I haven’t posted much about, or even been vocal about how I feel regarding the world we live in. And in truth it’s because the majority of the thoughts I have are negative. They are hate filled and ridden with anger. Sadness, disappointment and fear line my consciousness every single day and I feel so out of control.

I don’t post, I don’t write about, and I don’t share unless asked because I am fearful I have not processed enough to remain eloquent and respectful. Every person I know has different ideas and different views so I am being careful to align myself with those I rationally can commiserate with, and have healthy conversations with.

Thankfully, Michael and I are in agreement in 99.9% of everything we face, as a couple and as humans.

And that is all we are, at the end of the day; fallible, faulty, broken. And those traits continue to be exposed. our pure humanness seeps through the cracks.

So in an appropriate expression of our combined anger Michael and I finally had a good talk about how we feel and about how to proceed.

We are working diligently through this fear to continue to plan our future and learn and grow towards betterment of society, of ourselves as Americans. As we discuss our family’s changing goals and needs we are mindful, and oftentimes hopeful.

We know what has shaped us to be better, to do better, to know better. We hope to help shape the future generations to be even better than us. We fear for generations to come but we expect to raise a hopeful, fighting part of that generation that is ahead of us. We hope to create individuals that will be even better than us. To create little humans one day that grow into powerful adults that work tirelessly to make the next generation stronger than this.

I only share my family plans and hopes with those in my immediate circle because I truly believe it is so incredibly personal to each person, and each couple has their own narrative to be kept so close to their hearts. But in all the life changes I experience and my observation of dear friends’ changing stories, I am beginning to really hone in on the ideals I hope to instill in the world to come.

So, while I remain quiet during this upheaval of society, I know that I am working, I am growing and I continue to shift. I know that Michael and I are talking, we’re learning and we continue to plan.

I’m having a flare up. A flare up of new symptoms. A flare up of continuous discomfort from existing symptoms. A flare up of symptoms that lasts more than a couple hours.

I often feel daily discomfort and residual symptoms. But for me, a flare up is an increase in that discomfort, lasting more than a few minutes to a few hours. Discomfort, often times pain or inability to perform certain basic bodily functions. Discomfort that does not get better with rest, in fact it interrupts restful sleep which prolongs the discomfort.
Heat can be triggering for MS.

Now, I love this home I have created with my dear Michael; however, it has no air conditioning. So I’ve been surrounded by ongoing heat and humidity which regularly is bearable. Prolonged exposure to this heat, though, is apparently crippling with this disease. Prolonged exposure to a home that is 85 plus degrees, multiple days in a row is crippling to this disease.
Last night I felt new symptoms creeping in which sent me into an unmanageable panic attack. What was going through my head? A lot.

The things I was thinking about were: will I be able to walk tomorrow, will I be able to hold items, will I be able to see, will I be able to sit upright, will I breathe with ease, will I be able to feed myself

All of these are things that have been impacted in the past by my illness.

So, after a tumultuous sleep I woke up and this is what I felt…

I can see, yay, but my dizziness is so bad that my vision is blurred. I can breathe, Yipee, but my intercostal muscles are so weak that it hurts to inhale. I can walk, ok good, but slowly and unsteadily, my legs are dragging with exhaustion. And yes, I can hold things, but I feel burning and prickling throughout my shoulders and arms.

I think that it is good I still can function and I can do my work, thank goodness I’m working from home today. I think that I am glad to be able to prepare a smoothie and heat up rice, Michael is already aware we’ll need to order dinner tonight. I think in the immediate, it could be so much worse.

Then my intrusive thoughts make their appearance. I feel guilty for whatever stress I may cause Michael. And guilt that I cannot be fully present or capable in helping with any household things at the moment. I feel sadness that at (almost) 32 years old he has had to choose this life (though I thank the universe daily for giving me the opportunity to choose him).

Then my thoughts expand. I have to back out of a planned work out, though I know it’s best, I feel sad and I feel angry that this disease does often control decisions I make. I have commitments and celebrations and plans for the weekend (at socially acceptable distances while masked) that I may have to cancel, and I worry others will feel saddened by my physical lack of support. I worry. Period.

And, as I reach out to friends and to family to share this information, I think about the fact that this will never go away for me. And I work, and I pull and I reach to find what little shreds of acceptance I can. However small, I look for promise. Because, on bad days it is hard to find.

