I’ve been feeling particularly shitty lately, as I think most of you probably know. It’s meant taking everything pretty slow, resting a whole lot and pinning a lot of hope on an elusive drug that I was only recently approved to take. But not quite yet. I still have at least two weeks left in my two month flush post-Tysabri.
The short story is that I believe this shitty feeling that has come down on my head like a dull, aching torpor is temporary. I mean, what else do you tell yourself when you feel like the wheels are coming off of your life and you don’t know what’s coming next?
It will be fine. This is temporary. It will get better. This is the two month flush and you knew it was gonna suck.
Today got the best of me, though. Most of you know, I live very happily alone. You might also know how much I love my home, the first place I’ve ever lived alone that I bought and had restored for myself to my very particular specifications after my husband died in 1997. You could say this house, my home, has become the embodiment of my safe place. The place I can go when things are hard and feel instantly better. The place where I can hide from the world and feel happy, content and protected. The place where I feel safe.
But lately? Lately, my home has become a source of stress for me. It starts with the fact that my MS presents itself mainly with crushing fatigue and mobility issues (walking problems, muscle weakness). Have I mentioned that fatigue? Right. I guess I did. So I’ve been making little changes to help keep my sanctuary an actual sanctuary and not a source of constant stress. Living alone, taking care of an old house, it’s inherently taxing. So I did some obvious things to make it less taxing.
I got rid of a lot of extra stuff. This stuff not only bore down on me physically due to it’s constant need to be moved about, organized and dealt with in some manner but it also bore down on me emotionally. It’s not a lot of fun to look at clothes you can no longer wear because they take too much effort to don, or require high heels for length reasons. It makes you feel bad, like you’re compromising the things that make you, you. The solution seemed pretty obvious. I got rid of a lot of stuff! Bye bye extra stuff. You can haunt me no longer. And it felt good.
I tried to eliminate things that required other people to help me, such as, instead of annually begging people to come over and help me with window air conditioning units each summer, I installed central air a couple of years ago. Easy! Now I can just turn on a switch and cool air come outs and I can thus deal with the summer heat. How easy was that? Done. On to the next thing.
I couldn’t get into my giant jacuzzi tub so easily anymore so I had it torn out and put in a walk-in shower that is so much easier for me to use. It was such a relief not to have to vault over the side of that insanely huge tub in order to take a damn shower. Not that I take more showers now than I did before or anything, that would just be insane, but it was a source of stress so I removed it.
I have trouble keeping up with the cleaning of this house what with the four giant shedding felines who allow me to share their domain, so I had to hire someone to clean. I did this well before I had MS, don’t get it twisted I have a very clear lazy streak that is undeniable, but once my old cleaning lady dumped me because I asked her to do some more intense cleaning after my diagnosis, I had to find a new person who would be able to help me keep up with the constant hair and reality of keeping a house clean when I can barely get myself out of bed to get to work. It took awhile, but I did find someone who came highly recommended and while it costs me much more money than my old cleaning lady did – it’s worth every damn penny and boom! Another problem solved.
But for all of those things you can pay someone to do for you, there are the things you really have to do yourself. There just are. It could be because you’re impatient, or too particular (like the fact that I don’t let my cleaning lady change my sheets because I don’t like the way she does it…hmmmm I just said that) or because you think you SHOULD be able to do them.
Today I was almost beaten by a few of those things.
The weather has changed. It’s getting warmer out and the birdies are singing so it’s time to clean up the front porch and put out the pillows and chimes and things that make me happy in the spring time. I thought to myself, “I might not be able to do this by myself.” But I quickly shushed those thoughts because I did it last year and goddamit I’m tired of no porch pillows on the swing and chairs and stuff and how hard could it be? I would rest between tasks. I’d go slow. It would be just fine!
I walked back to my garage to gather my wares. I loaded the garden hose (for porch cleaning) into my wagon. Then I loaded in the bags of porch pillows I had stored in there for the winter. Then I found my porch chimes that I love to hear twinkling in the spring time when the windows are finally opened and it’s not too hot yet for the air conditioning to stay off. I wheeled all of these things to the front of the house kind of laughing to myself because, oh my god, I OWN A WAGON! And I was using it to limit my trips and I’ve officially become that old lady. With a wagon! But I digress.
It started to go bad when I put my 30 foot garden hose back on it’s holder. Thirty feet of hose is heavy. And no, I do not need 30 feet of hose but there you have it. I managed to lift it on to the hose holder attached to the side of my house. I connected it up to the nozzle. BOOM! Victorious.
Or not. I had placed the giant hose on the holder with the loose end with the nozzle on the bottom so I couldn’t get it to unwind. I had to lift if off the holder to change it. Somehow, I lifted it off and then dropped the whole damn thing on the ground and rested before I RE-wound the whole hose back on to the holder the correct way.
I sat and rested once the whole damn hose was re-wound and in it’s proper place. I turned the water spigot on and nothing happened. Oh! Right. I had to go down in the basement to turn the water on to the outside. Easy! I walked really slowly down the steps to my basement. I was pretty shaky by this time so I sat and rested down there for ten minutes before I turned the turny-thing connected to my pipe to turn the water on to the outside nozzle. It immediately begins to drip water on to the basement floor. I’m sure it will stop, I tell myself and head back outside to hose off the porch.
