Spoiler: I am not an introvert. Nor am I an extrovert. I am somewhere in between. Over the past few decades, I’ve typically found myself leaning more toward the extrovert side.

But lately, I feel like I’ve swung the other direction…

These days, my brain is tired a lot. I thought it was “end of spring quarter” tired in June, from teaching so many back-to-back classes; but I’m still not sleeping well (MS? Perimenopause? Don’t exactly know…) and my executive functioning is definitely diminished.

It used to be that my “bad” brain days were rare, and the majority of my days were good. Now, it’s reversed. I feel like I’m in a heavy brain fog during most of my days… which makes me feel like I’m a terrible conversationalist, and I let my husband take the lead in conversations. (Sometimes, not on purpose; sometimes, it just naturally happens, because I can’t quite keep up anymore.)

And when he’s not around, I often feel like I don’t want to try being social, because I’m not the me that I once was. I can’t keep up. I’m mentally slower.

So, I end up keeping to myself a lot more than I’d like to. I keep trying to challenge my mental agility, but it’s definitely sliding.

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I wrote about this before, how having chronic illness makes me want to do things NOW and not postpone anything in life…

I had yet another realization just a few days ago: as I’m surrounded by people (anyone, really) transitioning to bigger and better jobs, and I work for a university that helps non-traditional students advance themselves in life by finding the career they always wanted… I’m honestly happy for the people who get the job that they want, really.

But that isn’t what I want anymore. Jobs don’t thrill me. Better jobs don’t thrill me.

Yeah, I know what you’re thinking. Everyone would love not to work. Right? But once again, I’m brought back to the urgency of life, and of time, when I have chronic illness, and its constant fatigue, weighing me down.

The better job is just a means to an end. If and when I get them, I’m happy in the sense that they’ll get me more benefits, or more money, or whatever I need to do to eventually stop working. But I’ve been realizing that the work in and of itself no longer excites me… because it just leaves my body and brain exhausted.

Perhaps this is yet another MS whine, but #invisiblesymptom.


Currently, I am on a train between Haifa and Tel Aviv, Israel, while writing this post. (Writing on my phone, too; usually I’m much too old-fashioned for that, and I insist on writing on my laptop. Hooray for my adoption of technology!)

In a few minutes, at least in this time zone, it will be my 45th birthday. Rather than the typical reflection on the past year, I will set a few goals (and you know that stating them publicly holds one more accountable):

1. Aim for monthly meetings with my Spanish language practice group… so I can finally get over that “early intermediate” hump. Good for the ‘ol MS brain, too.
2. Visit at least one more country… I’m in #30 now, and have had many great personal interactions. Looking for suggestions, as always.
3. Now that I can lift again (post wrist injury), increase all lifts by at least 25%.
4. And host a social gathering before the end of the year!

There, that’s plenty of variety, and achievable goals. What do you want to do before your next birthday?


Well… it depends on where you want to go. And, what drugs you’re taking.

If you’re just traveling domestically (as an American), or being whisked away to the confines of a resort, you should have no problem. But my interests have been piqued by more developing regions, recently.

Anyone taking any medication that affects the immune system should have some cause for concern with eating or drinking foods that could possibly be contaminated. When in doubt, drink bottled water!

But perhaps the bigger concern is that those of us who are immune suppressed cannot receive any live vaccines, including the yellow fever vaccine. Based on CDC maps, it was my understanding that a lot of South America was wiped out as a potential travel destination. (For these places, you have to present proof of vaccination when you enter.)

However, I recently had a great consultation with a local travel nurse, who gave me more detailed information on regions of those countries that would be off-limits for me, and regions that were fine (which seemed to be the majority of the country). Furthermore, for each region, there is a “low mosquito season” (which is the vector for yellow fever and other illnesses), and I can further protect myself by donning more protective gear than my peers. (Hey, it’s a pain, but it’s worth it!)

Yes, as I mentioned, there are other illnesses that are transmitted by mosquito, but there is, as of yet, no vaccine: malaria and dengue fever. While I understand the consequences are less than those of yellow fever, I still would rather not be infected, as someone with a compromised immune system.

So, I haven’t yet planned travel to any of these regions (many of them tropical/more equatorial), but I’m happy to know that more of them are accessible to me than I’d imagined. If you are also immune-compromised, I highly recommend having a chat with a travel nurse before making any concrete plans — after all, it would be miserable to buy a non-refundable plane ticket, and then not be able to use it!


neda

22Jul19

An odd acronym, but believe me, it’s something we all strive for: No Evidence of Disease Activity.

Now, I’m not saying that POOF! all the damaged areas in my brain and spinal cord would suddenly be gone once I reach NEDA. Here’s the 4-part definition: no progression of disability in a neurological exam, no new lesions in the MRI, no flareups, and (this one newly added) no reduction in brain volume above and beyond what a typical individual would experience from the aging process.

Now, here’s something personally exciting: as I heard in a Dr. Boster video, the majority of people who’d achieved NEDA for two years then had no further disease activity for seven additional years. That’s a lot! And, as of this September, I will reach my two year mark… which is why I’m so excited, if this is indeed true. (And, I certainly hope that I don’t end up being the exception…)

I am seven years post-diagnosis, which (on average) is quite a while “into” the disease to be at a NEDA phase, based on the anecdotal evidence I’ve seen. Yet with the newer medications to help prevent new disease activity, hopefully more of us can reach that point.


I thought I’d share with the community (of fellow MSers and caregivers) two resources that are accessible simply with an internet connection!

First: one of the best, most honest, well-rounded Youtube channels about MS — Aaron Boster MD. Dr. Boster is an MS specialist in Columbus, Ohio, who started videos a few years back to supplement his visits with his own patients, when he realized that a 30-minute meeting a few times a year wasn’t long enough to answer questions. His channel covers topics ranging from medication side-effects, to coping with brain fog and other symptoms… I could go on. He also does regular livestreams. Please check it out!

Second: one of the most inspiring, uplifting resources out there. The MS Gym is not only a Youtube channel, but also has a Facebook page, an Instagram feed, PDFs… Trevor, the therapist who founded the online gym, has set up routines of mobilizations, stretches, and exercises which allow MS patients of differing ability (whether high-functioning like me, or wheelchair-bound) to slowly regain what they’ve lost. Most of what Trevor has set up is free! and relies on neuroplasticity training… if one nerve pathway is damaged, let’s try to train another one(s) to take over the same/similar function, so that some/all of the movement is regained.

There you have it — two resources that I love, which you can access NOW! Check them out!


So, in less than a month, I have a relatively big birthday coming up… it’s not a “decade”, but I will be 45. Some of my age-peers are tossing around the typical mid-life crisis talk — where they want to be in 10 years, is this what life is all about, why is the sky blue… you know the drill.

What happens when you throw a life-changing chronic illness into the mix? For me, it amplifies the effect a bazillion-fold.

Not only do I start questioning what I want to do with the “second half” (ugh) of my life, but there’s a lot greater urgency: what if MS throws me a curveball and leaves me disabled in a year? Tomorrow? Will what I do in the coming year matter? What about in the next few hours? And all those “bucket list” things I’ve always wanted to do, suddenly becoming seriously urgent.

All in all, it’s making me a nutcase. Difficult. Neurotic. Others can’t relate to me. I can’t relate to others.

Unfortunately, I don’t have a solution I’ve been working on meditation and mindfulness — “enjoying the moment” — but that doesn’t remove the nagging feeling, that persistent voice telling me that my life, as I know it, probably truly is short, and I gotta get my stuff together.