Quarterly Gratitudes from an MSer: December 2015 edition

First of all, I'm grateful you are all reading this since I have not posted at this blog since September 1. One of my goals for 2015 is to get into a regular pattern with the CraterBrain blog again. More on that later. 

Second, I'm happy to wish everyone a fabulous holiday season!

Third, I'm gonna get right to it because it's redundant to start a list with a list, no? 

Just one of many
great resources

1. Gratitude always goes to my online MS cohorts who are true champions for the cause. A lot of people with MS barely understand the disease, but there are some bright lights in the mix who know how to interpret the research, know how to differentiate snake oil from real science, know how to share their experiences and help others in a way that is not at all self-serving, but rather a gift to so many others who are still finding their way in the MS wilderness. I'm talking especially about you DK, and SS, and AG. 

2. I attended an MS "road show" this fall that was inspiring on multiple levels. I learned a bit more about things like lesion load and was able to get to the bottom of some unfounded rumors about the main disease modifying therapy I'm on. I almost didn't go to this event but am so glad I did now. 


3. We bought ourselves a really nice RV over the fall that we have already used twice and I'm making plans to use it regularly in 2015. The long-distance traveling by plane is really becoming less and less of an option... I really don't tolerate the experience well anymore and dread the possibility of flying in the future. It takes too much energy, it is overstimulating and fatigues me, I always get overheated, and the unpredictability of flight travel just adds to the stress bomb. I need a vacation once I get home because of it. Not so much with the RV; we live in a part of the world when I can go just one hour from home and feel like I am halfway across the continent. The simplicity, the comfort, the fresh air... my kind of vacay!

4. A repeat from my last two gratitude check ins: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them. I had to drop them briefly, twice, to get carpal tunnel surgery, and it was made obvious by their absence that my body needs them to operate at maximum. 

5. I've had two carpal tunnel surgeries. The first, in September, took longer to heal than I expected but the numbness is gone. I'm recovering from my second (operation was just last week) more quickly this time, and will be glad to get back to things like yoga again, which probably won't happen until January as I won't be able to put weight on my recovering wrist for a few weeks yet. Still, glad to have a great surgeon, and the hospital system I am a part of was pure excellence.

6. I'm grateful for more time for reading than I've had in the past. Deeply involved in an epic novel by Ann Rice right now. Hoping for more of this in 2015. It feels good to be able to read and not struggle with migraines or weird cognitive hiccups that make it difficult to comprehend.

7. Grateful for nary a symptom, most days. When I was first diagnosed, I kept a daily journal that filled two or more pages with details of symptoms and side effects. Now, I might have 1 or 2 slight symptoms a week, not even worth cracking the journal for. I live in constant amazement of this reality and do treasure my sense of "normalcy" now, as it so much resembles my "normal" life before diagnosis.

8. A key symptom of multiple sclerosis is something called an "MS hug." This is a deep cinching feeling at the torso which makes it difficult to breathe without great pain. I have not experienced this as an adult, that I'm aware of... but when someone described this experience recently, I realized it was something I used to have when I was a kid, age 10 or 11. It's funny how you have certain physical sensations and just think that is "normal." Certainly, nobody raised an eyebrow when I complained about this vice-like grip around my ribcage and the inability to take a deep breath when I was a kid. I remember my mom, or maybe it was my grandmother, telling me I had a touch of "the pleurisy." What I'm grateful for, here, is the fact that somebody online took the time to accurately characterize the sensation so that I could relate to an experience I had which had been previously lost in memory. And also grateful, weirdly, to realize I've probably had MS to some degree for nearly 40 years. This means that my disease progression is on a very slow course, and that, indeed, is very good news.

Tesla 3 MRI: Extra roomy!!! 

9. I am still so happy for the kind of care I receive from my doctors. My primary care physician is amazing. I went in for concerns about pulsate tinnitus, which may be symptomatic of intracranial hypertension (which we have not yet ruled out as a separate condition). The sensation was so extreme that the doc sent me in for a Tesla 3 MRI to take a look at my cranial arteries to rule out aneurysm. Gratitude part A: no aneurysm! Gratitude part B: having a Tesla 3 MRI and learning that MRIs were first developed as a technology to help diagnose MS, specifically. 

10. Finally, I'm glad for the end of 2014. For me, it was mostly a great year, but I know that it has been hell for many of my closer friends. I want 2015 to be a year of mindfulness, creativity and restoration, not only for me, but for them. I would love to be able to pay it forward for all the wonderful people who have helped me along these last couple of years. 

What's on my mind besides scar tissue... dealing with crowds on Super Bowl Sunday

Just posted this in a closed Facebook group, but wanted to share here. 

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"Just sent my family a love note in email asking them to check out some links on brain fog, noise sensitivity and mental fatigue. They just don't seem to get it when I tell them in person.

PS I have an 18 year old daughter who has no interest in driving. This is especially problematic for me given her work and activity schedule. I have had to put my foot down and tell her she needs to take that responsibility on herself, because I don't have the energy or time and it's something important for her to learn and would be a major way she could contribute to the family. 

Imagine all the quick errands she could run for us when she is around--"please pick up your sister from dance," "please go to the store and get some milk," "please drive yourself to nighttime polo practice so I can put my pajamas on and go to bed early." 

