Below you'll find our top tips and considerations for how to live well with myasthenia.

Eat Well, Rest Well

A well-balanced diet and plenty of rest can really help. When it comes to myasthenia, the more you rest the more you can do. You may find relaxation techniques such as mindfulness and meditation can be useful as well as gentle exercise such as Tai Chi.

Exercise

When your myasthenia is not well controlled, exertion weakens muscles. Therefore, people should exercise within limits that don't exceed their present capability. As you myasthenia becomes more controlled, you are encouraged to exercise as much as anyone else. There are examples of professional athletes who have been able to return to their former level of performance after diagnosis.

Pace Yourself

Many people learn to pace themselves and make choices on which are the important things for them to do and which are not. Plan for regular rest and spread activities throughout the day. It's better to take small steps to manage and mitigate the symptoms and improve your quality of life than it is to look for quick solutions. You can read more about pacing yourself here.

Focus Activities 

Focus activities at your strongest time of the day. Make telephone calls first thing, straight after your medication kicks in. Then you know that you use your voice at its strongest.

Listen To Your Body

Don't push it too far. Learning to recognise tiredness is vital because this is when symptoms are likely to be triggered. It's hard to achieve a balance between doing something and doing too much but the stability is worth the effort.

Accept

That with myasthenia, there will be good days and bad days.

Keep An Eye On The Weather

Don't get too hot or too cold. Changes in temperature can have a noticeable effect on muscle function and extremes of temperature can exacerbate symptoms.

Keep In Touch With Other People Affected by Myasthenia

Our Facebook page, Facebook group, Twitter page and Instagram page means that no one needs to feel alone with their myasthenia. Family, friends and carers are also welcome to join our community.

Information

Knowledge is power, read up on your condition and find out everything you possibly can.

Keep a Diary

It is useful to write down any questions or new symptoms that come up between appointments for discussion with the consultant and GP. A daily record of the effects of myasthenia is also useful when applying for benefits or talking to an employer. Members of myaware can obtain a myaware diary to help with this.

A Little Help From Your Friends

Always accept helps when offered. Having somebody to lighten the load and taking the opportunity for a rest in invaluable. 

Carry a myaware Patient Passport

We provide a personalised Patient Passport for you to carry and show to medical professionals, who may not be experts in myasthenia. This helps to explain your condition. It is also very useful to show paramedics should you need emergency treatment. We also have a pocket-sized card available on request. To receive a Patient Passport, you need to become a member of myaware. You can join myaware for free here.

Stay Positive

A bright outlook can really help people with myasthenia, if you're struggling or your myasthenia is getting you down, please contact myaware at [email protected] for more information about emotional support.

Stress

Stress can worsen myasthenia, so try an avoid excess emotional or physical stress. If you need to talk to someone please contact [email protected]

Swallowing

If you struggle with swallowing, eat soft foods wherever possible. View our soft food recipes for ideas.

Home Adaptations

Consider adapting your home to make life a little bit easier for yourself. Our benefits and welfare officer can advise on options for financial help with this 

Remember...

Having supportive, understanding and patient people in your life can really help.

Try to keep calm, you're not alone. 

A Spanish translated version is available here. This has been kindly translated by Carlos Blanch, the founder and former president of the Asociación Miastenia Perú.

Drugs To Avoid