Managing family activities with multiple sclerosis can be intimidating. I never want to feel like a burden to my family. I mean who wants to feel that way? I like to think I have my MS somewhat under control. Maybe I just say that to make myself feel more confident but either way I’m staying positive without being unrealistic at the same time. I dislike declining an invitation simply because I know I can’t keep up. But family activities are there for everyone to enjoy, including you even if you live with multiple sclerosis. With summer coming I know I need to change things up to better accommodate what my bod decides to do.
So what kind of family activities are we talking about? Summer concerts in the park, theme park days, pool days, summer fairs, camping, traveling; the list is endless. When you have multiple sclerosis you become professional at figuring out what your body can do and what it cant. Planning ahead is going to make these events not only more enjoyable but more accessible for someone living with MS.
Did you know that most theme parks offer programs for those with disabilities? Programs that can help avoid things like standing in line for too long? Programs that inform the staff that you have a disability and need appropriate accommodations? Believe it or not I knew about these programs but didn’t know exactly the extent that they went through to make my experience not only awesome but accessible. Organizations like “IBCCES” allow me to hold an “Accessibility Card” when I attend certain theme parks. This card protects me to avoid standing in line, gives me access to certain amenities as someone that is disabled and allows me to conserve my energy when needed. I’m not in a physical position to stand in a long line anymore unless I’m sitting down. This card allows me to travel around the park with my rollator or wheelchair and avoid long lines. I’m going to brag for a second here because I’m feeling a VIP vibe? Am I right?
When in doubt ASK! Don’t be afraid to ask a concert venue how they accommodate disabled guests. Maybe the walk from your car to the venue is long. A transportation shuttle may be something that is available to you but of course, you will never know unless you ask and advocate for your specific needs. I love me a nice pool day but I often sneak into the attached clubhouse that has central air conditioning because you know I’m going to look like a dying ficus after being in 85 degree weather for over 10 minutes. Many public events like fairs or sporting events also have electric scooters for rent. So don’t be afraid to reserve yours. You know I’ll be the first one rolling my way around a swap meet because I’d rather have more energy to shop than to walk. (They see me rollin…)
Set out time to prioritize what’s most important to you. Decide how exactly you want to spend your time and energy. If you are planning a full family day outing on a Sunday, you’re most likely better off relaxing all day Saturday to fuel up and conserve your energy. Remember, it is okay to master the word “no”. You don’t need to agree to everything and attend everything. Pace yourself and don’t be a hero! The only person paying the “ms tax” at the end of the day is you. So set realistic expectations and if things go south, it’s okay to back out last minute. Let your body guide you and listen to its cues. You don’t have to dread family activities this summer. You just need a better, more strategic game plan!