Being diagnosed with multiple sclerosis (MS) is a life-altering moment. For some people, it becomes the impetus to make positive changes to improve one’s quality of life. For others, adaptations and modifications to daily life are more necessities than niceties. Even small changes can make a big difference in how you navigate life with MS.
A good place to start in creating an environment in which you can thrive with MS — not just survive — is to start at home. Here are some suggestions and strategies to build a space that is good for you physically, emotionally, and socially.
Adapt your home as needed
A diagnosis of MS doesn’t mean that you immediately need to remodel your home, but there are some universal design and organizational features that can make a difference.
- Convenient lighting and handrails. Make sure that your home entrance, stairwells, and hallways are clearly lit. I appreciate motion-activated lighting that reduces the need to reach for a light switch when my hands may be occupied. Make sure that all stairwells are equipped with handrails on both sides that extend beyond the stairs for safety and convenience. Handrails at exterior steps are recommended, as well.
- Space at entry doors and interior corridors. If you need to use a wheelchair, there should be a minimum of 5 feet by 5 feet clear space on both sides of an entry door for maneuverability. Interior doors that are 36 inches wide will allow easier transport throughout the house as will walkways that are a minimum of 42 inches wide. Keeping clutter and decor off of the floors is always a good idea.
- Mind the floor. Replace thick carpets or rugs with low pile versions that are secured to the floor. Avoid highly polished or glossy surfaces which can become slippery when wet. Use color to contrast between surfaces and trim to make it easier to visualize the edges of floor surfaces and walls, counter tops and front edges of cabinets, or risers on stairs.
- Safety proof the bathroom. Grab bars and rubber mats in the shower are simple items that can reduce the risk of slipping while bathing. Shower chairs are helpful for those with impaired balance or the inability to stand for long periods of time. A nonslip bath mat outside the shower or tub can be both functional and luxurious.
- Optimize the kitchen. Store frequently used items within easy reach. Replace shelves in kitchen cabinets with sliding drawers to extend your reach. Stock the pantry and freezer with healthy, easy-to-prepare foods to have on hand for days that you may be low on energy or time. Keep your knives sharp; doing so will reduce the force needed to use them and increase kitchen safety. Use a stool in the kitchen to save energy while working at the countertop or stove.
Create room to breathe physically and emotionally
In your physical environment, begin to clear the clutter and move towards a more minimalist lifestyle that will be less burdensome in its upkeep. The more belongings you have, the more there is to clean. More cleaning means more energy expenditures. More energy spent on the house means less time with your friends and family.
The emotions being stirred by MS can be oppressive and frightening. I believe strongly that it’s important to allow yourself to fully experience and express those emotions. Trying to box them up and store them in an imaginary closet is paramount to stuffing your basement with junk, only to have to deal with it later. Give yourself five minutes a day to yell, scream, cry — whatever you need to do to clear the emotional cobwebs and air out your emotional home.
Make space for downtime
When I was newly diagnosed, fatigue was a severe problem. I was discouraged in that I found myself zonked out on the couch most afternoons and would wake up frantically to get ready to teach my after-school music lessons. My boyfriend at the time gave me the best gift — a travel alarm clock — with the intention that I could set the alarm, lay down to take a planned nap, and wake up in time to be refreshed for work.
Using the alarm clock gave me room to allow myself to attend to my physical need for rest and to regain control over my afternoons. You might want to create space for meditation, yoga, or some other form of relaxation. But the point is, rather than fight the nap, schedule it in and enjoy it. Make yourself a priority.
Communicate with your support system
Maintaining friendships may become a challenge as you notice folks aren’t calling as often. People may seemingly disappear if they don’t know how to handle the challenges you are facing. Or people might be impatient and not understand your need for flexibility and spontaneity, as MS is unpredictable.
Make the effort to include your closest friends and family members in what you are going through. Don’t try to do this all on your own. Be open to talking about your needs, concerns, triumphs, and joys. Sometimes people just don’t know what to do or how they can help, so it’s up to you to let them know what you need. This is particularly important if all you need is for them to be there for you.