However, my husband spoils her and drives her everywhere... so when he's not around, and I shake my head and say "sorry, not gonna do it," I end up being the bad guy. 

This is perhaps one of the bigger problems I have with MS, convincing my family that it's real and that they can either help me or hinder me based on the choices they make as well. Very frustrating."

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This is one of the harder things to manage when you get diagnosed with an illness which bedevils you with mostly unseen or invisible symptoms. People around you forget you have it, or they don't stop and think, hmmm, maybe she's acting like that because of her condition, or they just look at you like you're crazy. 

You can tell your family all kinds of things about MS. And sometimes they will listen and understand and be receptive, and sometimes they will put out a signal that says, "you know what? I don't want to know more, because it means that you are possibly getting sicker and I can't deal with that." 

Here are the topics of my email below with the links I passed along, which I'm posting in hopes they will help somebody else out by either illustrating the cognitive realities of MS or giving them the tools to explain or express their challenges in these areas. I'm open to hearing others share their stories about getting through this sensitive relationship issue related to MS, as well.

1. Brain fog describes a slowness in processing memory, language, external stimuli, new learning, even emotions.

LINK: 

• Basic explanation || What is brain fog or "cog fog"?

2. Noise sensitivity is just that: one low decibel sound is fine, but a buttload of sounds all at once? AWFUL. My brain can't make sense of any of anything when I hit a saturation point. I cease to be able to hear (or see) sounds in a way that registers comprehension. It's like the spinning hourglass on my computer is now spinning right before my eyes, but others around me don't get the benefit of a "please stand by" message. (In my case, I can also have visual sensitivity--too many bright lights, imagery, motion added to all the noise is pretty much going to mean I need to go hide somewhere for a while.)

LINKS:
• Some explanations re: noise intolerance || http://ms.about.com/b/2010/12/14/q-are-you-noise-intolerant.htm 

• MS Blogger Matt Cavalo's experience w/noise intolerance || http://www.mattsms.com/2013/02/noise-sensitivity-stress-frustration.html

• Forum answer on question about MS and overstimulation || http://www.msconnection.org/Discussions?forumid=25&threadid=34895

3. Mental fatigue happens when there is just too much to process... it is the outcome of sensory overstimulation as described above. When mental fatigue hits, it's because I've used up all the energy in my brain in the act of trying to process everything, and now ALL SYSTEMS are slower or even stopped. So if I've just been to the grocery store, and it was crowded, that's almost certainly going to lead to a nap, which is the only way the brain can restore its fuel. However, if I just went for a 5-mile walk out on a hiking trail, I'll be energized because I wasn't bombarded by frenetic noise and visuals, I wasn't trying to think so hard while walking. That's what makes it different from physical fatigue. And it's not about being sleepy. That's caused by a shortcoming in my wakefulness drive, not because of mental fatigue. I just tend to need to sleep to recharge my brain when it's been overloaded. (And ditto when I have a migraine and don't have access to my Fioricet.) 

LINK:

• Mental fatigue basics || http://www.dummies.com/how-to/content/understanding-how-multiple-sclerosis-can-affect-yo.html

4. Planning ahead when crowds, noise and overstimulation are likely is another way that both and MSer and his or her family can be proactive so that the MSer can better cope when necessary. I am anticipating a trip to Hawaii this spring and hope my family will see that my goal is to CHILL at every opportunity. And if they want to do the high-stimulation thing, they are welcome to, but they should not be angry or disappointed with me if I beg off and choose to lounge in the shade and read a book instead. Nothing personal!

LINK: 

• One MSer's encounter with Disneyland, or how to take the stress out of family vacations || http://www.healthcentral.com/multiple-sclerosis/c/73302/66804/mickey/ 

PS... I do plan to go to a very noisy Super Bowl event this afternoon, and I'm wearing comfortable clothes and have already located a place to take a quick nap or duck out of the mayhem if necessary! I'll also have my migraine meds with me and modafinil for wakefulness is already in my system working its charms. I'll also avoid obvious energy busters like high fat and high sugar and stick to iced tea and water with lemon to stay hydrated and slightly caffeinated. 

5. Occupational therapy can help to alleviate these problems. MSers and their families need to know there are some helps out there that are covered by insurance and can really offer some relief. Also, I'm wagering that if my family realizes there are entire medical professions set up to help me out with these symptoms, then they'll perhaps realize how much this isn't "all in my head," but real, and treatable, like any other illness or injury. 

LINK: 

• Cleveland Clinic occupational therapy offerings || http://my.clevelandclinic.org/neurological_institute/mellen-center-multiple-sclerosis/treatment-services/hic-occupational-therapy-at-the-mellen-center.asp

Hey, I have to say, my family is better than most. I know they know I am sick and that these are part of the problem, they just tend to forget because my symptoms are not always obvious to them. I know families who think it truly is all in their loved one's head, that they are either weak or lazy or faking or just trying to get out of responsibilities. What a horrible way to treat someone with a chronic illness for which there is no cure! So I still give my family a big thumbs up for at least trying, and for the fact that I can send them an email with these links optimistically, knowing they will have their own powwow one night while I'm at work and reach some sort of accord.