Looking after your mental health
While many of the population are coming to terms with a new way of living due to Covid-19 and learning how to cope with feeling isolated, this is not something new for the rare disease community, and even more so for patients with porphyria. People with all porphyrias, but especially EPP/XLEPP and CEP are likely to have suffered from aspects of feeling isolated before, and some will be amazingly skilled at adapting and doing things differently to try maintain some elements of normal day-to-day life.
Despite this, living with a rare disorder or coping with circumstances beyond your control can have a detrimental effect on mental wellbeing. Anxiety, stress, depression, low mood and emotional exhaustion have all been identified as occurring more in people living with long-term health conditions, along with an impact on quality of life.
- Stress: Social isolation, reduction in physical activity, unpredictability in routine or work/school patterns can all contribute to increasing stress.
- Anxiety: Anxieties may arise over how to cope with changes to daily routines, how to get shopping, whether you can manage financially, ongoing care arrangements with health providers, or how to get support with medication/treatments.
- Frustration, anger, heightened emotions or depression: Restrictions on seeing family, friends, boyfriends/girlfriends and work colleagues can all have a negative impact on mood and feelings, and can also have an impact on sleeping patterns.
So, whatever the circumstances leading to a negative effect on mental wellbeing, it is important to acknowledge the subject and do all that we can to keep as happy and well as possible. It can be really easy to fall into unhealthy patterns of behaviour which in turn can make you feel worse. If you’re feeling a little overwhelmed, why not try the following tips:
Focus on the things you can control
When you have little control over the big stuff, try not to spend time focusing on them. Try to divert your energies towards things you can control: what you eat, how much sleep or exercise you get, what you do with your day, and small and manageable changes you can take to make yourself as well as possible.
Try making a list of the things you want to achieve that day, month or year. Think about how you might be able to do them, then break the list down into manageable tasks or actions.
Connect to people, talk to others, ask friends/family for support
Think about how you can stay in touch with friends and family while at home. Phone calls, video calls or social media are all readily available; many of you will already be active on social media. Make use of them to connect with people you normally see often or even connect with old friends.
Look after your body
There’s a known connection between physical health and mental wellbeing. Even if you are restricted to what you can do, try to make an effort to do some level of activity every day. For some people that might be a run or a cycle, but for some it will be simply climbing the stairs a few more times in the day.
If your diet needs attention, try to make small changes that you will be able to stick to. You can keep adding small changes once you know that you can manage the first ones. Keep it simple, try swapping a bag of crisps for a portion of fruit or exchanging white bread for brown!
Good quality sleep makes a big difference to how we feel mentally and physically, so it is important to get enough. Try to maintain regular sleeping patterns, avoid screens before bed and cut back on caffeine.
Be kind to yourself
When you’ve had a day when you’ve not managed to do all the things you wanted to do, or when you feel like you’re not succeeding, try not to admonish yourself for it. Don’t feel guilty and don’t criticise yourself. Realise that it didn’t work that day and try again the next day. Be kind to yourself!
Do something you enjoy
No matter what other demands are upon you, try to take a little time to do something that you enjoy. Whether that’s taking a bath, reading, watching films, yoga, crafting or doing something more energetic, it’s important to take some time for you.
Access support from other sources
- Mind: mind.org.uk
- Anxiety UK: anxietyuk.org.uk
- NHS: Every Mind Matters: nhs.uk/oneyou/every-mind-matters provides simple tips and advice to start taking better care of your mental health
- No Panic: nopanic.org.uk
- SANE: sane.org.uk/support
- Young Minds: youngminds.org.uk
- Samaritans: samaritans.org
A number of discussions at our festival event in Manchester focused on the subject of mental health and wellbeing. Presentations are gradually being uploaded to our YouTube channel, so please do keep checking to see what we’ve been uploading. https://tinyurl.com/ybhzf6ef.