So, I took a moment this morning and went outside, and sat in the shade. I watched the dog leap around the yard with pride throwing his head back to bark, and I stuck my feet in the very cold water in his pool. In that moment I found the day’s acceptance. In that moment I was able to admit and think that this is no fun, this is actually a flare up., not just a bad day.

But

Flare ups happen, bad days are okay. I will be intuitive and nurture myself and start over again tomorrow.

Oh, and I start therapy again on Tuesday.

In the past year, for many many reasons, I have noticed my anxiety slowly increase. It has continued to climb pretty steadily for, at a minimum, 12 months now and it has felt increasingly overwhelming and unmanageable; even attempting meds made it worse because I am prone to every single debilitating side effect.

This quarantine certainly is not helping my life on the edge of agoraphobia.

However, this quarantine has brought me back to the present moment, and I feel I truly have my new pup to thank for that. Maybe I am being overly emotional. Maybe.

When I needed it the most, that was when I met Binx. And now, without knowing it, I needed Riker.

Yesterday, a friend stopped over to meet him (within the confines of social distancing of course). We said, multiple times, “I wish I was as excited or as happy as he is about literally anything.” Seriously though, this dog is 100% entirely present in every single moment he is experiencing. Due to this, I have inadvertently been forced into more presence, more often. If he barks, forget the episode of New Girl I have been trying to watch for 17^th time. Or never mind drinking any coffee while it’s still hot. When this little buddy needs me, he needs me now and I spend those moments focusing all of my attention on him. In a way, I meditate on my dog. (well…now I sound like an obsessive creep.)

But, this pooch has also reminded me what it means to fully feel feelings. I asked Michael the other day what has been surprising to him about owning a dog and his response was something along the lines of how emotive he is; but also how many emotions he evokes in us. More so than not, I have been extra skilled in ignoring any emotions that arise within myself, but when Riker is involved I feel angry and frustrated and defeated. Also, I feel love and hope and happiness beyond measure. He really has brought with him so many lessons, and reminders of what it is to identify, to feel and to express emotions. Which has been for me, the most important part of managing this lock down/quarantine/pandemic, whatever it is called.

So, in learning from my puppy, I can still get excited when I see people walking down the street, I can still stop and smell the flowers (though not every one needs to be sniffed), and I can still own my sadness while finding any joy in small things that bring out the tail wagging energy I need to get through each day.

January 24^th will be 12 years since I woke up and lost vision in my right eye. 12 years since people began taking my complaints seriously. 12 years of proof that I have this disease. 12 years of dis-ease.

12 years that I cannot downward dog my way out of.

I have a reached a new level of acceptance; a new realization on this path in my own version of Multiple Sclerosis. I have finally worked to be able to voice these thoughts out loud (and now on paper) for what feels like the first time. For the majority of those twelve years when asked how I am, or how I feel, I minimize, or disregard completely, how I genuinely am. For the sake of others’ comfort, I will say “oh fine,” or “I am ok,” sometimes I even say “good,” just so I don’t have to see the confusion, the sadness or the uneasiness on their faces. I believe this is ok to an extent, this is a coping skill I use and oftentimes it is my saving grace. 100% of my day is spent thinking about, managing and accommodating my illness; in these moments I don’t have to talk about it. But I have made an error in doing so for so long.

I have created a world in which I live that does not allow me to experience, express, or manage how I genuinely feel. This realm that I am existing in is just that, existence. Existence so that others feel better. And this existence has led me to struggle with identifying what is actually happening inside my body and my brain.

When it comes down to it, no, I am not okay. I am not okay in the sense that you are okay; in the sense that you function throughout the day to day without having to stop and think about every…single…move you make, or every…single…decision…you are faced with. Everything I eat impacts me, every pair of pants I choose to wear has consequences. The amount of time I sleep, the amount of water I drink, the social activities I engage in, even the work I do; all of these things effect how I feel minute by minute, hour by hour. I am slowly learning how to live the best way for me; but in doing so I am facing some realities I have not given myself permission myself to accept and truly experience for the last 12 years.

This past weekend I spent time with five beyond amazing humans (seriously, every person I have met because of Michael has been so so so wonderful). We enjoyed another city, in fact, another country, we ate such good food, and we experienced great music (minus being trapped under a smelly parachute).  But, it was in these three days that I became so acutely aware of all the things I have to do to survive in a “healthy bodied” society. I noticed every quirk I have and all the irrational anxieties that flood my thoughts day in and day out. I also observed that these perceived quirks and irrationalities are due to my chronic illness; these behaviors and thoughts are due to not feeling well 97% of the time and that other people (most often than not) do not know this, or are unable to empathize with this.

