I used to get all geared up for these end of year posts, back when I was a blog writing newbie. I could feel the inspiration flowing before I even sat down to write. Last year was tough, though, and while I struggled to put a positive spin on 2018, I eventually got there and found my way to finding the good in that no-good very bad year.

And now I find myself writing a very similar post to last year’s post. It makes me wonder if I’ve been at this blogging thing a bit too long and maybe I should really consider hanging it up and moving on. Every time I’ve thought I’d hit rock bottom, I hadn’t. Every time I thought the latest treatment was going to be the thing that helped me get on with my life without my MS consuming my every thought, it wasn’t. It’s the end of another MS year, my fourth, and I’m once again waiting on the next big thing that might make my life more livable. And I’m plagued by the worry that this might not be “it” either.

If 2018 was the year I got familiar with the inner contents of my psyche and my home, 2019 took that to a whole new level. I got physically worse and worse to the point where I began to live my life in 360-minute increments of time. That’s the 6 hours of minutes between doses of the two different muscle relaxers that I take to try managing my extreme lower body spasticity. The truth of the matter is that 30mg of Baclofen and 8 mg of Tizanidine start to wear off around hour 4 meaning I have much less than 360 minutes of workable limbs. I use the term “workable” loosely. Those 240 minutes are usually spasm-free but not always. My legs might move a bit better during those 240-minute windows but not always – sometimes my toes curl painfully so that when I take a step I’m walking on top of my toes and not on the bottoms. My hip flexors get so tight that no amount of pigeon pose gets me relief or makes it easier to lift my legs off the floor to take a step.

I can’t get through more than four hours of sleep at a time. When my drugs start to wear off, I begin to feel my body freeze up – which is usually when I feel like I have to pee and begin to panic that I might not be able to move my legs quick enough to get me out of bed and to the bathroom. That fear forces my eyes open while I pull at my legs with my arms to prevent them from spasming straight out in front of me making them completely unmovable. I drag my dead legs back to the bed and take my next dose trying to remember if it’s too early but finally just taking it anyway because I need to get back to sleep. Four hours later it happens again and I try to force myself to wait the extra two hours before dosing up again because if I keep dosing at four-hour intervals that will mean one whole extra dose in 24 hours and that’s not OK.

This is what my life is like right now.

I’ve distracted myself with holiday get-togethers and time with friends and family but pretending I don’t feel like absolute shit 90% of every single day is exhausting in and of itself. Talking to people who ask me how I’m doing depresses the shit out of me. How am I doing? Well. I’m glad you’re in my living room because if you aren’t chances are you wouldn’t be seeing me at all. I haven’t felt safe enough to drive my car so my wings have been severely clipped. Being carted around like baggage by one family member or another got me out of the house for Christmas brunch and a holiday visit at my sister’s house but the number of people and the effort it takes them (and me) to make these things happen is daunting.

I’m tired. I’m foggy because of the drugs. I am in constant threat of painful spasms or legs that won’t move at all. I am barely living right now and exhausted by the effort of pretending this isn’t becoming more than I can take. I cry all of the time. I just get overwhelmingly sad trying to talk myself through the panic that sets in when I start to worry that this is going to be what my life is like now.

What if the pump doesn’t make a big enough change? What if it doesn’t make a difference at all? Yes, 2019 was the year that I was fortunate enough to make my home more easily navigable for me. I have not one but two stairlifts that allow me to get to my bathroom and bedroom and also have made it possible for me to do my own laundry and scoop my own litter boxes which is really awesome. The thing is, when I got these contraptions that make my home look like some kind of weird adult-size mousetrap game I thought I was doing it to conserve energy to help me live more of my life outside of my home. That’s not how things have worked out so far. Now I’m typing words like “it’s awesome that I can do my own laundry and scoop my own litter boxes.” What? Is that what makes me happy in this new life I have now?

In my last conversation with my precious (former) therapist, Cheryl, I asked her if I could get through a couple of more months like this before I theoretically get my baclofen pump surgery and recover from that and then slowly begin the process of getting stronger again. Could I stand this kind of life long enough to get me through this phase? She assured me that I could. What she actually said to me via text on the day after my little retirement party we had for her at my house (because duh) was, “Let perseverance be your engine and hope be your fuel.” I thought that was pretty pithy of her to come up with on the spot like that but turns out it is a quote from someone called H. Jackson Brown Jr. who wrote a book called “Life’s Little Instruction Book” which I’m sure I would never read but if I did I’d likely find it super irritating. But what Cheryl actually did say that was all her own was, “I believe you can do this because I believe in you.” Jesus. I wish I did.

