The trouble with having a disease like MS is that nobody can tell you how your particular MS will behave. Will you be one of the adventure hikers you see in all the pharmaceutical advertising? Or will you be the woman who goes from diagnosis to disability in what feels like a millisecond? Do you have PPMS or RRMS or SPMS or treatment refractory MS or tumescent MS or…I’m sure there are more official versions of MS but you get where I’m going here.

Even within these basic categories the range of disease presentation is mind boggling. It can be hard to find another MS experience to relate to, or connect with, mostly because so few of us are alike in any way. I started writing this blog because I couldn’t find anyone like me out there; any 50-something, single, independent working woman who has happily lived alone for the last 20+ years (give or take the occasional boyfriend) who went from some funny feelings in her legs to rollating all over the damn place in what felt like record time. Just kidding. You know damn well that I mostly rollate around my house, but whatever.I never had these time periods of “remission” I kept hearing about. I had relapses, sure, but I never got back to pre-relapse functionality. I was in what felt like one giant relapse from diagnosis in 2015 to this very day. I’ve been on a fairly mind-blowing downhill slalom from my day of diagnosis.

The thing that strikes me about how fast my disease has progressed is that I am hit almost daily with reminders of the things I can no longer do for myself. I’ve had 3 MS-versaries so far, looking down my fourth on December 1 of this year, and I can vividly remember that changes that happened from year-to-year.

In the first year, I continued to do most things myself but occasionally had to ask for help. When I go back to old posts and read about how I did all of the things; the laundry, the sheet changing, the working and the traveling, I did all of those things myself. It sucked to do all the things myself but I could, so I did. I was pretty dedicated to my independence. I was a helper, not a help-ee. I could do this. I could probably do anything if I tried hard enough, I told myself. It was hard, but it would be OK.

But things were happening that I couldn’t control and they were happening fast. Leading to my list of “things I cannot do myself” getting longer and longer

There was the November when I attempted to rake my own leaves. Sounded easy enough! Raking leaves is not difficult. Until it is. I had started to actually ask for help around the end of 2016. I told myself that I was asking for help because I had to be wiser about how I used my spoons. I had recently discovered the Spoon Theory and it helped me understand what I had such a hard time describing to others about my MS-related energy challenges. How hard easy things were becoming for me. I told myself that asking for help was just a thing I did to help make my life a little easier. I didn’t really need that much help! Asking for a little help every now and then was ok by me. Sort of. And people seemed to really enjoy helping me and I was surrounded by people willing to jump in and save me a spoon or two. I was (and am) extremely fortunate when it comes to support and helpers.

But every year when I would look back at what I did at the same time the year before, it would strike me hard how tangible, how clearly defined my losses were. I had to accept that I couldn’t rake the leaves in the fall. I needed more help than ever when it came to planting flowers in the spring or sprucing up the front porch for the nice weather. One year I just needed help with the heavy stuff, I used my wagon and walked slowly from my garage to my front porch, and I looked at my accomplishment at the end of the particular chore and think, “Jesus that was hard. But I did it.”

This year, my 79-year-old mom and my 17-year-old nephew actually painted my front porch. Once that was done another nephew had to come and help me with the pillows and hanging the wind chimes and the spring chair cushions and stuff. It took three people to do what I used to easily do myself. I should be helping my mother with HER chores and not the other way around. But there you have it. Life is funny that way.

In the early years I used to be extremely frustrated with how small my new world felt.

I’d get up in the morning and get myself to work, do my time in the office and get myself home, do my kitty chores and after all of that I’d pretty much be on the couch because my legs were just so tired. I used to complain about not going out socially more often. My life was just sleep, work, chores, sleep again. On repeat. It frustrated the crap out of me but I accepted that a smaller life was kind of OK with me. I found time to be social every now and then. To be honest, my life changes were as much about my age (not in a bad way!) as they were about having MS. I just didn’t care to be out seeing and being seen anymore. I felt more like nesting. Being comfortable at home, alone for much of my life, but happy and peaceful with the life I created for myself. I was tired of trying so damn hard to be so damn fabulous every minute of every day. Independence suited me. I felt happy.

Now that I’ve spent the last 5 months spending most of it inside my own home, my world is starting to feel even smaller.

At first I felt claustrophobic just being in the house only able to move from room to room, very slowly and very carefully, climbing the stairs a thousand times a day to pee but doing it because I had to. Then my occupational therapist convinced me to outfit my second floor so that on really bad days, I could just stay up there and avoid steps all together. I now have an office set up in my guest room. A giant television in my bedroom allows me to watch TV from my bed (I’m still horrified by it). Every conceivable support pillow/foam comfort device I could get delivered to my porch courtesy of Amazon helped me be a little less uncomfortable in bed. I still never feel totally comfortable watching TV from bed and it galls me. But I do it because I have to.

Bu then I started to feel like I was getting stronger. I could make it downstairs and handle my chores myself (involving many steps). I worked from my living room and a few times in the actual office. When I was home, I could sit on my lovely clean porch. I wasn’t walking all that great but I was almost managing to leave the house for a few hours a few days per week and that felt like winning. Admittedly, my standards are pretty low.

