Common problems you might experience after your critical care stay

Returning home from hospital is a major positive step in your recovery following your illness, however it can be daunting to have less support and advice than you had access to in hospital.

It is normal to find some daily activities more difficult following an admission to critical care.

It is important to take your recovery one day at a time and listen to your body. It is difficult to put a timescale on your recovery as everyone recovers differently. Recovery can also depend on, how long you spent in critical care, the nature of your illness and how fit and active you were before your illness.

The resources below are designed to help you understand and manage your symptoms.  Click on the tabs below to find more information about the cause of the symptoms and how to manage them:

The advice below is designed for managing long term breathlessness. If you have rapidly worsening breathlessness and/or chest pain, please seek urgent medical assistance.

Why do I feel breathless?

Often when people are in critical care they need the help of a ventilator, this is the machine that helps you to breathe. After being ventilated it is normal to experience breathlessness, as your body adjusts to having to breathe on its own again. This can sometimes be made more difficult if it was a problem with your chest that bought you into critical care, or you developed a chest infection during your admission.

You may also find you get more breathlessness than before your admission due to general weakness and fatigue that can happen after being in critical care. 

The feeling of being out of breath can be very scary, this can cause anxiety which often makes breathing more difficult. When this occurs, you can find yourself in a cycle that is difficult to break. Below are some techniques that can help you to break this cycle. Everybody finds different techniques and strategies helpful, it is important to explore different options and find what works best for you.

Breathing exercises and positions of ease

If you would like further information regarding managing your breathing after critical illness, please see link below:

Breathing after critical illness

Managing weakness

Why do I feel weak?

It is very common for people to experience generalised muscle weakness following a critical care admission. This can affect lots of different aspects of every day life, for example your:

  • mobility
  • ability to climb stairs
  • ability to wash and dress yourself
  • prepare your meals
  • the dexterity in your hands.

You may also experience stiffness within your joints which may cause you pain. This is normal and the whole team will work with you to regain your strength, function and independence.

There are a number of factors that can contribute to muscle weakness following a critical illness. During the time you were very unwell it is likely that you spent the majority of the time in bed, especially initially. When you don’t use your muscles, they can waste away very quickly and cause you to become weak. This is made worse when you are very unwell as your body prioritises fighting the illness, rather than maintaining your muscles.

Some people may also experience a form of nerve damage following a critical care admission, this can make it very difficult to activate and use your muscles.

Muscle weakness and decreased mobility

As you recover you use different equipment to help you get out of bed, join in with everyday tasks, stand and walk.

The following links shows some exercises you could do to help further regain strength and mobility.

When you are discharged from hospital you may go home with a walking aid, such as a stick or zimmer frame.  While these aids can be very useful in helping to keep you safe they can be cumbersome and restrictive. By increasing your physical strength and improving your balance you may be able to decrease your reliance on your walking aid. The exercises below are designed to support you with this.

When you initially begin the exercises, it is important to pace yourself, doing too much too soon can make you tired and leave you feeling weaker. Begin by doing a small number of each exercises, such as 5-8 repetitions, once a day. You can increase the difficulty over time by increasing the number of repetitions, doing the exercises more than once a day, or adding hand/ankle weights.

You’ll know you’re doing the exercises correctly if you feel a slight ache in your muscles, but not a serious pain. You’ll know if doing the right number of exercises when the last few repetitions of each exercises are effortful, but not too difficult. 

It is always important to warm up and cool down with any exercise.

Strengthening exercises

Seated exercises 

Arm exercises

Standing exercises 

Balance exercises

When doing the balance exercises always make sure to prioritise your safety. Make sure you stand near something sturdy that you can hold onto if you need to.

Balance exercises 

Advanced balance exercises 

There can be other factors contributing to decreased mobility aside from strength and balance, for example fatigue and breathlessness. Please see the sections on these topics for additional information and advice.

If you have tried to decrease your reliance on your walking aid but haven’t been successful or feel unsafe trying to do this alone it may help to have a physiotherapist see you at home. You may have been referred for this at the time of your discharge from hospital, if not please contact your GP for a referral to Physiotherapy.

If you have a walking aid at home that you are no longer using and wish to return you can drop it:

Why do I feel more tired?

It is normal after a critical care admission to find everyday activities much more tiring, both physically and mentally. During your admission you may have been sedated and will probably have spent most of the time in bed. When you begin having to do things for yourself again it is a big adjustment and can be very tiring. Fatigue can last between three or four months or for some up to a year or beyond.