I am challenging myself to discuss this more with those around me; with those I feel safe with. Yes, yes I write a blog all about it; but, as terrifying as it is to share with the internet all of my thoughts and feelings, it is even more frightening to be face to face with someone and have to be vulnerable. More recently when people ask how I am, I have been saying “okay,” instead of “good,” as a way to ease into this new communication. Because while I am not the typical definition of good, I can promise you I am not bad, I am not unwell (unless of course it’s a bad day in which case I will probably be home and not providing the chance for anybody to ask how I am doing).

This acceptance I am facing will hopefully lead me to more answers, more coping skills and more ways to manage my MS. For example; I recently saw my neurologist and I believe that because I have been “good” for so long, he is being dismissive of my new complaints and concerns. That because I don’t look like I am struggling, and most of my symptoms are sensational versus functional, he is minimizing the new challenges I do face as my life evolves as it should. I am noticing more that when I do put myself out there and attempt to explain how I am feeling, others also minimize this, trying to rationalize how I am feeling or explain it away with simpler, more temporary ailments.

None of this is helpful for myself and for those close to me who bear the brunt of my frustrations (I say it all the time, and I’ll say it again, Michael is a saint). I feel alone and isolated, simply due to the fact that it is hard to express and share my world with MS, and that most people do not understand. And when I say understand I mean fully comprehend this life; empathy is huge and 99% of the people in my life empathize and support and care for me and I would hope they don’t feel all the gratitude I have for them. But so far, MS in my late 20s, and whole month and a half into my 30s, has been very different than the MS I had 12 years ago.

MS in my 30s will involve me asking for help, communicating more clearly, and advocating for more answers. MS after the last 12 years will be my continued learning and adjusting, my managing and accommodating; but, also a lack of shame, an increase in self-respect and more hope that I can feel well day to day, while I openly share my quirks and anxieties.

As the ball dropped, Michael made a joke about being able to see clearly now. Maybe it was because I had a drink or two, or because I was basically sleeping standing up at this point in the night, but it took me a while to understand that he said that because it is now 2020 (he’s a funny guy). Anyway, happy new year; let me tell you about the things I have been thinking about for the past five days now…

I think resolutions are bullshit. I don’t like them, I don’t like the thought, the word itself stresses me out. Resolution implies that I am not good enough, that I can do better, improve things or try harder. To set a resolution is to tell myself that who I have been up until this year was not good, that I need to change; also, good luck keeping any resolution much longer than January.

To me, resolutions are unnecessary expectations and pressures that we put on ourselves because maybe there is something we’re unhappy with, but also, maybe there are things that we are told to be unhappy with. Maybe?

Going into a new year feels like a chance to learn to build upon what already exists, what is already being done well. It is a time to recognize, that while yes, you may have a desire to feel better and an overall want to perceive things as “better”, it is important to set realistic, achievable goals. For this reason, I prefer the word intention. The definition of intention is “an aim or a plan,” which is much more palatable than “a firm decision to do or not to do something.”

So, for 2020 I will set intentions to be kind, to be full of love and to focus on my own goals and loving the life I am continuing to create for myself. This last year was stressful for me in many ways and I have been finding myself comparing that stress to others, which is not fair to me. This comparison process minimizes my own experiences and invalidates my day to day. So, I did not post a collage of my top 9 photos of the year, and I did not do a personal timeline of my last decade so as not to feel any way regardless of my own perceived successes or failures. My transition into this new time has been filled with brief moments of soul searching, goal setting and taking time to identify what it is my body needs and my mind wants.

While I did my yoga teacher training I learned to love back bends, heart openers and a general feeling of openness (if you own a cat you know this can be a very vulnerable place to be for animals and humans) . Recently, I have noticed myself literally and emotionally closing off to all of those poses and what they mean in my life on and off of my mat. Whether due to physical or emotional discomfort I have been cheating myself out of Camel Pose, Bridge Pose and even a restful Savasana more often than not.  Moving through this year, I intend to open up again, to find my voice and find my heart in a way that is authentic to me; in a way that makes me feel whole.

In this next decade I hope you for you all that you need, all that you want (within reason, maybe there is a lesson in not getting everything you want) and all that is comforting. And, if you take any of my yoga classes I hope you are ready to open up and restore, with intention of course.

When I turned 18 I thought, “finally, I am a grown up!” I thought it would be a wonderful experience full of adventure, trial and error and living my best life. That was 12 years ago to the day.

