Social difficulties
- Your partner or family members become irritated or impatient.
- You see your friends and family less. This makes you feel lonely.
- You feel pressure to return to work despite your poor condition.
- You are concerned about your work as a self-employed person because you have no or less income.
- You are concerned about keeping your job.
- People stay away from you or treat you differently.
Psychological complaints
- To be forgetful
- Loss of concentration
- Difficulty doing several things at once
- Difficulty reading
- information processing
- To be irritable
- Change in mood: often anxious, tense or depressed
- Insomnia
- Troubled by memories or dreams of past experiences that bring about fear or tension
Tips for dealing with long-term complaints
Talk to friends or family. Tell them how you are and what you are experiencing.
Explain to people around you what the disease does to you. How difficult it is for you to acknowledge that things are not going well. Tell them that you need time to recover. Then people will understand your situation better and give you time.
Contact with fellow sufferers is nice for many people. Fellow sufferers recognize your story and have been through the same thing. You can find fellow sufferers at the patient organization PostCovid NL and in various groups on Facebook.
Don't compare yourself to others. Everyone reacts differently to an infection. For example, some people recover slowly. Others seem to recover faster, but sometimes have recurring symptoms later.
If you have long-term complaints, this will affect your work and private life. Give yourself the space to grieve. It takes time to accept that your life will look different temporarily or for a longer period of time.
For example, you can write down your thoughts. Or keep a diary of how you are doing, how your symptoms are developing and whether any important things have happened. This is also useful during conversations with your GP, for example.
It is difficult if your familiar way of relaxing is not possible due to your complaints. With some adjustments to your hobby or sport, you may still be able to relax. Or think about what you like to do and can do with your complaints.
Do you have concerns and doubts about your (permanent) physical and mental complaints? Discuss them with your family doctor, he or she will help you further.
Social and psychological help
In addition to physical complaints, due to Long COVID or long-term complaints after vaccination, you may be worried, moody and irritable, feel lonely, or even depressed, anxious or angry. Difficulties may arise at home or at work due to your limitations. It can be difficult to find out where you can go with your concerns and how you can discuss them.
That is why Q-support and C-support have developed a care network map. This provides direction in finding possible social and/or psychological help. The possible social and/or psychological support and care is divided according to the circle model. In this, the patient is central and is surrounded by possible sources of support. The easily accessible sources of support are close to the patient, further out the care becomes increasingly specific and specialized. In this way, you can easily gain insight into where you can first seek support and what can come next (possibly after referral from the GP). The possible help and care is divided into three areas of life: Medical, Social and School/Work/Financial.
Care network map
Help guide
In addition to the care network map, a digital help guide for social and psychological help has been developed. This digital roadmap provides direction to appropriate care options based on needs. The needs are composed based on problems and/or obstacles that you as a patient with Long COVID or long-term complaints after vaccination may encounter. Or as a parent or relative of someone with a post-infectious condition.
C-support has attempted to represent the national care and support options as completely as possible. Local initiatives have not been included. C-support is not responsible for the quality of the services provided by the organisations mentioned.
Young people and Long COVID
Many young people with Long COVID suffer from psychological complaints and stress in addition to physical complaints. They need support with this because they are insecure and have many fears due to their age. Suitable support can also be found for young people via the Hulpwegwijzer.
Support for family and relatives
Long COVID or long-term complaints after vaccination not only affect the patient but also the patient's network; partner, children, family and friends. For a patient it may have been a difficult and uncertain time. But also for loved ones. This may be due to trauma from a severe course of the disease, but also due to the failure of a parent and/or child who is struggling with long-term complaints. At the same time as all the worries and uncertainties, a loved one may suddenly have more (care) tasks. Combining care for a parent with work, school or family life can demand a lot from someone. There is often more stress, more responsibility, work and extra pressure.
Living Loss
For people affected by a post-infectious disease, many everyday things are no longer self-evident. This is a hard blow and it takes time and effort to process this.
