5 top tips for living well with MS
People are always talking about “living well” with MS, but what does that really mean and how do you do it?
We think living well with MS means doing what you need to in order to look after your health, but at the same time still being able to enjoy the things you love doing (even if they sometimes need to be done a little differently). The more scientific term for this, which you may hear your doctor using, is Quality of Life. WHO defines Quality of Life as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns.” Sounds a bit complicated doesn’t it, but essentially a good Quality of Life means a person’s lifestyle meets their expectations – they are happy with the way they can live.
There are lots of different tips, tricks and methods for improving Quality of Life and for living well with MS, and they will differ person to person depending on individual symptoms, life goals and priorities. There are however some more general techniques that everyone can try and we’ve put together our five:
- Listen to your body – it’s important to pay attention to your body and what it’s telling you. If symptoms like fatigue or pain are affecting you more than usual, this could be your body’s way of showing you that you need to slow things down and take a break. It’s also a good idea to keep an eye on your symptoms and to be mindful of any changes you are seeing. Understanding what’s going on in your body could help you recognize how your disease is developing, and if you are moving into the progressive form of the disease. This will in turn help you to adapt your disease management accordingly.
- Take control of your care – speaking of disease management, when it comes to your care, you should have a say. Figure out what QoL and living well means to you and use this to understand what you want your disease management to help you achieve. Is it to be able to stay awake to read your child a bedtime story? Is it to be able to restart your favorite hobby, like gardening or cycling? Once you’ve figured out what it is you want to accomplish, work with your doctor to figure out an action plan – and don’t be scared to be assertive! It’s your disease and your Quality of Life after all.
- Don’t be afraid to ask for help – sometimes, MS can feel like something you have to deal with on your own. You might worry about burdening others or not want to make a fuss. But having a support network is really important for anyone with MS and in reality, friends and family are there to help you! If you’re still worried about the impact your disease has on them, try to grow your support network so that the “burden” is spread between more people – the more the merrier! You may also want to get in touch with a local support group made up of others affected by MS. They can help support you in everyday life too and may also be able to provide additional support with things like applying for disability benefits, which can sometimes be a confusing process.
- Prepare, prepare, prepare – it can be reassuring to know that there is a plan in place. It might be a good idea to make “contingency plans” for your MS – a kind of insurance against the unpredictability of MS. This could mean things like getting a hospital bag packed and ready just in case you have to go into hospital at the last minute or preparing for events well in advance. It might also be a good idea to make plans for the possibility of symptoms progressing. Not everyone will develop secondary progressive MS (SPMS); approximately 50% of people with RRMS will transition to SPMS after 19 years. But it can be comforting to have a plan in place in case you do. This could involve having the “SPMS Talk” with your doctor and deciding what the plan of action would be if you start to notice progressive symptoms. The plan could also include how you would adapt your home environment or make changes to your lifestyle if you started to progress. Being prepared for the different eventualities can take a weight off your mind and improve your wellbeing.
- Find tech that helps you – new technology is everywhere and while some if it may not be very useful for life with MS (the new emotion sniffing camera created for dogs comes to mind) a lot of it can be! Voice command for example can be used to dictate texts when you’re experiencing vision problems. Recording devices or phone apps can be used to record doctor’s appointments. There’s telemedicine, where you speak to your doctor over video call, online symptom trackers, wellness tracking apps… so much is possible. Try different tech hacks and see what works for you.
Living well with MS doesn’t have to be difficult. Take some time to figure out what’s important to you, talk to your doctor and then introduce small lifestyle changes that help you to feel good and enjoy life.