When I was 18 my mom and I sat in the doctor’s office wondering what thirty would look like for me. I was newly diagnosed with MS, I was so small and so scared.

Now, today, I turn 30. December 7, 2019 I am now thirty years old and very often all I can think is, “when will I feel like a grown up?”

But in reality, I am a grown up, a full-fledged adult. Yay me. I woke up at 7, I am sitting snuggled on my couch drinking my coffee (because now I am thirty I can’t function without it) and watching re-runs of Grey’s Anatomy, mixed with a little Disney Plus when the dramatics are too much to handle. I pay my bills, I feed myself and make sure I sleep. My mom asked my intentions for my next decade of life and the first thing that came to mind was to make sure I wash my face every night and every morning (right Kels?) and brush my teeth more often.

I woke up to a text (well many texts) sharing that I have what most people strive for; and that is knowing how to love myself, care for myself and listen to myself. Let me tell you, it took close to thirty years to learn these things. It took a diagnosis at eighteen to learn a lot of lessons, and it took the amazing support system I have to validate and enhance these things that I know.

Yes, my first decade was a typical ten years, I was raised by many strong inspiring people and I learned from every person and every place I encountered without realizing the impact it all had on me. Then my next decade showed me how far my strength could go. My teens brought to me the start of perceived adulthood, and the start of a new life as I knew it. But that seems fitting, no? At 18 individuals become of legal age, graduating high school, and moving into the real world in whatever way that comes for them and learning to grow and change as a person. I did all that, but also learned all of that with a disease. So my life, at this time, would have changed either way, mine just happened to change in ways 18 year-olds don’t often need to consider.

My 20s, despite being the most recent, are the most relevant. The most influential in creating the grown up that I am. My 20s with MS taught me what is important, taught me who matters and taught me what is worth my time. There were times that I thought, I have this disease I don’t deserve to do the things I want, or that I am not capable of living my dreams. However, as often as I had those thoughts, twice as often I reminded myself that I don’t need to live a miserable, unfulfilling life. I created a new story at 23 when I lived on my own in a new state. That story said I can do whatever I want, as long as I also rest when I want. I began to live a new narrative that allowed me to have pity parties, but only for one day at a time, and only if I picked myself back up and kept doing my homework, or kept going to work and kept paying my bills.

So, entering my next ten years I plan to continue to tell myself these stories, to remind myself I deserve to feel well, to do well, and to be well. I deserve to love so hard and so much, but to also accept all that love from others close to me, and on the edge of my life. In my thirties I plan to only make my life that much better, and to feel that much more proud of all that I can and will do every day; and that includes washing my face and brushing my teeth, hopefully. I will continue to practice listening to myself, caring for myself and loving myself.

Every year I would receive a joking phone call from my grandpa saying, “good morning, I am just reminding you that it is Pearl Harbor Day.” And today, I got a message from him starting with, “happy special birthday,” and ending with, “don’t forget that it’s Pearl Harbor Day.” My love for history, and my immense respect for the second world war will never let me forget that it is a day that will live in infamy. But, I will also choose today to honor me and to begin my next decade feeling loved and supported and strong.

I am still small and sometimes scared, but I will spend today, and quite possibly the next ten years, wondering when I will grow up.

I took a sick day. I debated doing so.

I woke up, got dressed and put on makeup. I packed a lunch, drove to work and turned on my computer. I went into my dear supervisor’s office, chatted about my PTO hours, and then I went home.

I changed back into pjs, made tea and got in bed. It’s been a long time; this is only the second sick day I remember taking since working as a therapist. That is the second sick day in about five years.

Rest is essential. It is important.

In yoga terms, Savasana is the most important pose, though often the most difficult. Deep rest; allowing your body to absorb all the word it does throughout class and throughout life, allowing your body to rest and to reset. Corpse pose; allowing stillness, cooling down and genuine comfort.

I wonder why, for me, it is so hard to settle into this physically and emotionally. Society influences that, to an extent. However, “self-care” is also promoted equally as much. Often misconstrued, self-care says to take baths and to exercise, to meditate and make good choices. For me, self-care is listening, truly listening and doing what it is that fuels me; eating but intuitively, taking my meds and communicating effectively. Yes, I love love love taking too hot baths, soaking in perfumed and glittered bombs, and of course I’ll eat a salad and work hard to reduce inflammation in my body, but I will also enjoy the Twix that the doctor at work so kindly refills daily. And I am always, always a proponent of yoga and meditation, however that shows up.

