My special little snowflake

I had kind of an epiphany since my last infusion. Something clicked in my brain around the time I heard the second medical professional say to me, “That’s just your MS.” My first reaction to that phrase was anger (you might remember…I wrote about it just a few days ago).

Just my MS? JUST? Seriously? You can say that to me and keep a straight face? It’s not “just” anything, it’s my goddamn life.

But then, as usually happens, I had a few days to ruminate; a few days to let the golden juice of infusion flow through my bloodstream and listen to my thoughts and notice myself thinking a little differently. Those few days of feeling just a little tiny bit better made room for some other thoughts to creep in, thoughts that weren’t related to my general state of panic and bald-faced fear.

These new thoughts sound something like this, floating around in my spotty brain while I lie in bed at night…

I’ve been waiting to feel better this whole time. I keep thinking, “I’m going to go into remission and this thing is just going to be something that occasionally ‘flares up’ and when that happens I’ll deal with that and then I’ll go back into remission and I’ll be fine.”

Here’s the lightning bolt…I’ve been in remission this whole time. This isn’t a relapse. This is JUST my MS. My multiple sclerosis, precious little snowflake disease that it is, presents itself for me as crippling fatigue, weakness in my legs and general limitations around my ability to walk. There are a lot of other ways MS can present, but this is my MS. Right now, anyway.

My MS creates mobility challenges, challenges keeping up with regular day-to-day life from a physical standpoint, and the accompanying mental challenges when I realize that somehow I have to live with this disease alone. No. Let me check myself here…I know I don’t have to live with this disease alone. I am surrounded by people; people who love me and want to help me. But I live alone. And I love living alone. So, my particular challenges eventually lead me back to that basic fear: What if I can’t live alone?

The nature of our health care system doesn’t lend itself to these sorts of multi-systemic diseases. Nobody ever really explained this to me or prepared me for what would or even could happen. I’ve seen my neurologist twice since my diagnosis, both times for 20 minutes. He tells me the bare minimum and leaves it to me to figure out the rest. I guess when your disease is a snowflake, this is the most expeditious route for care to take. He can’t really prepare me for what’s going to happen because there are so many, many things to prepare for. I’m guessing he probably just didn’t want to leave me thinking of this disease as the end of my life – so nobody really tells you much of anything. The most specific thing he said to me so far was, “We’ll be optimistic and say you probably won’t even need a cane until you’re much, much older.” Well. Ok. I guess?

It wasn’t until the light bulb went off after this past infusion day, that it finally hit me. I am in remission. This is my remission. I’ve never perceived myself as getting any worse, because I was in treatment and the treatment was helping me to mask my MS but it was always there. The disease modifying treatment that I am on is clearly helping keep my MS in check (most days). When I skipped a treatment, that’s when things fell to shit. That’s when I could barely walk across the street, let alone walk 100 freaking meters. That’s when the wheels started coming off. That isn’t a relapse. That’s just my MS.

A relapse is defined as any new symptom that lasts for more than 24 hours. Relapses are major. They lay you out. Sometimes they blind you. Sometimes they lead to hospital visits. Usually they lead to more IV steroids. That is a relapse. What I have? That’s just my MS.

I don’t say this in a hopeless way. I feel like it’s important to point out that this is a decidedly “Bethy Bright” post. Sounds crazy, I know but bear with me.

I’ve been waiting to be better since the day I was diagnosed and someone mentioned the word “remission” to me. I never realized that this IS better. This is the best it’s gonna get. I mean, short of some miracle new treatment or some unforeseen cure, this is how it’s gonna be. Just knowing that, understanding that reality, allows me to stop waiting to feel better. I can’t wait to feel better because that’s just not going to happen. I can treat symptoms. I can take medication that helps (on some days) with my symptoms. My Provigil, for example, typically helps me get through a regular day. But my reality is now much clearer.

This is it!

Why does this feel like a breakthrough? I thought about this a lot today. I chatted with Cheryl (my therapist) about it, too. As I tried to explain it to her in her slightly too-warm office, it crystallized for me.

It feels like I can stop waiting to feel better and just allow myself the room I need to deal with the worst days. On those days, life requires adjustments. Sometimes major adjustments. Sometimes I might have to say to a client, “Oops…I have to sit down because I’m currently seeing two of you.” Sometimes I won’t be able to get out of the car and walk when I want to and I will just have to drive home and call it a day instead of sitting in a public place crying into my beef stew because my legs don’t work. Sometimes I won’t be able to leave the house at all.

That has to be OK because that is quite simply my new reality. I do have MS and MS does have me, people. That’s just reality and ignoring that reality makes it all so much harder on so many, many levels.

Then there are the days that aren’t so bad. Some days are borderline ok. Today, for instance, was a pretty decent day. I’ve made adjustments as a result of my experience of this disease and I am beginning to understand that this is a requirement, not something that is optional or temporary. My wardrobe. My shower schedule. My daily routine. Nothing is the same as it was, but things could really be a lot worse. (Things might get a lot worse! But for now they haven’t so I’m not going to worry about that yet.)

Not waiting for remission means I can deal with my MS. Or at least start to. I’m not delusional. I can’t go around telling new clients, just yet, that I have a degenerative disease. But I can stop acting like I’m ever going to be able to pretend that this isn’t a fundamental reality of my life. This is my MS. And my MS is part of my life that I can’t ignore.

I was going to go into my rant here about how our broken health care system should really work harder to not make this journey quite so mysterious and painful for the newly diagnosed. I mean, I have a fucking disease. I shouldn’t have to figure it out myself, piecing together random tidbits from web sites and blog posts, when I’m paying highly educated, respected professionals for the benefit of their care and skill. But that just feels like a futile exercise and I think I might be finished with futile exercises for a little while.

For now, I’m going to focus on continuing to work on accepting my MS and not wasting my precious energy that I get from a pill that costs me $10/day waiting for it to go away.

It ain’t going away. And neither am I. Not today anyway.

3 thoughts on “My special little snowflake”

  1. Hope you are able to have a nice Thanksgiving with your family. Your ability to write your blog is a blessing to you and those who read it. Many with any kind of a disease can’t sort it out in their own head enough to articulate it. They also don’t have a therapist to help them plow through. It makes someone who is well hopefully appreciate the simple things such as walking and performing daily tasks. Thinking of you.

  2. Just got to read this one & the newest before this. You’re right about our health care system ~ which is not a system at all! The fact that you’ve only seen your neurologist a total of 40 minutes in a year is rather criminal.
    I once was at a lecture where a psychiatrist & a physician wanted to create a great concept. It would be dealing with the Whole Person & the family/support system for the chronically ill. It sounded great, but it was about 20 years ago. You can see how far from that we’ve gone. A shame! Human beings are worth more. We sometimes treat animals with more respect. I wish it were different. I still pray for change.

Tell me what you think...