Thanks to the UTI I recently contracted, my days on the first floor have been limited. If my whole house used to feel claustrophobic, being confined to my second floor is driving me a little mad. I mean, it’s spring so I can open windows and hear birds and kids playing and the sounds of the outside world and that sometimes helps. Other times it makes me feel even more isolated.

Some evenings I’m on the second floor early in the evening, much earlier than I’d ever go to bed. It happens on the days that I’ve hit a wall. I don’t have any more steps in me. Second-floor life is necessary on those days. Sometimes while I’m struggling to get into bed desperate to just be in a comfortable TV watching position, trying and failing, I just lay there, half on the bed, half off the bed and I just yell, “FUCK” really loudly. I’m sure those kids playing happily on the sidewalk in front of my house must really get an earful of the crazy crippled lady screaming bad words into the atmosphere but it just has to get out. My frustration levels are off the charts. If my life is a set of Russian nesting dolls, I’m finding myself down to one of the smallest of dolls, scared to death of how I will feel when my sense of myself and my place in this world actually gets smaller still. When does it stop getting smaller? Who the hell am I if I’m not that independent woman with the world at her fingertips? How do I reconcile this broken-down body with the healthy, able fiercely independent person my broken brain still thinks I am?

Sometimes I think it’s really just a matter of mind over matter. If I think I can, I will.

Except for that is complete bullshit. When I think I can and I try, bad things usually happen. Once those bad things start happening I usually need to call for help and POOF. My sense of myself and who I am goes out the window before I even know what’s happening and I feel lost again like some kind of imposter in my formerly fabulous independent life. I can’t even revel in my solitude anymore! Mostly because I’m usually in pain and it’s super hard to get comfortable in virtually any room in my house. Maybe because the rooms are all in my house and by nature of my affliction, I’m confined to this house more than I ever thought I would be; therefore, I feel suffocated in the place where I used to always feel safe and content.

[This is where Cheryl my therapist’s voice enters my brain and adds the words “for now…” after that last sentence. I want to share her optimism really badly. I’m just too much of a realist to let that happen, I guess.]

When independence is such as critical part of my sense of who I am, it becomes really hard to feel comfortable in my own skin, in my own happy place, in the sanctuary I created for myself when my life was turned upside down when my husband died when we were both 30. This house became the very first place where I lived alone. This big old house gave me a place to retreat when the craziness of my newly single life got to be a bit much. Believe me. My newly single life was pretty much always a bit much. I needed a safe place and I had created the perfect home for me. I was safe there. I was happy.

I’ve been asked more than one time why the hell I’m not selling my house now that it is making every moment of every day quite difficult. If I simply sold my house I would instantly and make life easier for myself, the logic goes. Here’s the thing. Any time the idea floats through my brain, usually while crawling up the steps on my hands and knees or sometimes when I’m cursing my discomfort while attempting to watch TV in bed, I get an instant pit in my stomach. I’ve thought about it a lot, really. The neighborhood where I live has been blowing up lately when it comes to real estate. I’ve had people knock on my door asking me if I would be willing to sell my house. I would make a lot of money If only I could sell this damn house. Things would be instantly easier. Or would they? See, the idea of moving from this house and into some other one-floor living situation sounds so obvious and necessary when you look at it from almost every perspective except for the one that considers my own happiness. I’m not ready to leave this house. I know this as well as I know any true thing.

I made myself a haven where I was consoled after too many bad relationship decisions to count. A place to long for while traveling on business. A physical monument to my independent, happy life. I’m not willing to give it up. I’m just not. You can explain to me patiently how much better my life would be after doing this one simple thing and I still won’t be ready to give it up. I will know when that time has come and now is not that time. Cheryl and I talk about it often. She agrees that now is not the time. Nobody knows me better than my therapist. Nobody. This house is the embodiment of my independence and I’m not willing to walk away from that.

You are probably thinking, “But BBAD, don’t you see? Living in a one-floor dwelling without all of the old house maintenance, without all the damn steps, would allow you to feel more independent, not less, because you’d would be able to do so much more yourself.” You might be right but that’s not the only kind of independence. I’m talking about the kind where you know in your very soul that you can rely on you. How I get things done, who I ask for help, how often I have to retire to my second floor just to stop taking one more flight of stairs in a day – bottom line is that I will continue to need help sometimes. That’s just the way it is. But I feel this house is a part of me and giving that part of me up might be where I draw the line for this obnoxious disease. Or as Arya Stark likes to point out, what do we say to the god of death?

Not today.

I’m not ready for that part of me to die. I’m not ready to stop thinking of myself as capable, strong or useful. I’m not ready to walk away from this place of happiness. I know someday that time will probably come. But that time is not now.

Want to know what right now is the perfect time for, though? It’s the perfect time to add a small addition to my house so I can have a bathroom, laundry and a handicapped accessible rear entrance on this big old house. Now is the perfect time for that. So that’s exactly what I’m gonna do. We’re gonna do some renovating, folks. And then we’re gonna get us some electric wheels because this not being able to walk more than a few feet is really getting freaking old. Let the mayhem commence! We got this.