MS and the little things

Recently the folks at MS Connection reached out to see if Meg and I were interested in an interview for a third party – we’re always down for sharing our thoughts, and usually do a handful of interviews every year. For this one, we were asked about how MS has impacted our lives outside the physical. It’s really important to acknowledge the non-physical symptoms — the physical symptoms are often so loud that we don’t really get to uncover anything beyond pain and useless legs. We push things like depression, social withdrawal and relationship issues to the back burner…we often think of them as the ‘little’ things, but really, they’re just as big as the physical stuff.

This interview definitely prompted some thoughts and experiences I haven’t been open about yet, so I thought I’d share. Check it out below!

• I know MS symptoms vary greatly — what are your primary symptoms?

Kellen: My biggest symptom is losing the use of my legs, although pain and fatigue aren’t far behind. I can’t remember the last time I had a pain-free day. The fatigue makes it hard to do even regular daily tasks (like showering, getting dressed, etc), so I have to space those out with any appointments or outings. I’m also mostly blind in my left eye due to Optic Neuritis, which severely messes with my depth of field, and of course my balance.

Like many people with MS, the bowel and bladder problems are always on my mind too…because if they aren’t on my mind, they may end up in my pants. I’m numb from mid-torso down to my toes, so I can’t tell when I need to go to the bathroom until it’s just about too late. The numbness also makes walking really difficult, because of how much it affects my balance.

My memory is fading and my speech is slipping, although Meg notices that much more than I do these days. While I’m in a wheelchair most of the time now, the times I am up on my feet, I look like I’m 6 drinks in and then some. It’s tough to describe all the big symptoms that MS can throw my way — it’s so unpredictable. Some days I have spasms, other days tremors, and when I’m really lucky, both.

• Do you use any special equipment?

Kellen: I use an ultralight wheelchair about 75% of the time; when I do get out of it, I use my cane (and sometimes walls) to keep me upright. I also need to keep a portable urinal with me when I leave the house.

• Outside of the physical, what are some ways MS has impacted your life?

Kellen: I’d say my social life has taken a huge blow. The more my MS progresses, the harder it is to do…much of anything. My fatigue level really controls what I’m able to do, or not, so I have to be really meticulous about my schedule — I usually can’t have doctor’s appointments and a social life in the same week without consequences. There’s also the mental/emotional side of things. It’s hard to go from being a pretty social person to feeling like an outcast.

Meghann: I’d say depression has been something we’ve had to learn to identify with Kellen since his MS diagnosis. It’s hard to know when it’s just fatigue, or when he’s feeling discouraged and unmotivated; but we’ve gotten a little better at recognizing that, and we try to make sure he’s still finding the joy in life.

• How has MS impacted your relationship?

Kellen: Getting diagnosed was a turning point for our relationship. We were in our mid 20s, married 3 years, and had a 2 year old when I was diagnosed. It was hard at first — what does this even mean, right? Because of my MS, we actually grew closer and our relationship got stronger. Something like this makes you really look at what’s important to you. It hasn’t been an easy ride, but if MS allows me to spend more time with my family, I’ll take it.

Meghann: As a young couple and new parents, it definitely made us grow up a little faster than we probably otherwise would have. There’s a certain level of reality-check that his MS has made us face; about our roles in our household, about our dreams for the future, and anything and everything else. But like Kellen said, it’s also really made us figure out what’s important to us; so all-in-all, it’s been one of those silver linings that made us figure out how to be a killer team.

• What do you wish people without MS knew?

Kellen: Make more time and space for the people in your life who have MS (or any other disability or chronic illness). Just accomplishing daily tasks is a full time job when you have a progressive disease, so it really helps to have friends and family who will make a little more effort to hang out. Plus, most houses aren’t super accessible, so it’s sometimes easier for me to stay home and have friends come to me.

Meghann: Accessibility. Although we’ve come a long way in terms of accessibility in public spaces, we still have so far to go. Kellen and I didn’t realize how many things look accessible but really aren’t that easy to access, until his MS progressed to the point of requiring a wheelchair. So far we’ve learned the hard way that unmaintained sidewalks are just as inaccessible as no sidewalk at all; and that businesses that require bathroom passes can be the difference between making it to the bathroom in time…or not. We didn’t really get it until his MS forced us to face that reality.