Click play to listen to a deep dive podcast – like overview of this story. This summary is AI generated, and some elements may be not be accurate. –>
My mom always said, “I need more spoons,” I think now I get it.
I had my one year appointment with my neurologist today. I have not been so sure about my neurologist, to be frank. There was a lot of positives he had, especially the logistical “admin” type aspects of MS he seemed to effortlessly manage for me.
That might not sound like that big of a deal, but I have valued it enough to look past some of the bedside manner deficits I have experienced.
In the last year, I started a medication that needed to be mailed to my home because there were no pharmacies that would manage it. I was also set up with an RN nurse care manager that would call me to chat about how things were going, and a copay card. All of these things were set up for me, and were FREE.
I’m not sure I realized at the time how beneficial this was, or how easy it usually isn’t.
Then, when I continued to get new lesions, and my disease continued to progress with this medication, I thought I was going to have to convince him I needed to “upgrade” my treatment.
Turns out, I didn’t have to convince him. Although I still have never heard him specifically make a recommendation directly to me, he said that usually in situations “like mine,” he would suggest changing to a more aggressive medication.
Also, because there really was only one more step up, there wasn’t a lot of negotiation that needed to happen.
I was pretty worried about this step at first, but he stepped in again and managed all the steps. He talked with my insurance to get it covered, I had a new RN from the pharmaceutical company to tell me about MS and the medication, a new copay card, and a referral to an infusion center.
This was not any regular infusion center. It was downright bougie. Read more of the story here. I had a private room, netflix, and they even bought me food.
I still had thoughts of breaking up with my neurologist. It never felt like he was directly talking to me as a patient. More like we were consulting about me.
The more I thought about it, the less I wanted to go through this process… His office was right down the street from my house, he did seem to know his stuff medically, and the admin support was really like a weight that was lifted off my very tired shoulders.
“That’s not MS,” came to be one of my least favorite things he told me. My husband, bless him, became like a translator in the car after appointments. “It is MS,” he’d clarify. “He’s saying that there’s nothing he can do to treat it.” Yeah. Okay, I guess.
Then I would go to my primary care doctor, explain the same symptom, and get told, “that sounds like MS, I would recommend talking with your neurologist.”
It was exhausting to be bounced around between doctors like a hot potato.
“They just don’t know what to do,” my husband would tell me. Which, I knew was true, but it just upset me more. “Isn’t it their job?! Why the hell not!? Who does?!”
I used to have so much patience for people, including professionals. Recently, it has felt I don’t know how to give them space. Either that, or I don’t trust that the space is going to lead to changes, which is really what I wanted.
Logically, I knew that there was not a cure for MS. Regardless of what they said, or didn’t in my case, it wasn’t going anywhere. Dang it.
Going into this appointment today, I had a few goals. One of which was to ask him about a new PCP, because mine had just told me he was leaving.
That’s the second one since my MS diagnosis. I felt like the “Good Luck Chuck” for doctors. Okay… I know it actually has nothing to do with me, but I was also tired of having to find a new doctor, tell the story, hear the same “I don’t really treat MS,” hooplah…
So, when I asked him if he had a recommendation for a new PCP, his eyes avoided mine. “I wasn’t going to tell you about this right away…”
Yup… He’s leaving too.
I’m not sure what the “right” response to those words is, but I’m getting the feeling the one I have might not be it.
More or less I tell them I’m happy for them, and I understand, and ask who they would recommend to take over my care. Their reaction to my response makes me wonder if they are expecting (or used to) a more emotional response?
“Hmm… okay then. Well…”
After leaving today, I need to find a new neurologist, move my next infusion up a little bit so I can meet with him one last time, get another PCP (still), and I have been considering also getting a new therapist.
Ugh. I’m exhausted thinking about it. “I kinda just want to cry,” I told my husband when we left.
“I know. I can tell.”
It wasn’t because I felt he was the best doctor in the world… I just need more spoons.
Spoon Theory is widely used now to describe the limited energy reserves that people with chronic illness experience every day. Each spoon represents a “unit” of physical or mental energy that can be used to complete a task.
This theory, first described by Christine Miserandino, has been used to help describe the limited amount of energy that often exists when we are experiencing chronic conditions, disabilities, and care giving roles.
Often, this analogy can be used to explain the often unseen burden of difficult choices to ration the few spoons we wake up with in the morning.
So, I need more spoons. That’s what I have decided.
As often happens for me when I am going through my experiences, and sitting down to write them, I am reminded of a seemingly unrelated story from my past.
“I need more spoons.” I feel like I can still hear my mom say it.
My brother and I were early elementary school aged kids, and I’m sure we would tell my mom we didn’t know what happened to all the spoons. Then, we would go to the sand box and find them.
They were great shovels, honestly. We used to have so much fun making a tiny town in that sand box. The spoons were the perfect size for our small hands, and for the roads and rivers that needed meticulous digging to make them “just right.”
We were very particular little civil engineers. We even added trees to our towns, and water when mom would let us.
I know now that the “tress” were actually cat poop, which is pretty gross to think about, but I didn’t know or care at the time.
Not only did I like using the spoons better than shovels because they felt easier, but also because my brother did not use the spoons as weapons. There is a memory burned into my mind of him using a shovel to cut a worm in half. I’m sure you can imagine the scream little me let out when he did it.
And, if you have a brother (or any sibling really), you can probably also imagine how that was clearly his cue to stop tormenting me. Right?!
No? Your’s didn’t stop either… hmm. Yeah. He kept cutting the worm in half until it was a vibrating mush of worm stew on the wood “cutting board,” edge of the sand box.
The good thing about spoons? They were not great weapons, and they made windy roads pretty well too.
Now, I need more spoons for different things.
Much more boring things, like loading the dishwasher, trips to the pharmacy, taking a shower, or finishing my work notes. Not building a city, unfortunately.
I guess, today I learned I need spoons to be used to find new doctors. Maybe if I am the “Good Luck Chuck” of doctors, maybe they will start to come to me instead of me having to give them my spoons.
If you’re looking for other posts to listen to or read, consider my reflections after my one year MS-aversary. From Bar Frights to Bathroom Stalls, or The Digital Mirror.
