They expect me to shower. Not just once. No they expect me to shower twice. Using some weird red antibacterial soap that looks and smells strange. Oh, I did it tonight. I took the world’s quickest antibacterial shower possible because you can probably guess how my legs are doing tonight. On this night of nights, the night I’ve been waiting for for what’s felt like forever.
As I sit here perched in my bed, wearing my last pair of clean non-skid socks feeling all disinfected and exhausted, I’m wondering what I’m going to feel like tomorrow at this time. I’m wondering if I’ll need the non-skid socks I packed in my overnight bag just in case. I’m wondering how long it will take to wean me off of these damnable oral meds. I’m wondering if the magical hockey puck will have an immediate impact or if it will take more time and dose tweaking before the real relief starts. I’m wondering what real relief will actually feel like.
I’m feeling something I rarely feel tonight, something so foreign it took me a hot minute to find a name for it. I’m feeling lonely. I’m feeling like on this night before the day when I’m going to wake up and take another disinfectant shower and hope to make it out the door without falling or something terrible happening, that it might have been nice to not be alone. I’m not lying when I tell you I’ve not felt this feeling in so long I literally cannot remember the last time. Even at my worst in the last few months, I’ve never wished to not be alone. I’m not sure what that says about me but I am sure that this feeling I have right now is completely foreign to me.
I can hear rain hitting my windows like needles meaning it’s probably of the freezing variety and it’s making me wonder what tomorrow morning is going to bring. I’m not totally alone, as it turns out, my sweet old cat Owen has come to perch on my lap while I try to type and pet him at the same time because his purring is soothing to me. Owen hasn’t been well these last few months and I’m not feeling great about leaving him. He’s very old. And very skinny. And his frailness makes me wonder what might happen to him while I’m away for a short while. My pet sitter will love on him and make sure he’s eating and do all of the things I would do if could be here. He will probably be just fine.
It’s me I’m worried about. Being away from this house for more than a few hours is going to feel really strange to me. I haven’t done it in so long I can’t remember the last time. Or maybe I can. It was my last hospital stay in July of 2017 for what we thought was a relapse. Back when we thought I was a relapsing kind of girl. This time feels different. Maybe because it’s planned. Maybe because it’s about a focused effort to make part of my life a tiny bit better.
This time, part of me is feeling a strange kind of relief to think of being in a place for any period of time where my only focus is on getting me better. Stronger. More steady. It feels something like peace. How strange!
In the four years since my diagnosis I’ve never done that. I’ve never had any period of time where I didn’t have to worry about something affected by my ill health – whether it was work or the house or the cats or a family thing or something on top of what was happening to me physically and mentally, brought on by this rudely abrupt disease that completely disrupted the flow of pretty much everything. I never could take the time to focus on just this. Just my MS and how to make my life a tiny bit better.
This is the first time.
I’m afraid. I’m excited. I’m full of what ifs and what if nots. I feel like I’m at the beginning of a new phase. But one I planned this time with the clear intention of improving something about my experience of this disease. Everything else I’ve done in the last four years has felt like defense. This feels like offense. It feels scary but it also feels right.
It also feels right to admit that I feel a little lonely tonight. For the first time in a really long time it feels ok. Maybe it’s because I know I’m not alone. I’m surrounded by all of the people sending me prayers, good vibes, positive intentions…and messages of love and support that keep coming in and reminding me that I’m really not alone. It just feels strange to be on the cusp of something kind of big without anyone to share it with.
So I’m sharing it with you. Thanks for letting me do that.
It’s half an hour before my next doses of my meds. Another six hours until the dose after that. And then? I have no idea what comes next! It’s scary as hell. And it’s thrilling. It’s so many feelings that the girl with all the words is having trouble finding just the right ones.
One more sleep. One. And a whole new chapter begins regardless of how it actually plays out. Something is going to happen that I chose to make happen instead of waiting for the next thing to happen to me.
And that feels good.
It also felt good for my last meal before surgery to be topped off with something called Turkish delight. Thanks to Dawn B for sending me her favorite Canadian treats and for picking up the shards of hope I’ve left on the ground behind me for when I need them next. That was her analogy and it was perfect. Just like that Turkish delight. Whoah. That was yummy.
See ya on the other side, BBADdies.
Anneen
February 13, 2020 11:48 pmFeb 14 came so fast! I worried about you making it to this date. And here you are!
I can’t wait to see how this helps you. I hope your dream tonight is about being able to run up and down your stairs.
Good luck tomorrow!! ☘️
Ange Cartmel
February 15, 2020 6:32 amWell it’s Feb 15th and I am praying that the new journey is the start of everything you want it to be and all of us who dip into your cyber life want it to be for you ❤️
Jean
February 19, 2020 10:07 pmThinking of you Bethy. 🌻💐 Sending strength your way…☀️🦚🍒