Enough

Enough

Enough (noun)
occurring in such quantity, quality, or scope as to fully meet demands, needs, or expectations

This week was a marathon in not feeling like enough. I’m trying to figure out at what point in life do we a) know we are enough or b) it just doesn’t matter anymore?

I wish I could feel like either on any given day, but then I wonder if it’s tied to always wanting to do my best whether professionally or personally. And to this day it feels like so many others I know are more than enough.

Most days it is relatively easy to look beyond the mess and imperfections, but in the blink of a moment, something can cross your path in the course of a day, and a 180 happens, and it’s more than enough to feel like enough.

One of the things I often remind myself, that even in the throes of the worst MS flare-ups I’ve had, I have been more than enough, and more than most who don’t have my respective burden. But sometimes, even that isn’t enough.

So when exactly are we enough?

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Fear

Fear

Fear (noun)
an unpleasant often strong emotion caused by anticipation or awareness of danger

There is so much to fear on a daily basis, it’s a wonder most of us can leave the house on a daily basis.

There are the types of fear that seem to lurk in the background, like dark spaces, spiders, snakes (both do I loathe the latter two!), and other things that go bump in the night.

Then there is the fear of speaking in front of people or going on a stage or singing in front of people. It’s interesting to me that when I speak with people who act or sing regularly about their ability to make themselves so vulnerable, I’m often met with responses that suggest low or lack of self esteem, which seems like such a dichotomy. How can a person willingly make themselves to vulnerable, and yet fear that very act of vulnerability at the same time.

The fear of losing loved ones and close friends, from long drawn out diseases, to sudden deaths, or just old age. The fear of going on without these people in your life.

We are moving into one of my favorite seasons, fall, although winter is my very favorite-est. And with that comes the fear of having a flare-up and living with a progressive, neurological disease can play tricks on your mind. The anxiety can help drive that fear. Different treatments like CBD or anti-depressants/anti-anxieties can help, as can exercising. Fortunately I’ve found a combination that works for me. It doesn’t stop fear from creeping in at highly inconvenient times, it just means that when it does, I have the tools and resources to help my brain realize that it is playing tricks on me.

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Afflicted

Afflicted

Afflict (verb)
(of a problem or illness) cause pain or suffering to; affect or trouble

Women being diagnosed with hysteria as a result of mental illnesses didn’t disappear from the Diagnostic And Statistical Manual of Mental Disorders (DSM) until – 1980! Yes, 1980. Hysteria was basically the medical explanation for everything that men found mysterious or unmanageable in women. And it continues to be a synonym for over-emotional or deranged behavior.

Some of you may be familiar with the new Netflix series Afflicted. I first came across it on Twitter the week before last as it was getting panned by the chronically ill community, including one of the people who took part in the “docuseries” who is living with an extreme form of myalgic encephalomyelitis (ME). ME often starts as a result of trauma, like a car accident. Some interchange it with chronic fatigue syndrome, but it is more severe, often leaving people bed ridden for months and years.

I’m assuming these people were approached by the producers who said it would help to raise awareness of these diseases that could be considered “all in your head.” While I haven’t finished watching it yet, I fall somewhere in the middle that a few may indeed be in their head, but others for sure in their body. Either way, people need genuine help. I remember having someone fairly close to me say, “it’s almost like you’re trying to find something wrong.” No, I KNEW something was wrong, and it was actually typically wrong for MS (weakness & numbness).

As someone living with multiple sclerosis a chronic (and sometimes acute) disease, I can appreciate how people “just want to feel better.” On the other hand, it’s also hard to see these people spending millions of dollars on avenues that lack scientific research. But you also can’t win in these situations, because people tell you to do “something,” but then when you do, it’s wrong unless it’s Western medicine. And since these diseases and disorders are so new, what Western medicine should it be? I do question why some of the people featured have turned down mental health support, especially given the whole mind/body connection.