I get to the hose and turn the water on and promptly drop the spigot to the hose nozzle on the ground facing upward and it sprayed me directly in the face. OK. That’s comical and nobody saw, so yay me. I can do this!
My whole body is on fire by now. I wish I could explain how few steps I’ve actually taken to get all of this accomplished but those few steps are apparently much too much for me so I sit on various porch chairs and lean on railings until the porch is hosed off and I can begin placing cushions. I sit flat down on my still wet porch swing because I can’t stand up for five more minutes. I can feel my yoga pants getting wet as I sit but I don’t have it in me to stand up.
I can’t keep myself from thinking over and over again, “I did this last year! It wasn’t this hard. I did it AND I planted flowers and it looked glorious and it wasn’t this hard.” See photo below for last year’s finished product:
OK, I did plant the flowers on another day and it took me a really long time to do it while mostly seated but I did it. And it looked lovely. Having my porch look so lovely makes me happy. I wish it didn’t because as it turns out, I can’t easily do this year what I could do much easier last year. I think this means I’ve gotten worse.
I know this means I’ve gotten worse and it is starting to really eat at my broken brain.
I finished hosing off the porch, re-wound the hose, attached all of the various cushions to various chairs – and between each step I would rest or sit down and wait out the fire in my lower back and the shaking in my legs to stop because that’s just what we have to do now! We have to rest between the steps of any job and it makes everything take longer but it means we can still do things ourselves. (We also start thinking of ourselves in the plural for some reason, because with my internal monologue that is going on the entire time I’m stumbling around outside, it sincerely feels like I’m talking to someone else and not just myself. All of us are weak and stumbly by now.)
I come back in the house and decide I better go back down to the cellar and make sure that pipe isn’t still leaking. That’s when I see this:
Ok. So it’s not stopped leaking at all and is now, in fact, creating a river that runs through my thankfully unfinished basement. I immediately turn that water back off and sit down. To rest. AGAIN.
That’s when it happens. It hits me that doing these very basic tasks, even with frequent resting, is really too much for me. I should say, “…is really too much for me today” but I’m not feeling all that optimistic at this point.
I start thinking about the flowers I will want to plant in a few weeks. I start thinking about the work I have to go to tomorrow and the busy week I have in front of me. I start hearing the three different doctors that I saw just in the last week tell me over and over again in my head how important it is for me to exercise. “When was the last time you walked a mile, Maribeth,” asked The Great Scott himself. “You really need to find a way to work out Maribeth. You don’t want your muscles to atrophy,” said my very helpful gynecologist using the exact same words she said to me last year around this time. “Maybe swimming? Some people like yoga,” said my brand new primary care doctor who didn’t even like the sound of the idea of actually doing yoga herself.
How am I supposed to do those things when I can’t even do the regular things? Regular things like waking up, working, going to lunch, doing very minor seasonal chores, feeding cats, doing laundry, making dinner, going to the grocery store, getting kitty litter, scooping kitty litter on two different levels of my home, changing the hair infested sheets…Just freaking EXISTING.
I have read a lot from other Single Spoonies. I do know I am not alone. I know there are other people out there who are trying to deal with this stuff by begging favors and asking family members for help and making dates for helpers to come over and adding to the ever growing list of people we pay to do normal tasks (I’ve taken to thinking of them as my other staff). I know this is what it’s like. I get this intellectually.
I can’t stop looking forward to the day where I finally accept it. Or where it doesn’t feel so goddamn overwhelming. I can’t stop looking forward to the day where I don’t crumple in a ball and cry on the phone to a poor friend who happened to call me at the second I metaphorically tumbled right over the edge (well, it wasn’t a total accident. I may or may not have texted this very helpful friend with a desperate cry for help).
I didn’t expect a phone call though. People don’t do that anymore! I knew I had to answer because if I didn’t he would think I was rolling around on the floor unable to get myself to my feet. I wanted to stop the waterworks before I said ‘hello’ but hearing another human voice at that very moment just made me cry more.
He made me laugh. That’s a damn good friend. Then when my god-send of a nephew stopped by to help carry the five boxes of kitty litter into my house from my car, it happened all over again. My darling boy who I usually am trying to help in some way was helping me. He sat with me in my chair and a half while I cried and told me everything would be OK. He would always help me with my chores (and yes, that made me cry harder and I’m crying again right now just thinking about it).
I thank the universe I have these people (and many more) in my life to help me get through it when I can’t see my way to feeling hopeful. I know it’s the two month flush. I knew it was going to be bad. It’s funny how that knowledge doesn’t make it any easier when your body just freaking craps right the hell out.
I’m going to bed now. It’s not even 9:00PM but that’s how I roll these days. I have to take a shower tomorrow. I have to go to the office, finally, because there are things I have to do while connected to the stupid on-site network. It overwhelms me just thinking about another two weeks or more like this. It brings forward the terrible thought that is always lurking, sneaking around in the back of my broken brain…
What if the new drug doesn’t work?
Then I immediately shoo that thought. I look out the front door at the sun setting over my neighborhood. It’s really gorgeous tonight. I remind myself that the ability to sit here looking at the sunset from my comfy chair inside my personal refuge is only one of the ways in which I am incredibly fortunate.
It has to work. It just has to work.