But, tell me, when does doing those things become detrimental? It becomes detrimental when you try to fit into this idea of perfect self-care, or doing it the “right” way, and stop actually listening to what your body, and your mind need or crave. It becomes dangerous when you obsess over eating the “healthy” thing and don’t experience that feeling of bliss that comes from eating a grilled cheese sandwich (in fact, I think I will have one today for lunch). It borders unhealthy when you pack your schedule so much so that finding time to go to yoga becomes stress inducing versus stress relieving.

Self-care, deep rest, it is not a show. Not a competition to win, or a race to run. It is not something to parade around, and it is not one more thing on your to-do list.

Savasana, in yoga and in life, is to be practiced. It is to be a continuous lesson in the balance between self-care and self-respect. Between what helps and what hurts. Quiet moments when possible, made into a routine to ensure sanity, peace and comfort. Today, my deep rest comes in the form of very real conversations with very loving people convincing me to take a physical rest without guilt.

I ended up taking a sick day today. A day full of recharging in the form of grilled cheese, Disney plus and as many kitty cuddles as I can bear (though I may have to force that last one since Binx has run up and down the stairs at break neck speeds three times in the last hour).

I am stuck in the middle.

Stuck in between a world that says I am too sick and a lifestyle that says I am too healthy. I am trapped between my “normie” friends and family, and my social media pages that continue to validate and authenticate the symptoms I am genuinely feeling.

This is a hard place to live, a hard place to be stuck.

Recently, about a week ago, I signed up for a new yoga studio; it’s what I need, the location is close to my home, it is small and welcoming. I haven’t gone yet. My week was busy so I was unable to make the Tuesday class I’ve been enjoying for the last month, so I planned to make up for it over the weekend. I planned to begin my renewed self-care journey and allow time for my health, physical and emotional. What a great lifestyle I planned to return to.

Saturday came, class was at 10  am, I was finally relaxing in my bed. I finally slept through the night after weeks of waking up, after days of feeling more tired than before I went to bed. And I decided, I feel good I have the day to relax so I am going to take advantage of that. I am going to trust that in this moment, I should stay home. I should stay in bed with my boyfriend that I rarely spend quality time with, I should stay home with my purring cats that believe they are lacking in attention. I should stay home for me because I am trying to listen to my body more. I told myself I will go Sunday morning.

And now, it’s Sunday morning and I return to the idea that I am too sick to live the lifestyle I want, at least to live it on my terms. Yesterday I did things right. I took time to rest, I ate somewhat healthy, worked to avoid trigger foods for the most part (but when your amazing chef of an uncle makes mac and cheese it is certainly hard to resist) and took time to decompress before bed. I did things right.  I woke up at about the same time I wake up normally despite having not slept well. I woke up because every muscle felt stiff and screamed in pain, every joint stuck in its place. I woke up because my head was spinning and my stomach was unsettled. I turned and pulled the blankets off (there’s many because it’s always so cold) and swung my feet over the edge of the bed and realized, yoga was not going to be a good idea today. I am trying to listen to my body more.

When I have days like this Sunday morning my mind races, my thoughts are on a loop and I feel defeated. I think of my doctor, I think of my many doctors and get so…apparently lost for words. It’s days like these that I wish my doctors were in my home. I wish my doctors who invalidated what I feel and often dismiss my questions could now see how my body responds to this disease despite doing things “right.”

However, I remind myself that this is my world, this is my reality and I am grateful that as my doctor says, “there is nothing wrong on the outside.” There is nothing functionally wrong with me, and it is mainly sensational; for lack of a better way to put it, it really is all in my head (silly leisons). As he put it the other day, my legs continue to show up for work each day, despite the effort it takes. My lungs continue to allow breath, regardless of the heaviness they feel.

So, while I continue to listen to my body I learn again what days to do yoga and what days to allow deep rest. The rest that requires I stay in bed, not the coveted savasana after an active practice. I have returned to listening to my emotions as well. I have given myself that privilege. When my body continues to cry out that it just cannot take any more, I pause. I am still and I feel. I am reminded that this is the most potent thing of all, to truly feel.

To truly feel with acceptance and without judgment. This week I shared with a close, close wonderful friend the science behind anxiety and we talked about how insanely powerful the hold of emotions can be on the physical and mental state of one’s being and I was reminded how important it is to honor that power. So this is what I am choosing to do.

I choose to live a life of honoring the sick and experiencing the power of my disease and of my own emotions.