Just like with hysteria in the last century, we have moved into a time of unknown illnesses. There is no doubt we are all exposed to more environmental factors, than even I was as a child 40 years ago. The show talks about electromagnetic sensitivity, as I look around my apartment to see: two laptops, a monitor, two TVs, wifi, cable modem, wifi speaker, and a mobile phone, it does make me wonder for a moment if the electric impulses I feel MANY times per day due to the paresthesia aren’t enhanced by all of the devices I have in a small space. Keep calm, carry on.

Several people in the series suffer from multiple chemical sensitivity. And around 25% of the general population reports essentially being allergic to life. All of the perfumes, mold, scents, cigarette smoke, animal dander, oils, gas, etc. can be classified as MCS. Those migraines you’re getting, asthma, allergies, sinus infections, strep, and the list goes on, could be classified as MCS depending on what you are exposed to on a daily basis. And we are also just delving into the gut microbiome in research, which is more and more starting to be attributed to the uptick of autoimmune diseases (and pointing towards the overuse of antibiotics). Also keep in mind that the better diagnostics get and the longer people live, the more likely there are to be diseases we’ve not yet heard of, just like a lot of cancers or cardiovascular diseases 40 short years ago.

As if having multiple sclerosis isn’t enough, I’ve also had allergy induced asthma for 45 years. Although the asthma is controlled by avoiding animals, the allergy/sensitivities to scents has grown exponentially since the MS. People always say, well try organic, but what most people don’t understand is there is no such thing as completely unscented. Organic doesn’t mean unscented, since herbs also have scents, and for me it doesn’t make a difference between the two, a scent is a scent. But ironically, the allergies bother me less in the city where the trees are fewer, than in the suburbs or country. Perhaps my immune system has adjusted to city life better. And also my heat intolerance has grown over time. I live in an apartmentcicle. And wherever I go, if it’s not freezing cold, I for sure have symptoms or pseudo-exacerbations, and while cooling down helps them go away, I often wonder what damage is happening in the process all during the hot months.

I felt compelled to do this post, as a result of this series, to say, while from the outside you might think an issue is “all in someone’s head,” it doesn’t make it any less of a health issue. And as a family member, friend, partner, child, as frustrated as you are, imagine feeling like shit 24/7 and not having anything to make you feel even a little better? So the next time someone turns the thermostat to meat locker temps, put on warmer clothes and be happy to spend time with them.

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Gratitude

Gratitude

Gratitude (noun)
the quality of being thankful; readiness to show appreciation for and to return kindness

Tonite was a typical summer evening in NYC, aka hot & sticky. I had planned to attend a great concert, but wasn’t sure my body would hold up to being outside in the humidity, and while it’s not pleasant, I haven’t been giving my body enough credit lately. To set the stage for just how humid it’s been? I have pretty much straight hair and even I’m sporting a top knot these days because my hair is going “poof” the minute I’m outside. So, yes, it’s HUMID. So done with summer!

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I pushed myself to go and was so glad I did. For most of the show the humidity went away a bit and I got to enjoy it. And then when it did come back again, by that point my body was acclimated and I was able to get up and dance for the remainder of the time.

Looking around at the crowd and the NYC skyline and the audience enjoying the music, a wave of gratitude came over me. I’m grateful to have wonderful family and friends in my life. People who both cheer me on and tell it like it is.

I’m grateful that I feel healthier than I have since the diagnosis nine years ago (and 10 this month since symptom onset). I’m grateful to have access to medicine, fitness, and doctors that are part of keeping me healthy (I wish everyone did, but a topic for another time). I’m grateful that I have a body that I’m feeling a little less like its betrayed me or I’ve betrayed it.

I’m grateful to live in a city that cares about protecting everyone, warts and all. And I’m grateful to be in a position to give back to my community and organizations that need it, especially in the current political climate (literally).

Keep on keeping’ on…

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Anxiety

Anxiety-600X600

 

Anxiety (noun)
a feeling of worry, nervousness, or unease, typically about an imminent event or something with an uncertain outcome

Today started out with loads of things on my to do list in advance of leaving for a business / personal trip tomorrow morning. Anxiety had different ideas for what my day would turn into. Anxiety doesn’t give you a reason, it doesn’t make sense, and it’s super inconvenient. Kind of like a drunk uncle at Thanksgiving that everyone just wants to send home, but you can’t quite bring yourself to say see ya later, bye.

