You might recognise Claire from our national conferences where she has facilitated sessions on mindfulness and presented on the emotional journey of coming to terms with an MPS diagnosis. Using her experience as a parent of children with MPS, a doctor and a mindfulness teacher, Claire has produced a short video giving tips and advice for looking after yourself during difficult times.
01. It's ok to have strong feelings
These are very challenging times and you may have health and financial worries, worries about operations being cancelled, exams missed, managing a child with behavioural problems, you might worry about missed treatments, homeschooling critical hospital appointments, having a carer in the home, juggling work with home schooling and how to entertain children, keeping family life going, as well as worries about how life is going to be after this crisis. If you can take a moment to stop and recognise what you are feeling you will have a much better idea of how to help yourself. Take one moment at a time.
02. What about worries?
You might well be feeling anxious about you or someone you really care about catching coronavirus. Try to:
limit the time you spend listening to news
particularly avoiding the news in the evening before going to bed so you don't disrupt your sleep
find time in the day to do something relaxing and enjoyable for you
visit the charity Mind for more tips for helping with anxiety.
03. Be kind to yourself
If you are a carer it's vital to look after yourself so that you can take care of others. If you do reach your limit, ask yourself what can I do to help look after me?
Take a break before you need one.
Don't put too much pressure on yourself to have everything in order at home.
Just do your best.
"Take a break before you need one"
04. Find a routine
Our bodies love routine but it's hard to keep it going at a time like this. You could:
try to get up at the same time every day
plan something for each day, whether a hobbie or a task
have a household routine as well.
05. Everyone needs some privacy and space
This can be a real challenge at times like this so talk about how this might work in your family.
"Take time to notice the good moments"
06. Dealing with stress
Everyone shows stress in different ways. Agreeing on what you and they need from others when stressed can be really helpful. Some tips that psychologists give at times like these:
If you've lost your temper, admit fault, say you're sorry and move on.
Be good to each other and listen.
Look for the good in someone else.
Look for what you can agree on.
Try not to have those routine arguments.
Pick your battles.
Take time to notice the good moments.
07. Get your exercise
Physical exercise is a great stress buster. Take time once a day outside or in your home. There are plenty of online classes and if you have mobility issues there are sitting stretches or wheelchair exercises you can do. Be imaginative about keeping active, even if it's just in small ways and try not to sit for periods of longer than an hour.
08. Get some sun
We need light on our skin. If you are stuck in the house try to sit near an open window. We need light to make vitamin D and sunlight also affects our mood keeping us happier.
09. Stay connected
If you're feeling lonely or isolated then connect more with others. Try email, social media, zoom or even by letter. When we have to distance physically we need to lean in more emotionally. Being generous and helping others can make a difference to others but can also help you feel better about yourself.
10. Reach for help
If you're feeling very low or depressed don't be embarrassed to ask for help. GPs are still working and want to hear from you. It's ok not to feel ok. There's help in your local community for those who are shielding and self-isolating, and of course the MPS Society is there for you at the end of the phone, waiting to hear from you.
"It's ok not to feel ok"
This is a really challengeing time for our MPS community and the more positive things we can find to hold on to the easier it is going to be for all of us.
With thanks to Claire Garthwaite for producing this video.
Find more support, information and resources to help you with social distancing and coronavirus if you are living with MPS, Fabry or a related disease visit our dedicated COVID-19 pages.
If you have found this information helpful please consider donating to the MPS Society.
Interested in learning mindfulness to help with stress?
The MPS Society is running an 8 week online mindfulness course for parent carers who would like to learn new ways to handle stress, relax more deeply and increase wellbeing. The course would be led by Claire Garthwaite, a former GP, and parent of two sons who have Hunter’s disease. Claire has been practising and teaching mindfulness for many years. The lessons would include group discussion, teaching and mindful meditations (non-religious). A daily home practice to follow a guided meditation is an important part of the course. If you are interested to find out more and would like to attend a short 40 minute online ‘taster session’ please register your interest here.