spina bifida

5 Tips for living well with spina bifida

Taking care of your health, connecting with others and participating in your community is important for everyone, but if you live with spina bifida, these things can be even more crucial. 

Many adults living with spina bifida lead a happy, productive and fulfilling life. Having the right support in place and developing good habits can make a big difference. 

Whatever your goals are, taking care of your health and wellbeing are the first steps to getting there. Don’t be afraid to ask for help along the way if you need it.

Here are 5 tips for living well with spina bifida.

1. Making your health a priority

Your physical and mental health should be top priority. When you look after your body and mind, you’re better able to engage meaningfully with your loved ones, at work and in the community.

Making routines around health and wellbeing can make it easier to stay on top of important tasks. For example, developing an exercise routine or weekly meal plan can help you stick to your fitness and health goals.

If you use a wheelchair or a walking aid, it’s important to make sure your equipment is well maintained, properly fitted and suitable for your needs. Not only can this make mobility easier day to day, it can also help prevent injury.

As we get older, our health and abilities can change. It’s important to keep checking in with your health team about how things are going and adjusting your routines as appropriate.

Don’t forget about your mental health too. Just like you can eat a healthy diet and stay active to protect your physical health, there are things you can do to improve your mental wellbeing too. 

Mindfulness practises, connecting with others and learning new things are all great examples. Try to incorporate these in your daily routine.

2. Carving out time for fitness

Staying active is important for everyone, but for people living with spina bifida, physical activity is especially crucial.

Everyone’s limits and capabilities are different. You should talk with a health professional about how much and what types of physical activity are right for you.

Incorporating physical activity into your routine can help build your muscles, improve coordination and balance and increase flexibility. Exercise can also have a positive effect on your mood and mental wellbeing too.

In general, getting a combination of moderate and vigorous exercises is best. Moderate exercises include things like swimming or pushing a wheelchair independently. Vigorous exercises include competitive sports and other activities that get your heart and lungs pumping.

Since exercise is something that is crucial for health and wellbeing, it’s a good idea to choose activities that are fun for you. Exercising with others can also help make it a more enjoyable experience.

3. Working and volunteering

Working can be highly beneficial for people living with disability, including spina bifida. Not only does work improve financial well being and help you become more independent, it can also give you a sense of purpose and drive.

It’s important to find work where you feel supported and able to use your skills and strengths. Articles about spina bifida jobs are a good place to get inspiration. Speaking with an employment consultant may also help you discover opportunities and career pathways you may not have considered before.

If you need support looking for work, you could be eligible for Disability Employment Services. Participants can get support for things like finding suitable job opportunities, writing resumes, accessing further training, preparing for interviews and accessing workplace accommodations. 

Workplace adjustments such as ergonomic equipment and speech to text software could make certain jobs and workplaces more accessible. Your employer may be eligible for funding to make changes at work so you can do your job well.

4. Connecting with others

Connecting with others in a meaningful way is crucial for everyone. It’s also one of the best ways to improve your mental wellbeing. 

Relationships take work, but investing time and energy into your relationships is important for both the short and long term. Building a strong network can help you get through the tough times and give you a sense of belonging.

Different relationships offer different things to your life, so try to keep a range of relationships such as family members, friends for work, friends from school, friends from hobbies etc.

Support groups can also be a great way to meet others who are going through a similar experience to you. Knowing others understand your situation can help you feel supported and heard. Helping others can also be a mood booster.

5. Keeping your brain sharp

Experiencing difficulties with memory, concentration and putting your thoughts into words can make it challenging in social settings and the workplace. 

The good news is there are many effective strategies you can adopt to help you overcome the challenges and emphasise your strengths. Many of these strategies take time to practice and develop, however this process is good exercise for your brain.

Some strategies involve changing the environment to sidestep an issue. For example, if you struggle with remembering things, try placing a notepad next to the phone or using a large noticeboard for planning out your week. Assistive technologies, such as recording devices, alarms and electronic organisers, can also help.

Other strategies involve using your strengths to compensate for things you find difficult. For example, if you have trouble with visual perception, try using the sense of touch to locate items in your fridge or office drawer. 

Define wellbeing for yourself

While physical and mental health is important for everyone, it’s important to remember that there are different ways to think about wellbeing and success. When you take time to define these terms for yourself, you can better understand what you’re striving towards and take the small, everyday steps to get there.

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