Changes to Personal Life and Home

Yeah, so the main challenge is to get from my bedroom to my kitchen, which is just-- so my walking speed a few years ago, when they measured before my visits with the doctor, it was 25 feet a minute. So now that I don't walk and I basically crawl from my bedroom to my kitchen, it takes me, I don't know, 20 minutes to get there. So that's a major challenge.  But when I'm in the kitchen, it's OK. I have canned soups that I like to eat. I order from Safeway, and they're great. They deliver, they come as far as the kitchen. They put everything there, they bring me water. And so, I order food from Safeway.  And then I can prepare very few things. It's not that easy because pots and frying pans, they get heavy, especially after a while. And my water, if I have to carry it to turn from the sink too.  What really helps me actually is I have an induction stove and it makes a huge difference. So basically, just push with one finger and then it starts heating up. And so, induction-- and I don't even remember how I found out about it because I have never-- seen it at any of my friends or any acquaintances. Maybe I was browsing the Amazon somehow, because I know I ordered it from the Amazon.  But basically, what I'm saying is that to turn from my sink when I pour water into a little pot and put it on that induction stove, that itself is a major challenge already. But you know, it's not undo-able. It's just that everything takes so long. And time management is a major challenge for me. But I can do that.  So, I put that pot on this flat, little, small induction stove. And then I boil it, or I put soup in, canned soup there, or I can fry some things like in a frying pan. So, I can feed myself. Fortunately, it's a big, big, big portion for me, that it's the right arm that works, not the left.  

It's affected everything. So just first of all, I don't sleep well. So, it has affected my sleep. So oftentimes, when I try to get up in the morning, I'm still groggy and tired. I have trouble just getting up. So, I get up, and then trying to get my legs and things moving correctly to walk to the bathroom-- and then I have to come downstairs in the morning. So, I hold onto the railing. And I'm leaning against the wall and kind of making my way down the steps. I'm holding onto the railing for dear life to get up the steps-- in the morning. Carrying the laundry up and down stairs is another issue. And I just adapted, so I'm maybe dragging the laundry basket down behind me to get down the steps or one step at a time trying to get the laundry basket up the steps. That's if I'm doing it. I've also gotten to the point where I'll just ask my kids or my husband to take it up, obviously. But I've given myself a black eye trying to blow dry my hair. It's affected in that way. I burned myself trying to curl my hair or do my hair, because I don't have the strength to keep my arm up or hold the equipment well. So, some days I do fairly well getting makeup on, and other days I don't do as well. You just try not to poke yourself in the eye. So that's where the occupational therapist comes in. Cleaning the bathrooms-- so I ended up getting a battery powered scrubber, because it would just be exhausting for me to just clean the shower itself. So, I would have to clean part of the bathroom, and then go take a break and do something else, and then try to come back and finish cleaning. Just because it just-- I don't know. It was just exhausting. Taking a shower is exhausting. So, I try to do that at night before I go to bed. In the kitchen, I'm trying to cook and do different things. Sometimes just putting things away is difficult. I'm trying to put different pans away and so forth. Trying to hold the knife to chop vegetables or whatever, sometimes it’s difficult. So sometimes I'm trying to use different choppers and other things to help out in that respect. The dishwasher, I can't tell you how many things I've broken putting into and taking out of the dishwasher. It affects so many different things. I used to have a garden. I can't physically do the garden anymore. If that was my only thing that I did-- maybe. But I can't. Being out in the heat is exhausting, so it just got to be too much. So, I used to love yard work and taking care of things, not so much anymore. So really, it's just a lot of things every day, probably all aspects of life, are affected by it.  

So, when we built the house, we worked with an architect, and we worked with this person from accessible housing and went by all the things like in the, everything is very wide open because of it.  

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Like the hallways are wide because of having to turn a wheelchair. The kitchen needed the radius to turn a wheelchair. We did put backing in all the walls so that if we ever need handrails, there’s, the backing is already there. The one closet, in case we ever, I needed it to get to the basement, you could just cut out the floor. Everything else is there that you could put an elevator in. So, you know, yeah, basically the windows, the type of windows we got were designed so that if I had, you know, problems, it was this kind and not this kind of window.  

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The kitchen very much was designed. The only thing that wasn’t was the sink is still high because I just didn’t want a lower sink, and I just said, “If it comes to that, we’ll deal with it.”  

