Vicki and Matt’s story - managing pain, fatigue, supporting and finding your new normal

Stroke changes everything in an instant, but it is always important to know that there is help and support available.

Pain after stroke can be debilitating and it is important to make sure you do discuss these changes with your GP, your neurologist or your rehabilitation team. There are some options for pain management which might include your GP referring you to a pain management clinic, talking about different medications, or seeing a psychologist that specialises in pain management. As the video shows, you can read more about pain on our eebsite here and here. It is important to get help with managing your pain as it can have an impact of all other aspects of your life.

Fatigueis also very common after a stroke and can be described as a feeling of weariness, tiredness or lack of energy.Symptoms offatiguecan include headache, dizziness, blurred vision, increased pain, aching muscles and reduced coordination and balance. Other symptoms include ‘brain fog’, impaired memory and decision-making, moodiness or irritability, anxiety and depression or low motivation. Fatigue can be exacerbated not only physical activity but also by overstimulation such as being in a loud and noise environment, or being overwhelmed by a busy environment that is very bright and busy such as a shopping centre. It is important to listen to your body and put strategies in place to manage your fatigue levels. Everyone is different but it can help to consider the following:

• Pacing is spreading out the activities you do and using numerous shorter breaks instead of one long break after an activity.

• Planning is understanding what activities you are doing and when, making sure not to group up too many similar activities together. Eg spread out appointments. This also means assessing which activities make you feel more, or less, fatigued for future planning

• Prioritising mean understanding what you need to do and what can wait. If you have a limit to what you can do each day you can plan to do those things which are important and save unimportant things for other days.

Do keep in mind I-Rebound which has some great posts on managing fatigue like this one here, or our blog post on practical ways to manage fatigue by Karen here.

It is important to remember that once you leave hospital, you will still have a solid team supporting you. Reach out to your GP, especially if you are experiencing any new symptoms and make regular appointments. It can be helpful to ask for double appointments, (be aware of the increased cost associated with these) as these can help make sure you have enough time to have questions answered and request the prescriptions and referrals you need. Consider maintaining a list of the questions you may have for your GP, or your neurologist: you can find some examples here of questions to consider.

Depending on the impacts of your stroke, you might also need a range of allied health professionals. Before you are discharged from hospital make sure you talk with your treating team about what you will need and where they will refer you. You can read more about who may be involved in your care, both in hospital and at home here. Remember to reach out to your GP if you develop new impacts once you are home.

It is important to find a good healthcare team. You must have a team who will listen to you and provide you the ongoing support and treatment you need, as well spend time talking about secondary prevention and how to reduce your risk of another stroke. Do not be afraid to seek a second opinion or find someone new if your current practitioner, whether GP or allied health is not a good fit. You need a GP who will follow up referrals for ongoing rehabilitation or allied health input, but who is also happy to talk with you about your current stroke symptoms and provide support for ongoing recovery such as return to work and/or driving. It is vital to find someone you feel comfortable talking about your emotional support needs, and who can link you into community supports and other organisations such as the Stroke Foundation.

Finding the new normal is something that most survivors of stroke will experience during their recovery. It can take time and is different for everyone. It is ok to feel as if you are struggling with this, but there are supports that can help, including your GP, StrokeLine 1800 787 653, peer support groups, a psychologist and friends and family. Many people will work on finding their new normal for some time, and it may not always be what you are expecting initially. There is no right or wrong in this process. Do reach out, you don’t have to go through this alone.

Carers also face many changes and may also struggle with what has happened to their loved one. There are many supports out there for cares as well and it also really important to reach out if you are feeling overwhelmed or worried about your own health and wellbeing. Self-care is so important when you are a carer, you can reach out to services like StrokeLine Ph 1800 787 653, Carer Gateway Ph 1800 422 737, My Aged Care if you or your loved one is over 65 Ph 1800 200 422 or your GP. All these services will help link you in with supports to help you manage your own health as well as your caring role. You can read more here about carer resources and services.

Don’t forget, StrokeLine is here to answer any question you may have and support you and your loved ones after a stroke. Always feel free to reach out and give us a call on Ph 1800 787 653, or an email on strokeline@strokefoundation.org.au. We are open Monday to Friday 9am to 5pm AET and always happy to talk with you.