Living with multiple sclerosis: a practical guide for families and loved ones
What life with MS really looks like
Living with MS can look very different from one person to another and can be highly unpredictable.
MS, or multiple sclerosis, is a condition that affects the brain and spinal cord, and cannot be cured. Treatments can help manage the condition, and some days may feel more manageable than others, while others can bring fatigue, pain, mobility challenges, or cognitive “brain fog.” MS can affect work, relationships, confidence, and emotional wellbeing, often in ways that are invisible to others. Many people learn to adapt by pacing themselves, making changes at home, relying on support networks, and working closely with healthcare professionals or a carer. Although life with MS can be unpredictable, many people continue to work, travel, raise families, and enjoy meaningful routines while finding new ways to care for both their physical and mental health. For support and information, organisations like MS Society UK and MS Trust offer practical advice and guidance.
The early days after an MS diagnosis
The MS Society states that being newly or recently diagnosed with MS can feel overwhelming. However, the first thing to remember is that there is a whole community of people that are around to help. Some good questions to ask when you have recently been diagnosed with MS include:
Movement, mobility and balance
MS can affect strength, coordination, and balance, making movement more challenging over time. Staying active with regular stretching, physiotherapy, or low-impact exercise can help maintain mobility and reduce stiffness. Using mobility aids or making simple home adaptations can also improve confidence and safety.
Bladder, bowel and continence changes
Changes to bladder and bowel function are common with MS and can sometimes feel difficult to talk about. Symptoms may include urgency, constipation, or difficulty emptying the bladder fully. Drinking enough water, eating a balanced diet, and seeking advice from healthcare professionals can help manage these changes effectively.
Cognitive changes and mental health
MS can sometimes affect memory, concentration, and processing information, often described as “brain fog.” Living with a long-term condition can also impact emotional wellbeing, leading to stress, anxiety, or low mood. Keeping routines, using reminders, staying socially connected, and seeking support when needed can make a positive difference.
Fatigue and how to manage it
Fatigue is one of the most common symptoms of MS and can affect both physical and mental energy. Planning activities, pacing yourself, and taking regular breaks can help conserve energy throughout the day. Good sleep habits, gentle exercise, and keeping cool may also help reduce fatigue levels.
Making the home MS-friendly
Here are some ways you can adapt your home to be more MS-friendly:
Looking after yourself as a family carer
Helping Hands are here for you if you feel overwhelmed and need someone to step in and take the reins for a while.
Caring for a family member or partner living with MS can be both rewarding and demanding. You may spend much of your time helping them manage daily routines, mobility challenges, fatigue, or changing symptoms so they can continue living as independently as possible. But while supporting someone else, it’s equally important to look after your own wellbeing too. Whether you need time to rest, recover from illness, attend to personal commitments, or simply take a short break, our respite care can provide valuable temporary support at home. Our carers can step in to take the reins when you and your family need it most and offer reassurance that your loved one with MS. You can also find financial and practical support available for carers through GOV carer support.
The types and progression of MS
Relapsing remitting
You have flare-ups of symptoms where they get worse (relapse) and then go away or get better (remission). Symptoms can vary between relapses, with some people recovering fully while others may notice lasting changes over time. This type often develops into secondary progressive MS.
Secondary progressive
Your symptoms are there all the time, and get slowly worse. Progression can happen gradually, with mobility, fatigue, or other symptoms becoming more noticeable over time. This type of MS can come after relapsing remitting MS.
Primary progressive
Your symptoms slowly get worse over time. You do not have periods when they go away or get better (remission). Symptoms often develop gradually, with changes becoming more noticeable over the years. This is less common than the other types of MS.
Medication and disease-modifying treatments
Some of the common treatments for MS include:
Relapses, flare-ups and what to do
A relapse or flare-up in MS is when new symptoms appear, or existing symptoms suddenly become worse for more than 24 hours.
Relapses can affect everyone differently, but common symptoms include increased fatigue, weakness, numbness, vision problems, balance difficulties, or trouble concentrating. Some flare-ups may be mild and manageable at home, while others can temporarily make everyday activities much harder. It’s important to rest, avoid overheating where possible, and speak to your MS nurse or doctor if symptoms become severe or concerning. During more difficult periods, our expert disability care at home can also provide extra support with daily routines, mobility, meals, or personal care, helping you stay safe and comfortable in the home you love while you recover from a flare-up.
When to consider professional care at home
At Helping Hands, we take pride in our ability to adapt to your needs. We can offer expert home care on a live-in, visiting or respite basis.
Visiting care
Live-in care
A fully regulated home care provider
Here at Helping Hands, our service is regulated by the Care Quality Commission (CQC) and the Care Inspectorate Wales (CIW)
This means we need to consistently meet high standards and are monitored by our regulators.