The thing that was, got to be very, when we met with the architect, the accessible housing person, the builder, they would always be talking about the wheelchair. And it was like, okay, you’re always pointing out that I’m going to be in a wheelchair, and I’m like, I’m not necessarily going to be in a wheelchair [LAUGHTING]. You know, somebody else might need this. It might not be me that needs the wheelchair. It may be my husband that needs the wheelchair. Just because I’m more likely, but it got kind of depressing, like to think that this was being set up because you’re the one who might be in a wheelchair. And I say to them, "You don’t know that."  

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But we did design everything with the idea. That’s why there’s no steps in the house at all, even coming in like from the garage. It’s just a ramp that’s maybe an inch incline. From one room to the next, the floors are all the same level. We have a walk-in shower that’s huge because of that, so that if you ever, if I, if anybody ever was in a wheelchair, you can just roll right into [LAUGHING] whatever. You know, you could set up whatever. So, yeah, everything was designed with that in mind.

There are no clutters on any of the places in my house. I don't have chairs and tables or too many things in the walking space, so it gives me at least a walking space, that's one. Two, I have ensured that my garage in my house does not have too much upstairs. It is just one, two stairs, and I am there in my garage. So, I don't ever to take too much upstairs there also. That's two. Three, I think I have put everything on my, everything should reach out to my hand so it's easy for me. I've tried to automate as much as possible in my house. All my lights and everything is automated. If you come down to this house, you will be sad to see my house. It is completely automated. I can see the most automated house in my neighborhood. So, all of my lights, everything is through my phone. Every one of the bulbs, even the bulbs, are there through my phone. I have tried to do it myself, and I've changed everything. It makes it easier for me. So even if I just go and tell Alexa that switch off my entire house, it'll switch off the entire house because it's all connected to each other.

I've always been a physically driven person, and I really like the outdoors, and I like to rock climb and run and be active all the time, play ultimate frisbee. And so, I wanted to immediately make sure that I could still do those things or push myself to still do those things to the best of my ability. So, in the weeks directly following my diagnosis when I was still dealing with the pain and temperature loss, the rock-climbing gym that I'm a member of at that time had just started the mile high challenge which is, over the course of that month, the goal is to climb a vertical mile in the rock-climbing gym, and you track all of your climbs. And if you climb the vertical mile in a month, you get a t-shirt. And I had been kind of halfway through the vertical mile when I was diagnosed, and then I didn't climb for like a week and a half because I was in the hospital and getting the steroid infusions. And then the first thing I did was like, I need to go finish this. I want to see if I can finish this thing. And I remember being really frustrated in the gym because I felt like my left leg wasn't doing the things that it would normally do. I couldn't trust my toe to hold me on certain foot holes on the wall, and I kept slipping off things that I felt like I wouldn't normally slip off on, but I did finish that vertical mile, and I got my t-shirt, and I wear it all the time. So that felt like a thing that was really important to me right off the bat. I started this challenge, and I don't care that I have MS now. I want to finish the challenge that I had already started.  

Or, you know, I couldn't jog for years, years and only two years ago, right before the pandemic.  I, I've been practicing walk-- because of the pandemic, we have dogs, so we, you know, we walk’em, walk’em, walk’em, and usually, I would never walk’em, that's just not my thing. Plus, I had to start going the gym because I also have osteoporosis, so all these things help. So, I got stronger. And, yeah, now I can jog, well, when I say jog, I'm saying half a block without dying, you know. But I can move my legs and, you know, I still can't jump like, I can't do what is that, the jump rope thing? I can't do it, or I can't just stand there and my two feet and say, OK, jump and I jump. I just mentally, there's no connection, my legs won't do it. Not that that's not like, huge. It's nothing. 

It has impacted my life greatly. Like I said, I was able to get through a marathon. I'm not a wonderful athlete or a major runner by any means. So that was a major accomplishment that slowly and surely has been taken away. The last marathon that I ran was probably a year after I was diagnosed and was just in absolute nerve pain from head to toe. And that's when I realized that you can throw yourself into a pseudo-exacerbation. I thought, at that point, I had switched medications. I went from the injectable to-- that was another study that I was in for a different medication. And because I felt that maybe I didn't understand the medication fully, that possibly I was having a reaction to the medication. As it turns out, it was just my body could not handle the stress that I was putting it through. And so, for a few days, I was stuck in, like I said, a pseudo-exacerbation, which my doctor yelled at me at that point. Because I was like, could it have been this? No. He's like, “You did too much. You need to realize you need to cut back. And you can't do that anymore.” So, I don't run much at all anymore. I'm thrilled if I can run a couple of miles at a time. I do wear a brace for any activities for the foot drop. And I've been through several of those.  

