It can take any format … Here are a few suggestions:

Diary – It is completely private and all yours to jot down … Whatever you want – from dreams and desires, to fears and reality.

For some a diary is too private and you want to share your journey with the world, Tumblr, Facebook and Twitter, WordPress are all good platforms. Just be aware of what you post.

Letter writing – writing your thoughts down in the form of a letter. Or writing to someone you’ve not seen in a while!

Poetry and storytelling. Poetry, lyric writing and storytelling is a fantastic way of self-expression.

Unleash your inner creative soul, creativity comes in many different forms and, is a great way to bring calm. There are so many variations of art. Some of these include:

Photography. If you have a garden, why not zoom in on a flower, or nature? If you live in a flat, you could open a window and capture the sky. If you live with other people, you could start your own visual diary by photographing the activities you and your family get up to.

Photo collage is where you create a piece of art using photos and magazines; you can, incorporate different colours to reflect different emotions and tell a story.

Colouring in; we tend to associate this as a childhood past time, but many adults find it relaxing.

Keeping as active as you can is important not just for your physical help, but your mental well-being to.

The physiotherapists of the neuro muscular centre in Winsford, Cheshire, have put together a series of exercises that are tailored specifically for those affected by chronic fatigue and muscle degenerating conditions, such as muscular dystrophy and mitochondrial disease.

www.nmcentre.com

If you are feeling a little stronger in your abilities, perhaps try an exercise DVD, such as Yoga or a faster paced one.

If you are feeling a bit more energetic, there are many exercise videos to be found on you tube.

Exercise releases positive hormones in the brain.

There is no shame in accepting help
Sometimes pride, denial and stubbornness can stop us from looking for and accepting support when it is available. There are many resources where you can get help. This could be GP’s, consultants, networks with an interest in your particular diagnosis and charities.

There’s a song for every feeling. Whether it’s celebrating a successful day or shutting off your thinking and just let the tunes flow, music is always welcome. For those lucky enough to have the skills to play an instrument, this can be a great release for your emotions and creativity. You don’t have to be musically blessed. It’s about you finding time to listen to or make music that is special for you.

Music is a great distraction. Whatever your taste, you can rock out, have a sing along with the musicals, dance your heart out till you pop! we all have different genres, artists and bands we like, perhaps a song that reminds us of a particular memory or person, a special time in our lives. It’s important to remember that others in our household may not appreciate the same fabulous music as us, so plug in your headphones and carefully whack up the volume!

Sometimes when your symptoms worsen you may find that you can become panicked and your anxiety increases. To manage the stress of this, a technique that may help to calm your nerves, regain focus and ease symptoms. Breathe in (visualising a light of positive energy being inhaled) through your nose. When ready, release this breath (visualising negative energy leaving the body) through your mouth. Repeat this until feeling calmer or the pain has eased. This is also good for high blood pressure and easing symptoms of stress.

Meditation and mindfulness can also be helpful and relaxing.

Keeping calm in a crisis, is hard. Your mind can leap from scenario to scenario, imprinting fears.

If someone annoys or upsets you on social media, as that seems to be the new way of socialising, it can help to take deep breaths and count to 30. If the individual/s continue, then block them.

It can help to talk any anxious feelings over with a trusted friend or family member. The chat doesn’t even have to be about anything specifically deep, you can discuss tv, music, books… Anything, the comfort comes in another’s words and knowing you’re not alone .

Turn the tv off, listening to depressive news bulletins all day will drag your mood down and raise stress levels.

Taking time to be quiet, perhaps enjoying nature can help you appreciate the small yet beautiful things in life.

Having things to look forward to and plan can give life a sense of purpose, mindfulness might be something to experiment with. The Practice is about living in the moment.

Embrace every moment.

Escapism is a powerful tool. If you close your eyes when in a comfortable position and imagine your favourite place, you can focus on the senses eg colours, sounds, textures etc, rather than your symptoms. You might visualise a beach, a forest, the sounds of birds, a waterfall. This takes practice but can help to reduce the impact of any pains you get.

Whether you are a patient or a carer this is invaluable. We all like little luxuries every now and then and this is great for our self-esteem. You can literally treat yourself to anything. From a coffee in a café to a spa treatment or a purchase for yourself. It doesn’t have to be a big extravagance but by treating yourself to something, you are giving yourself the OK to enjoy life, and that is never a bad thing.

Not everyone will want to learn a new skill and that is ok. But for those who do being creative could be one way to do this. Whether painting, using a computer or starting a college course or learning a new skill could help you realise what you can enjoy. Try to give yourself a goal to aim for. Take things slowly. Keep busy. Take time for yourself. Or joining a group such as a writing or poetry group can also be a great way of meeting new people.

This sounds so simple, yet can be the most difficult to do. If you can open up to people in the right circumstances it can help you to feel better. You can talk to literally anyone you feel comfortable around, family, friends, doctors, people at support groups, people you know online…anyone! Talking about your fears, hopes and dreams with others is great as you get instant feedback from them and you may find they are able to advise and support you in ways you hadn’t considered.

Counsellors can be a great help as they just listen impartially. In reality, family and friends may not know what to say, but counsellors should.

For those who have ongoing health complications, hospices can be wonderful sources of support. They can also provide respite and provide emotional support for families while helping to nurse people through their illnesses. These are different in each area so it is worth discussing your local options with your doctor.

Sharing in a group capacity can help you feel less isolated in your situation and help you see there are others going through similar.

As the mitochondrial disease progresses you may feel your confidence ebbs away. But don’t let this stop you as there is support out there to help you get out and about.

Other health professionals such as speech and language therapists, physiotherapists, Occupational therapists, dieticians, and your mitochondrial specialist can all be helpful in getting you the right support.

It’s crucially important to treat yourself with kindness and know that you’ll have some better days and some that are harder – and that’s okay.

It is important to keep talking about the person you’ve lost when you feel ready, to share those precious memories you made together, perhaps on the phone with those who shared that time, or on social media. Facebook has a memories feature that can help you look at old memories. Don’t worry about what others think, people will understand that you are dealing with a life-changing circumstance. Some of the parents of our Mito warriors make cards with pictures of their loved ones with angel wings as a tribute at times they feel they should be included and remembered. This is a lovely way to remember them.

Pour your emotions into a project – yes it’s been mentioned before, but projects can be so therapeutic. Listen to music if you don’t feel ready to come to terms with the raw emotions. Put a memory box or book together.

If you feel up to it, look through photos and videos of the person, talk about them. Just go at your own pace.