How I Stopped Believing What I Think

This values compass journey took an interesting turn when I realized I was late. Not only was I late with writing this post, and felt guilty about it, but my work was late, I was late. What felt like all the time. To my coffee meet up with my friend, to work, getting home from work, to an appointment, to drop Maddy off at school. 

“What is wrong with me?” I would ask myself in my head. “Well, you have MS for one…” I noticed myself answer. 

I’m, not sure that giving myself grace was always this automatic for me. Nope, it wasn’t for sure. Even as I am writing this I can hear my thoughts tell me, “you didn’t always do that.” 

That’s true. I wanted to always do that. When I think about it logically, I can do that. 

Often, the “shoulds” would creep in, and write a whole script of how I should be able to do it all. 

I particularly noticed how I give grace to others more in my work as a therapist. Not a day goes by that I am not noticing other’s unreasonable expectations of themselves. When I hear that, it’s almost like an alarm goes off that encourages me to help them challenge these thoughts. 

“You can’t always believe what you think.” haha. My dad said that to me sometime ago. I think I was in high school. 

At the time, it sounded crazy to me. If I can’t believe that I think, what am I supposed to believe? The internet… 

I’m not sure if he was trying to be funny, or incredibly insightful at the time, but I know for sure that it has been helpful to me now. 

“You should have gotten that done sooner.” ← I don’t have to believe that. Instead, I am going to choose to believe that anyone that has put time and effort into reading, or listening to my blog will forgive me and understand why this post is so late. 

Over the last year and a half, I have learned about the kinds of curveballs MS can throw at me. Still, the most recent one I have been experiencing came as a surprise.  

In May, I transitioned to a new medication, because I had lesions that were breaking through with the other medications. Then, around the time I “celebrated” my MSiversary, I started having what I thought was a new set of MS symptoms. 

On Friday, I will have another MRI to confirm if there are new lesions since the medication change. This is nerveracking (haha literally I suppose… accidental pun intended) and I’m a little afraid of what might happen. 

Either, I have lesions, meaning this very expensive and intense medication (which until recently I thought was the most intense without radiation / chemo) OR, I have these symptoms, and there is not evidence on the MRI, indicating there may be another cause. (to read another would you rather story, click here)

Let’s be real: neither of these are good. It’s another would you rather game I don’t want to play. Would you rather consider chemo or be diagnosed with a second chronic illness? Short answer… nope. 

While all of this was happening, both my neurologist and PCP had told me they were leaving. Which meant I needed to find a whole new medical team, and when I was going through this scary time, they were suffering from Senioritis, meaning they were not as… attentive as I would have liked. 

This is also when I learned how challenging it is to have a chronic illness, because the specialists I need to see are months out. The appointments are scheduled… but I still haven’t technically established care. 

November feels painfully far away still. 

This led to me leaning on a unique source for validation and medical information. Good ol’ Gemini, my AI confidant, who I now affectionately call “Dr. G.” 

My conversations with Dr. G resulted in a “fake” diagnosis of POTS. My symptoms appear to be a sign that my body is having a hard time regulating my pulse and blood pressure. Often resulting in a racing pulse, sometimes in conjunction with a high blood pressure, or a dangerously low blood pressure. 

I had brought this issue up with both my old PCP, and my neurologist, and neither of them seemed concerned. One told me “I’m not a cardiologist, I only take your blood pressure because they make me.” The other suggesting “just sit for 5 minutes,” when I told him the blood pressure cuff literally couldn’t get a reading.

Needless to say, I did not appreciate either of these responses to my concerns. 

I found out over the weekend that the stars around a cartoon’s head when they pass out are not just for show. 

It happened to me. [I did not lose consciousness, I had what Jared calls “near-syncope”] 

During this event, I had just finished brushing my teeth, and walked back to my bed… you know… crazy strenuous things. 

I felt like my heart was racing, so I decided to take my blood pressure. My goal is to have a lot of data for when I do get to see a neurologist and a cardiologist. Then it happened. 

Everything went black, which happens a lot when I move from sitting to standing, but had never happened like this before. 

Then, blacker… it’s hard to explain unless you’ve experienced it. My eyes were closed, so how could it get blacker? I don’t know, but that’s usually when I choose to sit down. 

This time, I naively chose to tough it out. Turns out, that’s not a thing. That’s when the blacker than black vision with my eyes closed became sparkly, and my body felt heavier. 

How I thought to find the edge of the bed I was standing next to so I could sit down, I’m not sure, but I am glad I did. 

Things got better, pretty quickly, and continued to improve. After about 5 minutes I was feeling much better, and I could see again. 

Most of the time it’s not that bad. 

Other than watching my blood pressure and pulse do frightening things, my legs turn purple when I stand too long. 

How long is too long? You might ask. Well, I don’t have an exact number, but I can say a shower is long enough. Not even a warm shower, I take pretty cold ones these days because warm showers make my symptoms increase. 

I can tell when my circulation is not great in other ways too. My fingers, toes, and even my nose get very cold. Fingers are the worst. It makes it hard to do anything. Typing, writing, driving, holding things… it’s all hard. Not only are they cold, but they start to get numb as well, just to make things harder. 

Even Dr. G. confirmed that managing all of this is complicated. 

POTS feels worse in the morning, or if I’m in a position other than laying for more than about 20-30 minutes. MS gets worse throughout the day, particularly hard at the end of the day. 

The things that can be helpful for POTS, I have been trying to do, and a lot of them are limited by either not having a person to prescribe me medications, or because MS makes them worse or not effective. 

All of this happening, all day every day, makes functioning as a “normal” person pretty hard.

So, I have been using my experience with helping others challenge negative thinking to challenge my own. 

I ask myself, as I have asked my clients throughout the years, “Is it true?” And “Is it helpful?”

A lot of the time the thoughts of “shoulds” I have are true, or at least I wish they could be… but they were almost never helpful. I think this is where grace gently flows in. 

Trying to make sense of why things may have gone the way they did, and allowing reality to just be, helped me to forgive myself. I have also learned to lower my expectations. 

Sometimes, all I feel able to do is get out of bed, and make it to the couch. It’s not what I want to be true, and it’s also okay. I have learned that allowing myself to accept that was how it was today, does not mean that is what will happen tomorrow. 

In writing this, I have realized that recently giving my medical team grace is one of the largest challenges I face. The truth is, I don’t want to lower my expectations for them. Although I recognize I have unrealistic expectations, it feels scary to lower them. 

I want them to have answers they just don’t have. Life would be easier without chronic ailments. For me POTS and MS are the biggest hurdles I can see. Giving my doctors grace for not having the answers that would remove these hurdles, does not mean they will stop trying. 

In the same way that giving myself grace for always being late doesn’t mean I give up. Every day is a new day, and today’s mistakes and mishaps can be a roadmap of information for tomorrow. 

Maybe we aren’t supposed to win the race on the first try. So, I’ll leave you with a question: what are the “shoulds” that exist in your life that you would like to practice healing with grace?

Other posts to check out – My Daily Dilemma (more about different “would you rather”)

If you check out the Values Compass page you can see other reflections about values, and you can visit the values worksheets page to start your own values journey!

My next value to explore is uniqueness! Stay tuned for the next fun adventure!