I move from room to room in my house like a dirty ghost who really needs a hair washing. I sob while snuggling with my cats begging them not to die because they’re the only two I have left and losing them might push me right over the edge. They just look at me like I’m crazy and wonder why it’s taking me so long to get the food bowls on to the floor without also landing myself on that floor as well. They look confused by my jerky movements. They scurry to get out of the way of my new-fangled stair climbing contraptions. I think they must think crying is a new language they’ve not experienced so much from me before these last couple of years. They probably think I’m crazy for spelling out D-I-E when I beg them not to die because I don’t want them to get any ideas via the power of suggestion.

I’m losing it guys. Straight up. I am losing my mind.

I’m meeting with my surgeon on January 6. His name is Nestor. I mean, that’s his actual first name. Not many things have made me laugh in the last few months but this did. Having a surgeon with the name of a donkey from a children’s book just made me chuckle a bit. I’m anxious about meeting Nestor for lots of reasons but one of the biggest is when I find out when I can get this fucking procedure done already. If I have to wait for months to schedule getting this glorified hockey puck inserted into my abdomen, I may lose it right there in front of the long-eared Christmas donkey. The fact that I’m excited about having a metal hockey puck-looking machine embedded into my abdomen is shocking and should give you some sense for the level of desperation I feel.

So, yeah. This isn’t your run-of-the-mill looking forward to 2020 end of year blog post, is it?

I’m darker than dark. I’m so tired of my house that I forget to be grateful that I have it. I’m so doped up that I can’t even concentrate well enough to read. I’m stuck on book #21 for the year, a good 8 fewer than my last year’s total which was less than what I’d read in 2017. It’s hard to read through tears but it is possible to watch television in your bed whilst sobbing so that’s what I’ve been doing. It was almost 60 degrees here in Pittsburgh today and I couldn’t move my legs well enough to get to my car to go for a little drive through the Starbucks to grab a white chocolate peppermint mocha – which has become my winter weather fun outing when my legs are cooperating. I’ve done this fun winter weather outing exactly one time but that doesn’t mean I don’t want to make it a regular thing. It could happen. I really want it to happen.

In the spirit of trying to stop being so ungrateful and annoying and to attempt to put something out into the Universe that I’d like to see manifest in 2020, I’m going to set a few very low-bar goals for 2020.

First, I’d like to be released from my 360-minute life-cycle windows. I want to say goodbye to my oral muscle relaxers. Since this is the actual intent of getting the baclofen pump I’m feeling like this is a reasonable goal. I want to be able to sleep without feeling afraid of my own body. Maybe once I have some decent rest, a few other things might come a bit easier? Who knows? I better not get too greedy with my Universe-manifestation statements.

I’d like to get back to feeling more confident driving my car once my limbs aren’t made of actual stone.

I’d like to get back to getting into my office more in 2020. I mean, once I recover from surgery and all of that. I know how incredibly lucky I am to have this house to cave up in when my body betrays me in 360-minute-intervals but I’d love to get out of it at least once a week? Maybe once every two weeks? Again, it’s hard to shoot too low with this kind of thing when one considers my last three years of near constant downward progression.

And finally…if none of these things happens because some new fresh hell is foisted upon me by my fucked up central nervous system, I hope I can find a way to dig deeper and find some much needed grace. I’m a grace-free zone right now. I’m more of a hot-graceless-mess, if we’re being even a little bit honest. I keep begging the Universe and my inner badass to help me find a way to keep going if this keeps getting worse. I mean…I have a progressive, chronic disease without a cure. There is a fairly good chance things could get worse. I need to find a way to live with it – or live better with it? I’m not even sure what that means to me anymore I just know I’m not doing it right now and it’s taking a toll. I’m not impressing anyone with my inner peace and graceful largesse at the moment. I’m not an inspirational cripple no matter how many people tell me they find me “inspiring.” I sincerely want to laugh right out loud when people say that to me but I don’t because that would probably seem rude and nobody likes a rude housebound cripple.

Wait. That reminds me of one more thing to add to my list of low-hanging goals for 2020 and this one is a real doozy: I need to stop beating myself up with my own internalized ableism.

I never even knew that was a thing but since discovering the chronic illness/disability community on social media I have learned a whole lot about ableist unconscious bias. What I’ve mostly learned is that I’m the biggest ableist asshole I know. I’m the one who struggles with trying to see this disabled life as a life worth living. I see you out there doing it and I am impressed as hell but I can’t see myself doing what YOU do. I lack the grace to embrace this new life I’ve been dealt and I really need to focus some serious work, reflection, hell even writing – on learning that this disabled life isn’t less of a life than I had before I was diagnosed with MS.

Maybe if I invest that time and do that work that last sentence won’t feel like such a bald-faced lie.

Goodbye, 2019. I won’t miss you.