It’s probably been years since I’ve had this type of feeling. It wasn’t that kind of anxiety you feel before a talk, performance, or seeing someone you haven’t seen in a long time. It’s the type of dread, and argument your gut is having with your brain, that makes you think, do I need to call / text someone, or is this an emergency room visit.

Anxiety forced me to alter my day to give into it, which made me feel even worse. I want to give anxiety the middle finger and move on from it, but things don’t work that way. I did all of the usual recommended things like rest, listen to a meditation podcast, go for a walk. Barring an anti-anxiety med, which has helped many people I know, I remembered CBD oil (cannabidiol) can help! Et voila, that I can do.

Over the last two hours I’m feeling a little bit better as a result. Anxiety is still sitting on my shoulder, but it doesn’t feel like my brain and gut are fighting with one another anymore. And I can get on with that to do list.

What do you do to fend off anxiety?

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Stable

Steady Firmly fixedStable (adjective)
not likely to give way or overturn; firmly fixed
not deteriorating in health after an injury or operation
sane and sensible; not easily update or disturbed.

I call it MRI Monday, which fortunately included results on the spot. and it was all STABLE. As noted above, stable can have many meanings. It can be firmly fixed, like roots that grow into the ground or a cement foundation. Or it can refer to being sane and sensible (whatever that means). But in this case, stable means the multiple sclerosis isn’t progressing, at least clinically on high powered imaging. And because I feel better than I have since before the diagnosis nine years ago, I’d say it’s better than stable.

Interestingly my neuroradiologist was more concerned about degenerative disc disease which has improved as well. And I’m attributing that to the awesome Pilates I’ve been doing since March (stretching & lengthening!).

Though to keep things in perspective, it doesn’t mean without symptoms, but these days those are pretty minimal as well, as long as I keep stress DOWN, and the air conditioning UP.

Stay cool in these deep days of summer!

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Happy

Happy

Happy (adjective)
feeling or showing pleasure or contentment

These days I am finding myself happy (and healthy) and sometimes it’s hard to say that out loud for fear the other shoe will drop.

In December 2016 I started taking sertraline for depression. It was the first time I had a really bad, spiraling night, that wasn’t related to the multiple sclerosis (but maybe it is because it’s a central nervous system disease), or being treated for a flare-up. I recognized that I needed help. I reached out to a long distance friend who helped me for as long as I needed it. I went to bed and the next day I went to see my neurologist. And when it came to treating this issue, I couldn’t care less about any stigma that society has about brain health. I didn’t think twice about treating the multiple sclerosis or taking medicine for asthma growing up. My only issue was worrying about side effects. And although I didn’t turn purple, boy did I spend weeks insanely nauseous while titrating up to the full dose.

Fast forward 1.5 years later, and about a month ago I realized the sertraline (and probably age) is likely slowing down my metabolism, which already works backwards, so I decided to split the dose in half. I did this on my own without consulting my neurologist, because I know my body. I also now know how I should feel most of the time (say 80/20 rule). And I can recognize the shit for what it is, and frankly most of the time I just don’t care about stupid stuff anymore. I think the 20%, as Gaga would say, Baby I was Born This Way. And you know what? I’m good with that.

So a bit of a long about route to say most days I wake up happy. I enjoy what I do professionally (and the people I work with) and am having wonderful life experiences (on my own and with loved ones). I feel better than I have since before I was diagnosed with multiple sclerosis nine years ago. I’ve been so leery about saying the latter out loud, especially with my once every 18 to 24 month MRIs coming up next month. Feeling physically and mentally great also allows me to be the best I can be for the people I love and care for as well.

I spend way less time these days wondering when the shoes are going to come tumbling and I happily give the middle finger to the shit that just doesn’t matter.

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