Cheryl, my loyal and trusty therapist, announced today in our session that she thinks I’ve officially entered the anger phase of my MS mourning.
I laughed out loud. I’ve felt like I’ve been in the anger phase for a long time, myself, but she’s probably right. It’s pretty safe to say that I’ve been firmly in denial from the very beginning when I first heard the words, “You appear to have multiple sclerosis.”
I immediately jumped to the position I expect most of us would. “I have MS, but MS doesn’t have me!” Shaking my fist in the air and muttering, “As god is my witness!” But here’s the thing. Lately, it does feel like MS has me. It just does.
There is literally nothing about my life that hasn’t changed, not since my diagnosis, but even before that. Since those early days when I just had the horrible, nagging feeling that something was very wrong, even if I didn’t know what to name it yet, my life has been changing little by little without me even noticing it. Small adjustments at first. Bigger ones later. I’m sure there will be bigger changes yet, to come. All of those subtle changes have added up now and the result is a life I sometimes don’t even recognize.
The ironic thing about this new life I barely recognize is that it’s also in a constant state of flux.
I never know if I feel better (or worse) because of my disease, or my treatment, or the various pharmaceuticals I take for symptom relief or if my state of mind is affecting all of the above. I’m always guessing.
Today I’m trying to decide if it was the right choice to slow down my Tysabri treatment. Tomorrow is infusion day, you see, and I won’t be in attendance. Dr. Scott, my neurologist affectionately dubbed The Great Scott (or TGS for short), decided to put me on an every-other-month schedule at my last appointment. He isn’t convinced, and neither am I, that the Tysabri is helping me much. There’s something new coming out in 2017 that he thinks will be better (and safer) for me, due to my JC positive status. So I won’t be getting infused tomorrow, I will be going to work to entertain visiting dignitaries and visit more commercial real estate instead.
Here’s the truth. Provigil makes me feel like I can keep up, but some days even that isn’t enough. I feel weak and tired today. My gut tells me I will be in bed before 8PM because I need to be in the office before 10AM and that requires a herculean effort in the morning. I feel like maybe the Tysabri was helping me more than I thought it was, but we made the decision and now I need to play it out. Am I just having a few bad days? Or is this going to just keep getting worse as the Tysabri completely disappears from my system. By November, when I go for infusion again, will I be even worse?
And in the meantime, what else is going to change?
I’ve already become almost unrecognizable to myself. Of course, you wouldn’t agree. I look the same to you. But I’m not. My clothes are simpler and much less fussy because I just want to be comfortable. My shoes aren’t even remotely like what I normally consider acceptable because it’s hard enough to walk as it is – why make it harder? I used to take a great deal of time and focus applying elaborate makeup each day because it was so much fun to me (really)…lately? I’ve been going the more basic route, if I wear makeup even at all. You might not be able to tell I’m sporting bed head but I sure can. Yesterday I went to work without a single piece of jewelry on! I’m telling you…that has never happened before.
I have my routines. My armor. My persona that I’ve cultivated over the last 49 years and I’ve come to enjoy the result. You might say, “But Beth, I want to be comfortable now too! I have changed a lot myself but just as a natural evolution of maturity and getting older and wiser!” And I would give you kudos! I really would. But I resent it. I loved the stuff. The costume. The face I put on every day. I really loved the shoes! It’s probably not prudent to admit it, but I felt like I was enjoying who I was for the first time in such a long time. I was comfortable in this skin, imperfect as it is. All of those insignificant things, the costume and the accessories and the makeup, they were part of it! I could act like I’m much deeper and more mature than that, but I’m not. Sometimes those things got me through a day.
I know I sound like a big whining mess. Buck up! Look on the bright side. As Cheryl said today (who told me not very long ago that she, too, has MS! How is that even possible?), nothing about this doesn’t suck. Even when you try to put a positive spin on it – it doesn’t really work. You move on to acceptance because what choice do you have? Nobody wants to be the whining complainer who is pissed off about her stupid shoes!
But you know what? Right now? That’s exactly who I am. I am pissed off about all of it.
Today, I wore a new pair of shoes that were ambitious for me (crazy…compared to my former standards…but anything other than completely flat shoes have been out of the question). These shoes have a little heel but they are basically flat because of a platform. I surmised…I trip in flats! I have to walk slowly no matter what! I get tired walking in bare feet. What the hell difference could it make for those things to happen in shoes I don’t hate? Fuck it. I wore the damn shoes. I felt rebellious and defiant in my mostly-sensible shoes.
Maybe MS doesn’t have all of me yet.