Once you've accepted that you or a loved one has PSC, you can move on and get on with your life, and not let the thought of PSC get in your way or stop you from doing and achieving things.
Develop strategies to manage symptoms
You can’t live life the way you did previously, so develop new strategies to manage your symptoms. For example, if you get very tired and need to rest, then rest, without feeling guilty. Plan in rest time after activities and stick to it! That’s not always easy when you have a full-time job, or you are looking after children and so on, but look for ways to make your life easier, such as online shopping, strategically-timed movie watching, or making sure you factor in rest time on your days off.
Take control of your healthcare
Being informed about PSC and being prepared for your appointments can help you take control and reduce stress. Keeping a file of your current medications and test results readily available for discussion at your routine PSC appointments is one way of doing this. This is especially important if your tests are requested by different medical professionals in various hospitals or surgeries, because there is not universal access to results across the NHS. Having all the information in one place also makes a difference when you are dealing with various agencies applying for financial help or arranging insurance.
STRATEGIES
Positivity toolbox
Karen Rockell, former Trustee of PSC Support, has created a positivity toolbox to help you develop strategies to help you maintain a positive outlook on life.
What is a positivity toolbox?
It can be a real box, or bag, or ideas all in your head.
What goes in your positivity toolbox?
That’s down to you. What works for you might not work for someone else; it’s a personal choice, but look at things that help you lead a happier, longer and healthier life.
Watch Karen Rockell’s video on building your positivity toolbox:
The resources mentioned in the video are incorporated below.
Be positive
- Look for opportunities to be kind to someone
- Smile at people
- Look for the good in people
- Write letters of thanks either real or in your head
- Create a gratitude diary
Do daily mindfulness breathing exercises
- Helps release tension
- Detoxifies your body by releasing toxins
- Relaxes your mind and body
- Aids a positive mood
- Massages internal organs, especially the liver
- Increases muscle
- Strengthens the immune system
- Exercises the heart and strengthens the lungs
- Assists in weight loss
- Boosts energy levels and stamina
Listen to music and watch films
Different kinds of music can suit your needs at different times. Music can:
- Energise you
- Make you smile
- Calm you
Watch films that will:
- Inspire you
- Make you laugh
- Make you feel good
Resources
Engage with people who uplift you
- Choose to spend your time with people you enjoy being with
- Find a mentor – this should be someone you find inspiring who is willing to help you
- Be part of something bigger, for example getting involved in PSC research.
Resources for positive relationships
Keep learning new things
Learn about PSC
- Knowledge is power! We're glad you've found PSC Support!
Learn something new, that's not PSC-related
Participate in regular exercise
- Raise your heart beat for a minimum of 10 minutes
- Exercise daily – little and often is better than large and infrequent
- Choose an exercise you like doing!
Exercising on low energy days
It is important to try do a little bit of exercise even when you are having a period of low energy. There are little things you can do to keep yourself supple, such as chair-based exercise or using resistance bands.
Benefits of developing core strength
- Improves your posture
- Gives stability to your internal organs
- Supports your breathing
- Increases your flexibility
Do I need formal psychological support?
Some people manage perfectly well without formal psychological support but there may be times when people may need to speak to somebody.