The importance of pacing yourself

Pacing yourself is very important in learning to manage your fatigue, it is all about doing things in small, manageable sections and allowing yourself sufficient rest in between. Over time you can gradually increase how much you do in a day and build up your stamina.

It is natural to have some days where you feel more tired  and need more rest than usual. You will likely experience some bumps along the road during your recovery, but it is important to find the balance of pushing yourself and taking the rest you need. If you don’t pace yourself you may risk falling into the “boom bust cycle”. This occurs when you have a good day and try to do as much as possible, leaving you more tired, needing to take more rest and being able to do less for the following days, this can lead to a gradual decline in your stamina.

This is why even on a good day it is still important to pace yourself, so as not to make yourself too tired for the following days. By pacing yourself on good days and allowing yourself the rest you need on bad days, you can continue to make improvements to your fatigue over time.

When pacing yourself it is important to prioritise the activities that are most important to you. Try not to tire yourself out with activities that are less important or less enjoyable.

How to build up to doing more?

It can be useful to monitor how much you’re doing and when you feel more or less fatigued, for example it may be useful to keep an exercise diary. You can then set yourself small, manageable goals and gradually build up.

Here is an example of an activity diary

The following links give some further advice on managing fatigue.

It is common to have difficulty communicating when in critical care. This can be due to breathing tubes preventing you using your voice, trauma/damage from breathing tubes affecting your vocal cords or injury to your brain that affects speech and language.

It is common to have changes to your voice after being intubated. This is because the breathing tube passes through your voicebox and can cause trauma and irritation to your vocal cords and other structures around them. This often results in temporary changes to your voice. The Speech and Language Therapist will assess your voice function, advise you regarding any strategies/exercises you can do to help and if necessary arrange for an Ear Nose and Throat (ENT) assessment as well.

The following link provides more information relating to this.

Common eating problems and weight loss

It is common during and after being in critical care to struggle to eat and drink for several reasons. These can include not feeling hungry, feeling full quickly, feeling sick, feeling tired or weak, your smell and taste changing. It can take some time for your appetite to return to normal.

If you are struggling with holding items to help you eat and drink due to weakness or injury after critical care there is lots of equipment that may help. If you have an occupational therapist involved in your care they will be able to help advise or an internet search of feeding / eating and drinking aids should bring you to various options that can assist.

It is common for you to lose weight and muscle during your critical care stay. Eating and drinking well will help you get better.

If you are experiencing some of the problems mentioned above you will find help and guidance on how to overcome these difficulties on the following links

*Please note this link contains some information related specifically to those living in Cardiff and Vale. Please contact your individual health board if you require specific information about what is available in your local area.

Swallowing difficulties 

Some people will have difficulties swallowing (dysphagia). Swallowing function can also be a result of trauma from breathing tubes, general weakness and damage to the brain and nerves. Swallowing involves the same muscles as voicing and talking. This means that as with your voice, it is common for your swallowing to be affected by having a breathing tube in place. This can make it difficult for people to swallow food and drink as they usually would, and at times people also struggle to swallow their saliva.

Part of the Speech and Language Therapist’s job is to assess swallowing safety and recovery and make sure that people are getting their food and fluids in a way that is safe for them. If your swallowing is affected it can result in food and drink going the ‘wrong’ way and causing a chest infection. This might mean that you have to start eating and drinking slowly and the types of food you have may be limited. The Speech and Language Therapist will work with the Dietitian to make sure you get enough food and fluids safely. 

Click here for further information swallowing difficulties (dysphagia) after intubation.

Weight gain

Alternatively, some people will struggle with weight gain post critical care admission. If you are looking to reduce your weight, it is advisable to wait until you are feeling well and have recovered from your recent hospital stay. A slow and steady weight loss is preferred. The resources below will provide you with further information and support.

 

Participating in activities of daily living such as showering, making a drink or preparing a meal, will not only help to improve your independence and well-being but also improve muscle strength in your arms and legs.

Increasing your activity levels will be beneficial alongside any exercise programme, but it is also important to get a balance and ask for help when you need it and not to push yourself too hard.

You may need to adapt the way you do some of these tasks or use equipment to help, an Occupational Therapist can help with this.

After leaving hospital you may experience problems with your thinking and memory.

You might find yourself:

  • Forgetting things that you would have remembered before
  • Noticing that your thinking has slowed
  • Finding it difficult to plan and organise as well as you used to do
  • Finding it more difficult to make decision

Several factors can contribute to thinking and memory problems after a period of physical ill-health, including:

  • Fatigue
  • Pain
  • Low mood
  • Anxiety
  • Effects of medication

These difficulties will often get better over time. However, if they persist for more than three months following discharge home, please speak to your GP for further advice.

