I’ve written before about the spaces in between. What I mean by that is when you are newly diagnosed with multiple sclerosis, your life starts to be marked by major disease events. Your first MRI. Your first DMT. The first time you end up in the hospital with a relapse. Your first cane. Your first time being wheeled around from place to place. These are big events. They tax your brain and give you something to focus on while your life suddenly looks and feels nothing like it once did. Some of these events are not very bad. Some of them out and out suck. But they all give your brain something to handle. Something with which to keep your thoughts occupied until the next crisis hits.

Now that my shingles experience has passed, now that my third Ocrevus infusion is in the bag and now that I’ve started this waiting period between what’s happening now and what might be happening in September when I see The Great Scott again, I feel a bit lost. I’m in between again. Those long, languid periods of time when nothing much happens. I’m in one right now.

I started physical therapy a couple of weeks ago and realized something that probably shouldn’t have been such a surprise to me…that shit is hard! It’s not until someone is evaluating every aspect of your physical life that you start to think seriously about how messed up things really are. It’s not until you’re on a low platform doing some simple side leg lifts that you realize how hard it is to try to move your stupid legs. At all. It’s not until you’re done with your 649 steps to PT and 649 more steps from PT that you realize how this little bit of activity is going to take you out for the rest of the day.

I started that day when the air was cool and I felt kind of OK feeling like I could handle this. I ended it feeling like shit on a shingle. Completely demoralized. Completely overwhelmed. How do you come back from something like this? How long is it going to take until doing ten side leg lifts doesn’t feel like you’re lifting the dead weight of a tree trunk that happens to be connected to your body? How long until I can walk further than 20-30 feet without feeling like I’m going to collapse? It’s been almost three years, for god’s sakes, how long is this going to take?

I’m sure by now you are shouting the answer to that question at your computer screen hoping I can hear you loud and clear right through the interwebs: “It’s going to take a really long time, Beth. It’s going to take so long you’re going to think it’s never going to end. It’s going to take as long as it takes and you have no fucking choice but to do it, so shut up and do it.”

I know. I really do know. As my friend Ardra said to me in a recent comment, “We do it because we have to, that’s why we do it.” It might not help that much at all, really, but you have no option but to do it even if it only helps the tiniest bit. So I’m doing it.

I also officially joined the MS Gym. For those who aren’t familiar with this free Facebook page, you can learn about it here. And you can learn about the paid membership site here. The short story is that Trevor Wicken has developed his program around rebuilding neuro-muscular pathways that can help improve MS symptoms. With MS, your brain is blocked or slowed down by lesions that get in the way of normal pathways creating the difficulties we all have with spasticity or pain or walking…all kinds of things. It’s an amazing resource and pretty fantastic to have the ability to benefit from Trevor’s experience and dedication online. I joined planning to follow the program and do one video per day every day 6 days a week.

I also went back to work after my week of staycation.

I realized then what is obvious to all of you already and that is doing all of these things is really difficult to do simultaneously when one is recovering from shingles and when one’s body hasn’t felt even remotely decent for months, years if I’m totally honest. I dragged myself into the office, out into the outside world. It was so good for me! Mentally speaking it was exactly what I needed. Physically? Yeh, not so much.

I am so tired. So spent! It’s almost impossible to imagine how I could accomplish all of this regular life stuff, my PT and my MS Gym routines every single day of the week.

You won’t be surprised to learn that I’ve not pulled it off. I had to cancel PT because of a work meeting on Friday. I had a lovely massage this afternoon for 90 minutes and when I got home, I was just too wobbly to do my leg lifts. The straight truth is if I got on the floor, there was a damn good possibility I wouldn’t be able get myself up. I might pull off a simple neck pain video or something before I settle in for the night but I also might not.

This is how I’ll be spending my time for the summer while I hide from heat (and the accompanying squid body effect), keep up with work so I can continue to feel at least a little bit like the Old Me and squeeze in some PT and exercise in between. I start to wonder how long this can last…How long can I be in between my old life and my new life? How long until things start to feel even a little bit normal?

The simple truth of the matter is that it’s already been long enough that I almost can’t remember what I used to do for fun. I forget what I did with my days when my days weren’t limited by my stupid legs and their refusal to operate like legs should. I forget what it feels like to have a plan. I forget what I used to do. Maybe I didn’t do all that much before anyway? Or maybe it’s just been so long since anything has felt normal that I sincerely can’t remember.

While I was off work I got a random email from the Cakebread Cellars, my favorite wine maker in Napa. I visited there a few years ago with my travel buddy, my friend Mary. Back then, a little jaunt to Napa to check out some wineries was something I would totally do. Mary and I used to take awesome little adventures throughout the year. It feels like another life! But it wasn’t all that long ago.

On this particular trip, I must have signed up for the Cakebread mailing list because I get occasional email with news of varieties or great deals (Cakebread, like most things I find myself loving, is not cheap). I clicked open this email and read about a case deal on reserve Chardonnay. Without even thinking, I clicked on the link and ordered myself a case of wine. Just like I used to do. Back when drinking wine was one of the things I really loved doing.

I haven’t had much wine in these past years since diagnosis for a couple of reasons but the biggest one is the insane cocktail of prescription medications that I take throughout every day doesn’t mix well with alcohol. I’m shaky on my feet without the help of wine. I don’t need any help landing face first on concrete or hardwood.

But I decided that I was going to drink that wine this summer. If I only have one glass once a week, it will still be worth it. If I can share it with friends who might be lured to my home by the promise of really good wine and a nice porch to sit on, even better. I had to accept the reality that these visitors would have to take me as I am. Likely unclean and sporting bed head. Certainly covered in cat hair. Definitely in yoga pants and a tank top.

I would also have to accept the reality that I don’t have much to talk about these days that isn’t related to this cursed disease.

When people ask me what’s new, I can honestly say there is not much material that isn’t related to my damaged central nervous system. I can talk about the book I’m reading or the show I’m watching but beyond that, I’ve got a whole lot of material about how crappy I feel and what new drugs I’m considering and what havoc they may wreak on my body but I have to tell you…Nobody wants to hear about that and I don’t even want to talk about it.

So I am thinking I can lure people here with wine and I will listen to them tell me about their lives. Their stories. Their adventures. I can do this for as long as it takes until I have some stories and adventures of my own that don’t revolve around me struggling with something really easy or falling flat on my face in my own living room.

Some days, I will also drink my glass of wine alone, sitting on my swing, listening to the breeze in the leaves of my magnificent front yard tree  and the twinkling of my many sets of wind chimes. On those days that it’s not too ridiculously hot, I will enjoy my solitude without thinking about drugs, diseases, injuries and exercises for as long as it takes to drink that one glass of wine. I will remember that I used to enjoy a good glass of Chardonnay and I still do, even though every little thing in my new life would be utterly strange and foreign to Old Me.

Old Me would wonder why I don’t like to be the center of attention anymore. Old Me would wonder why I gave up on makeup and any semblance of fashion sense. Old Me would wonder where all the action is.

But New Me will enjoy a glass of Cakebread Chard and allow that to be enough for now. New Me will remember that there are exercises to struggle with and meetings to remember to attend and so much to keep up with while my body tries to settle into some kind of new normal.

The new normal will arrive when it’s good and ready. I might as well enjoy a great glass of wine while I wait.