Living Well with Multiple Sclerosis: Practical Support for the Day You're Having

If you're living with multiple sclerosis (MS), or you love someone who is, you already know the most important thing about it: no two days are the same. Some days you'll walk the dog, get through a full day of work and cook dinner. Other days, the distance from the bedroom to the kitchen can feel like a marathon effort.

Thousands of New Zealanders are living with MS, and New Zealand has one of the higher rates of MS in the world. Yet most of the advice out there is written about the diagnosis, not about the person. This guide is different. It's about the practical, everyday things that might help you to keep doing what you love: by managing your energy, setting up your home to work better with you, and choosing equipment that matches the day you're actually having.

MS looks different for everyone, and that's the point

MS affects the way messages travel between the brain and the body, which is why it shows up so differently from person to person, and from day to day. Fatigue, balance, vision, strength, and sensitivity to heat can all fluctuate. For many people, symptoms can come and go in waves.

That variability can be the single most useful thing to plan around. The goal isn't to find one perfect solution. It's to build a flexible toolkit, so you can have the right support for a good day, a hard day, and everything in between. People who might live well with MS tend to plan for the day they're having, not the diagnosis that they were given.

Protect your energy for the things that matter

Fatigue is reportedly one of the most common parts of MS, and it's not ordinary tiredness. For many people, a rest just doesn't always fix it, so the smarter approach is to spend your energy deliberately, much like you would with a budget.

• Do the things that matter most to you first, when your energy is at its best. For most people that's in the morning.

• Break bigger tasks into smaller pieces with rests in between, and let 'done enough' be good enough on those harder days.

• Sit down for tasks where you can: showering, food prep, ironing. Using a shower stool or a kitchen perching stool can save a surprising amount of energy.

• Watch the heat. Many people with MS find warm rooms, hot showers and summer afternoons make symptoms temporarily worse. Plan outings for cooler parts of the day, and maybe keep a fan or a cooling cloth handy.

None of this is giving anything up. It's the opposite: spending less energy on the boring parts of the day so that there's more left in your tank for the good parts.

Set your home up to work with you

Small changes at home can make a big difference on your days when balance and energy are low, and often cost far less than people expect.

• Clear wide, predictable walkways through the rooms you use most, and tape down or remove loose rugs and cords.

• Put a firm, high seat chair with armrests in rooms where you spend the most time. Getting up from a low, soft couch can burn energy that maybe you don't need to spend. An electric lift chair takes this further and does the standing work for you.

• Think about your bedroom as a recovery space. An adjustable bed lets you change position more easily, possibly can help with circulation and temperature, and makes getting in and out much easier for many people.

• Add grab rails where you naturally reach for support: beside the toilet, in the shower, at steps and entry doorways.

• Keep everyday items between hip and shoulder height so you're not bending or reaching overhead unnecessarily.

A Community Occupational Therapist can walk through your home with you and recommend exactly what will help. More on how to find one below.

The right equipment for the day you're having

Because MS fluctuates, mobility equipment isn't an either/or decision. Many people may use a walking stick on one day, a walker on another, and a mobility scooter for longer outings. Having equipment support options is what keeps you more independent.

A walking stick or walker can help with balance or give you somewhere to rest on shorter trips. Many walkers include a seat and a basket, which turns a hard walk into an easy one.

A travel or foldable mobility scooter is often the game changer for MS. Models like the GoGo Carbon, TravelScoot Escape, Atto Classic and Atto Sport fold into a car boot, the mall or a family event and know the distances at the other end are covered. You're not using it because you can't walk. You're using it so you can arrive with the energy needed for you to enjoy yourself more.

For everyday use around the neighbourhood, you can try a mid-size scooter such as the Pathrider ES10, Pathrider 10 2.0 or Pegasus Metro, which gives you more range of distance and comfort for those daily errands.

Two things worth knowing before you buy. First, the selected scooter models can be hired on a weekly basis, which is a low-pressure way to find out what works for you before committing. Second, pre-loved scooters are a genuinely good option: every pre-loved model we sell has been serviced, tested and signed off by our Repairs team, so you get the same trusted brands for less.

Every new mobility scooter from Independent Living also includes 12 months complimentary AA mobility cover, with the option to extend to 36 months for $39.

You don't have to figure this out alone

There is more support available in New Zealand than most people realise, and the earlier you tap into it, then hopefully the easier doing daily things gets.

• Your GP and neurologist are the starting point for managing MS itself, and they can refer you other services that you might be eligible for.

• An occupational therapist can assess your home and daily routines and recommend equipment. In many cases they can also help to apply for equipment funding through either Accessable or Enable New Zealand depending on where you live.

• MS New Zealand and your regional MS society offer information, community support and field workers who understand what issues you're navigating.

• The Total Mobility scheme provides subsidised mobility transport for disabled people in most regions, which helps you on the days when driving just isn't an option.

If you're not sure where to start, ask. Our team talks to occupational therapists, funders and families every day, and we're happy to point you in the right direction, even if the answer isn't something we sell.

Try it in person, with no pressure

Equipment that looks right online can feel completely different in person, especially when grip strength, balance and fatigue vary day to day. That's why we'll always suggest you try before you decide.

You can visit us at any of our three Auckland showrooms, in Browns Bay, Royal Oak and Botany, and take your time trying a wide range of scooters, lift chairs, beds and daily living aids. If getting to a showroom is hard, our mobile service brings equipment to your home across Auckland, Bay of Plenty, Waikato and the Coromandel. And wherever you are in New Zealand, we ship nationwide, with free delivery across Auckland metro.

Independent Living has been helping New Zealanders live well for more than 43 years. As a charitable trust, our advice is honest and our focus is you: no pressure, no upsell, just the right solution for the day you're having.

Call us on 0800 625 100, visit ilsnz.org, or drop into a showroom. We'd love to help.