The loss and pain that this brings is also called 'living loss'. You can experience this loss in many areas. Think of the future dream or nice job that you have to give up. That bigger house that is no longer coming. Your favorite sport, that you can no longer practice. The father or mother that you can no longer be, as you had imagined. The friends that you lose because you no longer come to their parties.
Learning to live with this and accepting it is very difficult. Your environment does not always understand this.
Webinar
On Saturday, January 28, 2023, Alfons Olde Loohuis, Medical Advisor Q-support and C-support, spoke on behalf of Q-support with two experts in Living Loss.
Manu Keirse, Emeritus Professor of the Faculty of Medicine at the Catholic University of Leuven, tells us more about Living Loss. And Gerda van Hemert, psychosocial therapist specializing in grief, tells us more about how to deal with this.
This webinar can also offer added value for post-COVID patients.
What can I do as a caregiver?
For others it is not always clear what they can do. Discuss together how they can help you.
Then you can continue to care for the other person for longer and you can handle more. Below are the tips to continue to take good care of yourself.
- Find a distraction. It is hard when you are only concerned with your loved one and the grief. Distraction helps to get through the day.
- Create rituals that you perform at set times. Such as lighting a candle, listening to beautiful music or reading a certain poem. You can also do this together with others, live or with video calling.
- Ask for help in time. If you feel like it's too much.
- Bring structure to the day. Plan as many times as possible when you are and are not caring for the other person.
- Set your own boundaries and try to stick to them. This also applies to the amount of time and attention you give to others.
- Eat regularly and healthily. Also try to get enough sleep and go to bed at regular times.
- Do things that give you energyFor example, walking, reading a book, being creative or calling someone.
- Ask for help. Neighbors, friends or family often want to help. For example, with cooking, grocery shopping or babysitting for a few hours. Are you caring for a loved one for a longer period of time? Ask 'auxiliary troops' to help at fixed times. Then you don't have to ask for help every time and that gives peace of mind.
- Stay in touch with the people who support you during this difficult timeYou can also ask the other person to contact you at set times.
- Post Intensive Care Syndrome: You may be suffering from nightmares or bad memories, anxiety, panic and depression after a period of intensive care. Usually the complaints go away after a while, but sometimes they don't. This is called Post Intensive Care syndrome: Watch an explanatory video.
- Tips for (young) caregivers:
Do you provide care for a loved one in combination with work and/or school:- Inform your manager that you provide informal care. Your employer can then take this into account and provide support if necessary.
- If you go to school: tell your mentor at school about your home situation. He or she will then better understand that homework is not finished at some point, or that your thoughts are not focused on the lesson.
- Talk to other young carers. People in a similar situation often offer support and give tips. Caregiver support organizations also organize meetings for peers.
- Also look up PostCovidNL with information for relatives.
- Op Lekkerinjevel.amsterdam state one free online training for people who support a loved one during recovery from COVID-19. You will receive tips and exercises that can help you to better support the other. But also about how to continue to take good care of yourself.
- Stammtisch has also created a platform for (ex) corona patients to talk to fellow sufferers. The group table is also there for family, those involved and healthcare staff. You can register for this register here.
- Do you regularly help someone with a disability, illness or (mental) complaints? For practical information about, for example, financial matters, (legal) advice and a listening ear, you can contact the Family care line call (030–7606055) or reach us via WhatsApp (06–27236854). This telephone line is available weekdays from 9:00 to 17:00.
- Informal care provides tips and has experience stories for relatives. The website specifically focuses on young and working carers.
- De Care ladder Informal care shows in five steps where you can get help as a caregiver.
- Click even more helplines from organizations and institutions who can help you further.
- Read more about the Post Intensive Care Syndrome-Family and how the family can also suffer from this.
- On the website Rouwinformatie.nl you will find valuable, practical information and recognizable stories about grief clearly arranged in one place.
Since May 2024, PostCovidNL has further expanded the range of peer support. In addition to the existing group sessions, PostCovidNL now also offers the option of one-on-one peer support. This new offering can be of great value to both patients and caregivers who are looking for personal support and recognition from others who are also dealing with Long COVID.
For a complete overview of the possibilities and to get in touch with fellow sufferers, please visit the website of PostCovidNL.