For more information, please see the link below:

The above information gives further advice on memory and cognition, there is reference to COVID-19 but information and advice remains applicable after a critical care stay.

Whilst some patients might not be able to recall their hospital stay, others might recall frightening and distressing experiences such as critical care delirium.

Critical care delirium is a temporary state of acute confusion caused by medication, sleep deprivation, pain, infection, lack of oxygen and other medical reasons. Patients experiencing critical care delirium:

  • Cannot think clearly and have trouble making judgements
  • Find it hard to pay attention and remember information
  • Find it hard to understand what is going on around them and might not know where they are or recognise those around them
  • May seem agitated
  • Experience an altered perception of what is happening around them including hallucinations, nightmares or dreams which can seem very real and frightening
  • May behave differently, for example appear suspicious, paranoid or mistrusting of those around them. Behave aggressively towards others or alternatively withdraw into themselves
  • May fluctuate in their presentation with symptoms of critical care delirium appearing to come and go throughout the day

Although this is usually a temporary syndrome, it can take some time for symptoms to fully resolve. The distress and fear experienced can leave some patients feeling frightened, angry, lonely and ashamed. Some might experience flashbacks, vivid dreams or nightmares that can impact their day to day lives. It can also have a profound impact on friends and relatives.

Whilst some people may not want to remember what happened and may not want to talk about it, others may find it useful to:

  • Talk to others about their experiences
  • Write down what they can remember about the time that they were ill to help collect together their memories.
  • Speak to those who cared for them

There is no right or wrong way to react. It is anticipated that for many, these difficulties will resolve over time. However, if any of your symptoms persist then please seek further support from your GP.

For further information, please see the link below:

Being critically unwell can be a traumatic experience and may take some time to come to terms with afterwards. You might find yourself experiencing a range of different emotions following your discharge home. This is normal and could be due to the illness, your time in hospital or the treatment used to help you get better.

In the first month or two after discharge home it is not unusual to:

  • Feel upset and tearful
  • Lose interest in those things you once enjoyed
  • Feel irritable and snappy
  • Feel guilty for the worry that those around you have experienced
  • Feel worried about getting ill again
  • Feel anxious or nervous
  • Experience panic, often relating to reminders of your hospital stay
  • Experience intense, vivid dreams or nightmares that feel real
  • Experience unpleasant memories of your stay in hospital (flashbacks)
  • Feel as if you’ve changed as a person

Most psychological symptoms will go away by themselves over time. It might help to:

  • Maintain social connections with friends and family
  • Do the things you find enjoyable
  • Focus on the things you have control over
  • Talk to others about your experience
  • Establish a daily routine at home that works for you
  • Avoid overexertion, resting when needed
  • Take time out to relax
  • Use coping strategies that have worked well for you in the past
  • Stay active and take regular exercise with guidance from a doctor
  • Eat and drink healthily
  • Get as much sunlight, nature and fresh air as possible
  • Use Wellbeing apps

If after a month or two following your discharge home your symptoms continue to impact on your life on a daily basis, please seek advice from your GP.

For more information, please see the link below:

Sleep disturbances are common after a period of critical illness. Patients often report difficulties falling and staying asleep. Some also report experiencing intense, vivid dreams or nightmares that feel very real.

Although it can take some time to get back to a normal sleep routine, the following tips may be helpful:

  • Plan to go to bed at the same time and wake up at the same time each day
  • Try to get up and spend time in another room when not sleeping if possible
  • Make your bedroom a comfortable place to sleep – keep it dark and cool if possible. A relaxing scent such as lavender might help
  • Avoid caffeine late in the day and instead try a warm milky drink before bed
  • Avoid alcohol. Although it can initially make you feel sleepy, it can prevent restful sleep
  • Unwind with a relaxing bath or shower if possible
  • Listen to the radio or read a book
  • Avoid screens like your phone or TV for an hour before bed

If you are having trouble sleeping your GP can give you further advice, but things should return to normal as you become stronger and more active. Further information is available on the link below.

Some people experience changes to their appearance for example hair loss or thinning / change in hair quality in the weeks and months after a critical care stay. This can be caused by a response to the stress that the body is exposed to during an illness. This is quite common and should start to recover over time. A change in appearance caused by hair loss can alter body image or affect confidence.

It could be helpful to speak to your pharmacist, GP, barber / hairdresser about advice that may support you through this change.

Some patients may also find changes to their nails and skin. These should recover over time. For more information regarding common changes to hair, skin and nails following critical illness and how your diet may help, please see the following link:

For more information about alopecia please see the following link for the National Alopecia Areata Foundation.

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