Thankful

Thankful

Thankful (adjective)
expressing gratitude and relief

A – autumn chill
B – body that carries me day to day
C – city life
D – dancing
E – exercise
F – family & friends
G – giving
H – happy
I – ice
J – jam
K – kindness
L – love
M – music
N – naps
O – options
P – pizza
Q – quiet
R – red
S – sea
T – tough
U – unusual
V – visual
W – winter
X – no more xenophobia
Y – yippee
Z – zany

Thankful to those who continue to come on this journey with me.

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Strong

Strong

Strong (adjective)
having the power to move heavy weights or perform other physically demanding tasks
possessing skills and qualities that create a likelihood of success

When I looked up the definition for strong, there were at least seven different variations. When people think of strong they most often think of how much or how little you can lift or “what doesn’t kill you, makes you strong” (I should look like the Incredible Hulk by now – the Mark Ruffalo version). Or “I could never be as strong as you are dealing with MS.” Or “strong is what you are when you don’t have any other choice.” While people think those are compliments, I’m no stronger than anyone else who deals with a chronic (sometimes acute) disease.

For the last week, I was up and down with my, this time of year ick. And for sure I didn’t feel strong. I was full on, 100% pity party, having to remind myself regularly that this is way better than having to deal with a flare-up for three months. BUT when you’re in the throes of non-stop coughing, can’t sleep, can’t get comfortable, can’t get yourself out, can’t clean your apartment, and can’t attend events, and being a day away from dreadlocks because you can’t shower, finding the “can” is not easy.

And while (fingers & toes crossed), I’m not having a flare-up, my immune system working overtime to fight this ick, lends itself to inflammation, which for me is constant tingling. And having to take nighttime cold meds to squash the coughing, means that I’m foggy for most of the next day, and it gives me really weird, fucking dreams, bordering on nightmares. Those with MS know that it takes us longer to recover even from the average cold. While I’m not thoroughly fatigued, I’m still super wiped out, and the nighttime cold medicine doesn’t help the cause.

This last week I also had to forgo my regular exercise routine, which is the first time in many months, and while most say don’t beat yourself up, it’s ok to be kind to yourself when you’re sick, for me even taking a week off can be detrimental to my physical and mental well-being. But tomorrow, bright and early, I will don the work out clothes and drag myself to pilates, which I truly love.

Strong can mean many things, and we each have our own version(s) of strength. You don’t have to lift heavy weights to be strong. But know that whatever your version is, you are indeed strong, powerful, and capable.

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PS – If you don’t know Ady Barkan, please follow him. He is literally using his last breath to fight for what should be a right, rather than a privilege. To me he is both strong & a hero.

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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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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