to substantial muscle mass loss and wastage, and general physical weakness, recognised as part of post-intensive care syndrome (PICS). Interventions also impacted on recovery. Those who have been ventilated or have suffered infections in addition to Covid can have physical impairments that need time to heal. Patients and family members described their determination to physically recover, with and without professional support (see also ‘Sources of support after coming out of hospital’).

For many, seeing how their body had changed during their illness felt they were no longer the same person, or had lost the person they were before.

Dana’s husband found it difficult to have a different body to the one he had before his coma; with the help of a private physiotherapist he worked hard to regain his physical strength.

People described setting themselves targets to increase their physical abilities and fitness. Many approached everyday tasks as a form of exercise and soon saw daily improvements. However, doing the work of recovery was not always easy or possible, due to fatigue, pain, lack of motivation and newly acquired disabilities.

During her time in ICU with Covid, Caroline lost both her arms and feet due to sepsis (a life-threatening reaction to an infection). She spent 11 weeks rehabilitating in a specialist amputee centre where she “learned to walk again, was given prosthetic legs, prosthetic arms, [and was] taught various life skills.”

Caroline treated everything in rehabilitation as an opportunity to improve, and to learn how to do things again.

Jenny, who uses a wheelchair, found she tired quickly. She tried to do things like knitting and keeping her mind active.

Jenny found it frustrating that she got tired quickly but tried to do small things and stay positive.

Several people devised additional activities and targets for themselves to increase what they could physically do. Professionals who support and guide rehabilitation see goal setting as important. Patients are encouraged to set their own goals, and to break these down into manageable chunks to help motivation, and to aid recovery.

Roger kept a list of his steps, mapping out his progress.

Laurence turned his exercise regime into a fundraising opportunity for the NHS. He trained to cycle 100 miles to raise money for iPads for the ICU, because video calling had been very significant to his mental wellbeing when he was in intensive care.

After waking up from being ventilated, Laurence could FaceTime his family, which was a real morale booster for him and his family.

Managing one’s own expectations

Recovery is rarely smooth and steady. Instead, processes of recovery are punctuated with ups and downs, one step forward and one step back. The setbacks can lead to sadness, frustrations and worry. All these feelings are normal.

Victor had days on which he felt sad. He sat in the garden in the beautiful weather of the first lockdown for a few days. Then he slowly began to set himself goals.

People we spoke to had to manage their own expectations and anxieties in the face of their unpredictable and slow progress. Professionals emphasised the need to be patient. Michael said that the most helpful advice he had been given is “to take things slowly and, you know, if I’m not up to a hundred per cent or what, it’s not the worst thing in the world, almost you know, take life a day at a time. […] it will be baby steps.” Yet, taking small steps was not easy, and some had to find their limits before they believed it was going to be necessary.

Jo felt that she had control over her breathing and used it to calm herself down.

Mark was discharged from the ward into a rehabilitation unit, as he had requested.

Mark insisted on going to rehabilitation so that he could recover the strength he needed to care for his elderly mother. In rehab, he wanted to be pushed to exercise, and found it hard to take things slowly.

When recovery was slow, people worried about whether they would ever get better or if the limits of their recovery had been reached.

Roger does not know to what extent he can expect to recover, or even retain his abilities in the face of his advancing age.

Mobilising devices and pets for recovery

Many people measured their activities and improvements closely. Some used simple methods; keeping a daily diary; walking a little further each day. Others used oximeters to check their oxygen levels, which allowed them to gauge whether they were improving.

Chris used an oximeter to find out if he improved.

Some found taking their dog for a little walk helpful in their recovery. It helped them set goals, and encouraged them to go out when they did not feel like it. Victor said: “I had this ambition of getting somewhere near the walks that we do with [our dog] Skye in the forest, because they’re beautiful walks. And, yeah, I progressed that way.” Gerry said having a dog encouraged him to go out. Whilst stairs had initially been challenging, he felt that these too contributed to his recovery.

Gerry thought his recovery was probably sped up by the stairs in his house and the walks with his dog.

While some felt they were not doing rehabilitation unless they were physically exercising, others fully embraced the idea that recovery was a long process of coming to terms with what had happened (see ‘Coming to terms with what happened and long term effects’).