I am a big proponent of exercise. I think the reason I’m not in a wheelchair at this point, that I could’ve been, is because I have, I rode bike for a long time, did the racquetball, did whatever. I got to a point where I couldn’t ride bike because I wasn’t sure, when I got off, where I was going to end up. When I put that left leg down [laughing] to stop, it was crash and burn, or will I [laughing] still stand up? So, after that, I didn’t know what I was going to do because I couldn’t walk anymore at that point really for exercise. So, I went and tried a recumbent trike

INTERVIEWER: Hmm.

[INAUDIBLE] front went well. The first one, I think, was two wheels in the back, one in the front. I didn’t like it at all. And we were sitting with it on the table, my husband, my daughter, who’s my youngest child, and I, and I said, “I’m just not going to do it.  I just have to give it up.” And she said to me, “Mom, you’re not a quitter.” And I thought, you know, you’re right. I’m not a quitter.So, I went back to the bike shop, and they happened to have a recumbent trike with two wheels in the front and one in the back. So, I rode that around and I like that one. So, I got that trike, and that has become my mode of outside exercise, and I ride it a lot.  I do that, and I swim. Obviously swimming I can do year-round in an indoor pool, and the trike I can’t. But I try to swim or trike at least four times a week, and I really push trying to get out the fifth time. And I think that has made such a difference. And somewhere in all this happening, it was back when I was with the guy who went to [ORGANIZATION]. I also saw a physical therapist who dealt mainly with MS who was really amazing. And she gave me some exercises that I continue to do, and this has probably been 10, 15 years now, maybe not, yeah, somewhere in there, that I continue to do these exercises. And those have helped also.   

I think it really only comes up when heat is an issue. So, living in the super balmy [LOCATION] is perfect for me. But I remember-- even when I think about going on vacation and stuff, if I go somewhere that's going to be really hot, I need to have access to air conditioning. That's a non-negotiable. And I mean, even as a 31-year-old, that's a little bit-- I still sometimes feel like a little bit of a diva because, you know, most people my age are pretty outdoorsy and robust. Luckily, I live in a place where that doesn't matter as much. But I remember when I was living in Baltimore, like summer days, if I want to go on a bike ride with my husband, that's probably not going to happen during the daytime. I would get really out of it really quickly.  

I have to take things slower. Pre-MS Dani used to multitask like crazy. But if I were to multitask like I used to, I'd be out of energy by like 10:00, and that's not helpful for anyone. So, I do spend a lot of time planning. Because planning for 30 minutes on paper can save me.  I'm going to use the spoon theory; it could save me five spoons. Whereas, if I just fly by the seat of my pants I'm again, going to run out of fuel fast. And then what are you supposed to do? You can't do anything. Because I can't push it. I won't let myself push it.  So, a lot more organizing. And I'm not naturally the person who before would have taken out a planner and thought ahead of this and that. But apparently, you need that to be a parent. So, it's good that I now just naturally do it.

MS dictates what I'm allowed to do, not what I want to do. I make a list the night before of everything I want to do the following day to keep me focused because I can't remember anything. And I could wake up like I did Saturday, and I just felt like I'd been hit by a truck. I haven't felt that bad when I've had the flu before, and it was just MS fatigue, and just being worn out because I had pulled weeds for three days, not even all day, just a couple hours each day. But that was too much for me. So, all day Saturday I didn't get dressed. I just laid down in a recliner and watched TV and slept off and on all day. Yesterday I didn't feel good, but I pushed through, and it was OK. There are some days I can't take a shower because my balance is too bad to get in the shower. I can't wash my hair because I can't lift my arm. I can't brush my teeth because I can't hold a toothbrush.  

Everything is slower. That is the biggest. Everything is slower, and I plan a lot more, little things. Like when I say little things, I mean like before MS, I wouldn’t have thought, okay, I’m going to this part of the house, and I need to do this, or I have this here, and I have this here. Now, because we’re on all one level, the house is kind of long. I will think, okay, I’m here, take this. I’ll put this away while I’m here, do this while I’m here, so that I minimize the number of times or the amount of walking I have to do, because it’s, I don’t even know if it’s because it’s hard or just because it’s so slow. I notice at work, I do the same thing. I don’t get up and put something away. I just kind of like shove all the stuff that I’m going to need to do, and on one trip, I go to this room to do this, this room to do this, file in the office, whatever. So, it’s more like the really, really little things that I have in my mind. In a way, it’s become, it makes you more efficient, I guess. Doesn’t make you faster, just more efficient. So, I think that is a huge change. I always take a book or my Kindle with me wherever I go, especially like if I go with my husband, because if we’re running errands, he’ll be the one doing it, and I hate to sit doing nothing, so I always take something to read. So that has changed that also.