About this series: I spent about a year wrapping my mind around a new diagnosis of Multiple Sclerosis. I have decided to basically cut and paste everything I wrote down while I was processing it all. Perhaps one other person who is going through uncertain waters will find comfort and peace through my sharing. This post is a raw copy of my string of thoughts as I wrote them down. I did not try to outline them or edit them because I wanted to demonstrate what a person might be thinking of during these kinds of times.
"Straight From My Journal" series
A little background: I had been to see another doctor for a second opinion because my first one had just basically told me to “call us if you have any further problems.” After researching a lot, I realized I really should be taking medication to help ward off future relapses/disability. I was very resistant to starting such a heavy-duty, scary (and expensive) medication…
To read “TODAY” part 1, click here.
(5/12/2023) I feel better about the fact that I went to another doctor who is not going to sit on their hands. I absolutely hate the idea of taking medicine, but he said, of the people who choose not to, only 10 percent of them do not have any further problems. So I guess this basically means I have to accept this and take the medication. If a weatherman tells you a tornado is coming, but you only see light clouds, you still take precautions, or you are an idiot. I am nervous about the potential side effects, but it is better than having a nasty relapse.
I don’t want to have this (MS) be the only thing on my mind, but I admit I sure have been thinking a lot about it. I suppose that is “normal” and OK, as long as I don’t let it pull me into a vortex of helplessness, self-centeredness, negativity, whining, or self-pity. I suppose, though, that it is good to stop and accept and wrap my mind around this as a reality. Sometimes I feel optimistic, like YEAH, we got this!!! But I also “only” have sensory symptoms so far. They do bother me, quite a bit sometimes, but I am still able to think, do things, have energy, take care of myself, go the the bathroom, be with my husband, play piano, do art, work at the pregnancy center, take care of my family….So many things/too many to list—all the things! 🙂
But, once in a while, the reality of the possibilities creeps in, and I realize that, at any time, something bad can happen, and things can be taken away from me. I’ve read that this can be a cruel, nasty disease. (But modern medications are making it less and less serious for many people.) I feel like I have this quiet idea in the back of my head that “nothing’s gonna happen to me.” I’ll just work hard and fight it.
But, I am aware that I am not a super human, above everyone else. When your circuits don’t work, they don’t work. You cannot will it to not happen,and you may be helpless once in a while, or even forever!
Man, that is so scary!
But I try to say in those times: OK, true. It can happen. But now, what can you do TODAY? Do that. And be grateful and choose joy.
When I say “Be grateful and choose joy,” sometimes I’m like, “Well, that’s nice for today, but what about if I wake up one morning and can’t walk? Then what? Will I stop being grateful then? What good is joy and gratefulness if you are not thankful to God during the hard times?”
And then I waver, thinking I am being a hypocrite for that. (It is kind of like what I do when I am starting a new good habit–yeah, I’m exercising now, hurray for me, but what about when I slack off tomorrow?)
This sort of thinking derails me from choosing the right actions, thoughts, and attitudes now, today. I am going to have to recognize this and remind myself and CHOOSE to realize that I am only doing TODAY, right NOW. And those choices I make today could actually help to strengthen and equip future me when she does wake up to a trial. She will already have been working on the automatic response of gratefulness to God for today.
What if it all comes unglued? What if I fall apart emotionally and spiritually? I DON”T KNOW! But I can only do today. It’s like what Dory said (in Finding Nemo):
“How do you know something bad isn’t gonna happen? I DON’T!”
So I guess it is ok that I am taking some time to wrap my mind around all of this. I tend to downplay things–tell myself that I’m being over dramatic–when I allow myself to think about the “feelings” around this diagnosis because, so far, my symptoms have not been as scary as they could be. It’s like (from Monty Python) “It’s just a flesh wound!” Unless you have blood gushing all over, you’ll be fine.
But obviously it is on my mind, and I need to address it. I don’t want to be all self-focused and also talk about it for hours to bore people to death, so I am taking these times I have alone to sort of sort it all out, here on the porch as I write this.
I imagine it is normal to go through some of these “stages” of getting accustomed to something like this. It is just that, right now, I don’t have a ton of serious issues–I don’t want to fold in on myself and do a bunch of “self care.” Like, if I’m tired, I don’t want to swoon and blame it on MS so I have an out when I don’t want to do anything. I don’t want to whine and complain.
But, yeah, the truth is, it sometimes is uncomfortable to have this paresthesia on my arms, hands, legs, feet, and torso. So, because I don’t have any really serious issues, I feel like I shouldn’t be a drama queen and swoon and complain. But, truth be told, it is very scary to think that someday, any day, at any moment, something could happen.
I suppose this is all very “normal”. I have noticed that I fluctuate between feeling optimistic, hopeful, and strong==AND==scared, kinda down, and a little less strong. I feel like I am a person who could easily fall into melancholy, so I know that I need to keep my thoughts in check.
I don’t think it means to pretend everything will be fine, because I don’t really know if it will all be fine. I think it means to acknowledge the feelings, emotions, and thoughts. And then ACT according to what you know you should do, not according to your fleeting emotions.
It is possible that things may never get as bad as I fear. Do I want to have lived my life in fear, swooning, and emotional helplessness, then it turns out that I never have had to even face the bad thing I was afraid of?
And I would have lost all those years where I could have been living life fully?
Go to the Picnic Even If They Say It’s Gonna Rain
A Long Time Ago, in a Land Far, Far, Away, my husband and I had plans for a picnic at Starved Rock (a beautiful state park) when we were first dating. It was supposed to storm all day.
We went, anyway.
And I made the most impractical thing in the world to bring–transported in a cooler– to a rainy picnic–I made a fruit pizza!? 😂
And you know what? It did rain! It poured! It thundered, and there was lightning. And my fruit pizza was all soggy because of condensation and humidity.
But we went, anyway.
We ate our picnic lunch and our soggy fruit pizza (I remember the taste to this day) under the picnic shelter as it poured. And then we went on a muddy hike and had to hide under a large rocky overhang when it began to pour again.
But we went, anyway.
And I will never forget how fun that trip was. And, because it was raining, there were very few people on the trails, so we got to steal a few kisses out there in the woods under the rock overhang.
So, even if there is a rainy day predicted, make your impractical fruit pizza and go anyway! Live your life with joy TODAY and don’t stress over what might happen tomorrow.
Well, here we go…