Your family and friends can be a great support for you; they can help you when you’re feeling unwell or anxious. They can be a great distraction but they can also help you with some of your day-to-day tasks, making your life a little easier and stress-free. But, explaining and talking about your MS is a personal and sometimes difficult conversation to have, especially with close family and friends. Here we’ll take a look at how you can make the most of those around you.
- Making the most of family life
Multiple sclerosis doesn’t need to get in the way of spending time with your family and friends. While your condition may mean some lifestyle changes and a new treatment plan, it doesn’t have to change the quality or quantity of time you spend with your loved ones. Try to focus on you and your family first, rather than on your MS. Here are a few ideas to get you started:
- Sport is a great way to spend time with your family and to stay healthy, but you might find that you need to change the kind of exercise you do, maybe try things like going for a walk, swimming, or even kite flying. Sometimes if you’re feeling unwell, you could watch a sporting event instead of playing it, or exercise using games consoles, there are lots of options
- Too tired to travel to a social lunch? Ask friends and family to each bring a dish around to your place instead or ask them to come and pick you up and you can bring one along instead
- If you like the outdoors, you could turn jogging into a brisk walk, sign up for an allotment or plant a vegetable plot
- Cinema trip too much hassle? Host a DVD or book club night instead
- Kids love a range of activities, so don’t forget you can mix in more active pursuits with less tiring ideas, like magic tricks, computer games, jigsaws, board games, craft, cooking, puzzles and word searches
If you used to do more of these activities but now find them difficult because of your MS, it’s important to let your doctor or your MS nurse know. It can be helpful to keep a note of anything you would like to do, this can help you’re doctor or MS nurse to understand how you’re doing.
Many people living with MS feel like it changes the dynamic of their close relationships, which can be distressing.
“During my first major relapse I was off work as a result and it made me feel angry that I couldn’t do anything for myself. I was ashamed and embarrassed that my partner had to help me just to get into the bathroom and dress me” – Hannah – Living with MS
People can feel that their roles within their relationship have changed. As Hannah describes above, people living with MS sometimes have to adjust to relying on their partner for help with tasks such as getting washed and dressed. People can feel that they have lost their independence or that they are being a burden, but for their partner there is a sudden new sense of responsibility that they have to adapt to.
Adjusting to being a caregiver
Floris talks about his role as a caregiver to his wife who lives with MS. He talks about how he is constantly thinking about MS, how he feels responsible for her wellbeing, to check how she is feeling and that she remembers to take her treatment. He has found himself in a situation where his wife is able to live her life and not think about her MS all the time but he feels he needs to be in control of her MS. Floris talks more about how he has adjusted to his new role in his blog, which can be found here.
Friends and family members can be invaluable resources, offering support in a wide range of areas, including providing a set of ears when you need to talk, accompanying you to your doctor or MS nurse visits, helping with transport, or simply helping with treatment reminders.
It’s always good to know you can ask for help if you need it – and that you have people around you willing to help. Often, family members and friends want to help but they aren’t sure how to go about it – perhaps they’re worried about offending you or maybe they simply don’t know what kind of support you need. So it’s quite important for you to be specific about what you do and don’t need help with, so that you make the most of that support.
Consider what you need doing and who in your circle might be best suited to that role – it will make their job of helping you so much easier if it’s something they are comfortable doing. For instance, think about who would be best suited to picking the kids up from school for you, or doing a regular shop or some gardening for you. Certainly, you can be rest assured that it’s highly unlikely they will resent being asked to help.
- From the MS community
Talk to someone who knows what you’re going through
“Making friends with other people with multiple sclerosis, and drawing on their ideas and experiences, can be inspirational. Talking to others who are in a similar situation can also serve to remind you that you’re not alone and that there are others out there who you can share your journey with. Just remember though, everyone’s experience of MS is different. The condition, and the available treatments for it, affect people differently, so try not to worry or stress over a side effect or relapse experienced by a friend – just because it’s happened to them doesn’t necessarily mean it will happen to you, too!” – Clare – Living with MS.
Dating, meeting friends and “making the most of the good times”
In a short interview, Charlotte proves that multiple sclerosis doesn’t have to stop you from having a busy social life and maintaining relationships with others. Here, she talks about some of the ways she manages her MS around going on dates and catching up with friends and family. Read more.
Raising a family with MS
Raising a family is difficult for anyone but it can be extra challenging for those living with MS. Claire, who lives with multiple sclerosis, talks about some of the difficulties she has experienced raising her two children with the condition. Read more.
Fatherhood and MS
For Kaz, one of his greatest achievements was getting married and having a child. Although it comes with its own set of challenges, he talks about the hugely positive impact it has on his life with multiple sclerosis. Read more.
- Useful links