Self-care

It's a good idea to draw up a list of things that you can easily turn to when times are hard, things that will soothe, ease, relax you. They don't need to be complex or costly or take up a lot of time. The sorts of things people put in their emergency bag include:

• going for a walk

• listening to a podcast or favourite music

• doing a hobby

• rubbing in some soothing hand cream

• lighting scented candles

• phoning a positive and uplifting friend

It's important not to include things like alcohol or chocolate as they can bring problems of their own!

"It takes courage to say yes to rest in a culture where exhaustion is seen as a status symbol." Dr Brené Brown

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"Almost everything will work again if you unplug it for a few minutes. Including you." Anne Lamotte

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Trying to get some structure to your day will help you to ring fence time to rest, relax, play. It's a vital part of recharging your batteries. Even machines get refuelled and serviced. You need time to be 'unplugged.' The opposite of play is not work. The opposite of play is depression. Playtime is vital.

You might even need to ask for help from others to ensure you do get time out - maybe hire a cleaner once a fortnight, or ask a friend to spend time with your loved one.

Being sleep-deprived is as detrimental to our underlying health and wellbeing as too much stress. Finding ways to ensure quality sleep is essential. Sleep slows down the ageing process and improves our ability to cope.

It might be that you need to sleep in a separate room from time to time. I sometimes get up very early and go to another room for a couple of hours of really deep untroubled sleep and that sets me up for the day.

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Some helpful ways to improve your sleep:

• go to bed when you are fully tired

• do nothing in bed other than sleep or make love - no iPhones or TV or laptops, etc

• get up at the same time every day - sleep loves routine

• stop clock-watching; it's quality of sleep that matters, not quantity

• if you can't sleep, get up and do something relaxing or gentle or monotonous

• take no naps

• replace negative sleep talk with positive statements that start to tell a different story about your sleep achievements

The Effortless Sleep Method:The Incredible New Cure for Insomnia and Chronic Sleep Problems (The Effortless Sleep Trilogy Book 1) by Sasha Stephens 

It is so very easy for your world to shrink when you are carrying the carer's load. It's vital that you find ways to metaphorically lift your eyes to the horizon and see the bigger picture.

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Don't compare yourself with others - that way dissatisfaction and depression lies. Try to reflect each day on two or three things that have gone well. 

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Adjust your pace and expectation - everything with Parkinson's happens more slowly and there are often setbacks. Allow more time for everything, and praise each other for the daily achievements.

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Is it a hanging offence? This was one of Mum's favourite questions to ask herself when something went wrong, and, thankfully, the answer is rarely yes!

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Connect with others - your local Parkinson's group; others who have similar interests - maybe you curl or swim or sing or golf or craft. Don't let these connections slip.

Gratitude has been shown to have many positive effects on our wellbeing. Finding time to reflect on the good things, however small, can have a disproportionately positive effect on how you feel.

Try to list 3 things each night that have been OK that day, things that you are thankful for. Write them down if you can, and the story of positives will slowly grow.

Make time to connect with your 'tribe', the people in your circle who are full of acceptance, lacking in judgement, who 'get' your situation and will allow you to feel the pain and frustration of it - and then help you find ways to cope. They fill you up and love you just as you are, whenever, however, they laugh with you and they cry with you without fear.

Stress is literally a killer. It puts a strain on your heart and on your immune system and takes years off your life. But it's not always easy to find ways to manage it.

• Making sure you have some 'Me Time' is vital, maybe to dip in to your virtual emergency bag, maybe to spend time with your tribe.

• Time spent in nature has a measurable impact on stress levels and the damaging chemicals stress releases, so even just a short stroll around the garden can make a huge difference.

• Breathing techniques help too. A simple one is 'square breathing': breathe in for a count of four, hold for four, breathe out for four, hold for four, repeat.

• Sleep - nature's healer. Make sure you get enough.

The state of  flow is that lovely feeling that you might be finding hard to remember just now, where you really lose yourself in an activity and the time just flies by and you emerge energised, enthused, refreshed. That probably feels impossible, but stop for a minute and try to recall the things that made you feel like this in the past, maybe when you were a child. Often a hobby will do the trick - crafting, photography, playing a musical instrument, doing a jigsaw.

For me, creating this website and writing the blog are the place where I lose myself to the feeling of flow, and I emerge, remarkably, even late at night, even when otherwise exhausted, with my batteries recharged, feeling more hopeful and energised than I did before. Find your flow - it really helps.

We all need some moderate exercise every day and it doesn't need to be time consuming or costly. A brisk walk is as good as anything and it will lift your mood as well as giving physiological benefits. Go Gym is an organisation that specialises in exercise for people living with chronic illnesses and their families. Check it out here and try their 48 hour free trial: https://www.gogym.uk 

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Trying to eat a healthy, colourful diet will make a lot of difference to how you feel. Drawing up a meal plan for the week can make meals and cooking more manageable and there's less food waste, too, which is great for the finances!

Self-compassion is based on a Buddhist principle that's all about "being open to and moved by one’s own suffering, experiencing feelings of caring and kindness toward oneself, taking an understanding, nonjudgmental attitude toward one’s inadequacies and failures, and recognizing that one’s own experience is part of the common human experience." Dr Kristin Neff

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Sounds good? It is good. Taking this stance of being caring and kind towards ourselves helps us deal with stress and anxiety, allows us to cope better with emotional distress, leads to better self-esteem and improved self-efficacy. But many of us have a harsh critical inner voice that gets in the way; often we feel we have to meet impossibly high standards that we set ourselves, and give ourselves a hard time about any failings in a way that we wouldn't dream of doing to others. It's as if somehow we will become selfish, we will be slacking if we give ourselves any sort of consideration. But in the long-run that is actually damaging and self-defeating.
 

See below for ways to increase your self-compassion.

You need to set boundaries to survive. You cannot be all things to all people. You have to learn to say NO. You have to give yourself permission to have time for yourself. You need to major on the things and the people that feed you and let go of the things and the people who create a drain.

Find a kind voice - how would you speak to a friend who was in distress? Try using that gentle voice when you are finding things tough. When you notice yourself being harsh, pause, take a breath and offer yourself a different, gentler voice.

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Give yourself a break - a compassionate break. This involves taking a few moments out to breathe deeply, or taking a moment to put a gentle hand on your own arm or heart and offer yourself some gentle encouragement.

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Become part of humanity - everyone has failings - why should you expect yourself to be any different? Try to become more accepting of your shortcomings, don't judge yourself. Ask yourself, "What do I need here?"​ and think how you might set about meeting that need.

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Be honest with yourself - again, this is not about judging - we are all fallible - it's about finding a balance, giving yourself honest feedback and working out what you could do differently next time.

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Recognise your strengths - we are all quick to spot our failings, but take a moment to list the things you do well, and celebrate those strengths, begin to notice them more and give yourself credit for them - you won't end up becoming smug, but you will end up becoming stronger.

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Give yourself permission - to do something you enjoy. This is not about being selfish or indulgent, it is a vital step that will recharge your batteries and help you to have a better relationship with yourself.