Fourteen years ago I was diagnosed with MS. 

June 19, 2008 it was my last week of classes as a senior in high school; I was heading out the door to meet some friends and my mom stops me and says, “by the way, the doctor called and confirmed it is multiple sclerosis.” And I carried on with my day. And with my life. 

Now, obviously there was eventually a bigger conversation and many more doctors appointments; but this moment in the scheme of my diagnosis was pretty anti-climactic. There had been two and a half years of build up. 18 months of feeling awful, having tests and waiting for an eventual answer. Comparatively two and a half years is not a long time when it comes to an MS diagnosis so some would say I am lucky. Some would also say I’m lucky because I was so young when diagnosed that I had so long to treat it and navigate it. 

The younger version of me only saw it as that much longer to get worse. And I did. Then I didn’t. 

The first was the easiest year because, finally I had the answers I was waiting for. My second year of officially having ms was the hardest. I was adjusting to college and adulthood and a chronic illness. But now, 14 years later I’ve adjusted to a whole lot more. 

The path my illness has taken has has its up’s and downs, as anybody’s does. I would say, though, overall to reflect on my illness is to recognize what it has given me. I say this nostalgically, and happily; that does not mean it hasn’t caused struggle, and it does not mean there aren’t regular tears, panic and fears. It does, however, mean I can recognize and appreciate the role all of that has had, and continues to hold, in creating the life I work towards daily. 

I’ve learned a lot about my disease and a lot about myself. I now know when I can and cannot push it. I know now when to speak up about my symptoms (though Michael is still the only one I’ll tell). And I know now when to speak up about anything in my life (and I mean this in a general sense and to anyone). I also know when to rest, how to rest and where to rest (often covered in a blanket on any available couch). I now know some true examples of strength and that it is ok to own and celebrate my own power in that. 

I know I have a lot of experiences most people don’t have, medically or otherwise, and for that I am grateful. Especially if it means I can hold another persons hand as they face a challenge, a struggle, or a fear. And hopefully I can help them to also recognize the strength and power that comes with life, chronic illness or not.

While in the midst of it, it feels like I am in a fog. It feels as if everything is hazy with a deep, dark film covering my world. 

When I have a flare up, from any of the things that are “wrong” with me it is often subtle, a sort of cumulative effect. I have a few days where I feel just not quite right. I have many days of fatigue so bad I would rather drag around a bag full of bricks all day. There’s the nausea, the pain, the blurred vision, there’s the mood swings and baseline anxiety; the all encompassing depression and underlying fears. The daunting inability to regulate a single body system leading to fainting, and inability to digest, to not eating to constant overstimulation of the nervous system often resulting in, at minimum, a never ending vibrating sensation. And there’s whatever new symptom I may have. In this most recent case, a throat and neck pain. Neck pain that receives no relief from pain killers. Throat pain, that luckily is more sensation than function, but off putting nonetheless.

These things can last hours, days, weeks and months and be so unpredictable and inconsistent it is maddening. Typically when I’m in the midst of an MS flare I have every cognitive defense up in order to ignore, distract and pretend it’s not happening. I try my hardest to carry on with my daily routine and schedules and follow through with all social plans and things that I want to do despite struggling so hard. 

It is similar, for me, when I’m a depressive episode too. Daily tasks feel daunting, and social plans feel crippling. However, if I pretend it’s not happening sometimes being so busy leaves me feeling too exhausted to have time to feel the overwhelming sad that inevitably settles in. 

But, I digress, this post is about emerging from these moments and coming out on the other side. 

When I move through the depression, or when I notice my symptoms (new and old) slowing down or dissipating it feels as if I opened my front door after a storm.  When things are still, and quiet and fresh and bright; that’s the most noticeable…the brightness of literally everything. When I can walk down the hall without being winded and I can sleep a full night, that’s when colors are more vibrant. When I can do yoga and go to work without feeling immense pain, that’s when I truly exhale. And when I make it through a day, or even a half day without crying or feeling extreme anger, that’s when I know I will get through it, and I really am okay. 

Coming out of a flare of any kind feels like a reset, it feels like work to put the pieces back together but it feels more worth it each and every time I recover. There is always a thought lingering in the back of my mind (especially when new ms symptoms are involved) that I am now carrying this damage with me forever moving forward; but, it feels lighter now. I know it will always creep back in expected or not, covert or overt, physical or emotional, these things will never go away for me. 

However, when I am able to see that light at the end of each tunnel I am reminded that the permanency of it all is not worst case scenario. The hope and the good days are truly the reminders that I am, as the kids say, living my best life…to the best of my abilities. 

I will preface this with…I am not pregnant, we thought we were but it was a fluke…keep reading for the explanation. 

They say marriage is for better or for worse, well, two and a half months in we did not expect our worse to hit so hard and so fast. 

We thought we were 9.5 weeks pregnant and then…

Last Monday I called the doctor because I had some bleeding. They rushed my ultrasound, despite having it scheduled for less than 24 hours later. 

When we were there I could tell something was wrong. I’d seen enough ultrasounds to know what it should look like; and this certainly did not look like that. Then the tech told me “you may just be too early to see baby yet, I’ll go have the doctor review this.” 

Then, the doctor came in and asked us to go into her office to review the images. My heart dropped, I looked at Michael in a panic. 

The doctor sat down and said “this doesn’t look normal” and went on to explain it was a molar pregnancy. What that means is instead of an embryo forming, tumor tissue formed in its place. This is very rare, we were told it is about as rare as being struck by lightening. (Why wouldn’t my body pose a fun challenge right off the bat, so soon into our fertility journey?)

I cried, I still cry. Some of the medical support I was offered was mind blowing. The nurse on the phone said to me “at least it wasn’t actually a baby,” (which we’re still waiting on results to confirm or deny this) and then when I share in that same conversation that I am a therapist she asked if I was accepting new clients. I was in shock and could not wrap my head around those statements. 

I accept what happened, what is happening, I logically understand this. But I oscillate between sad and angry and frustrated and numb and completely ok. 

I think the worst part is that my body continued to think it was pregnant and in overdrive. (With molar pregnancy the hormone level is about 100,000 over what is baseline for pregnancies). I have all the symptoms, I don’t feel well, I even have a tiny bump. Touching or protecting my belly, though unconsciously, would send my thoughts racing  and tears flowing. 

Thursday afternoon I had a surgical procedure to remove all the cells and tissue. It was done with care and with a medical team I cannot speak any more highly of. I will need my blood monitored weekly for a while and then monthly to ensure all the tissue has been removed and does not progress into potential cancerous cells, or continue to trick my body and increase the hormones once more.  Again, I understand this logically but sometimes I cannot even fathom that this is happening to me and not actually a crazy movie I decided to watch on Hulu, or whatever streaming network appealed to me at the time. 

I think deep down at the start of my “pregnancy” I knew something wasn’t right, or normal. I kept saying it felt fake and I felt as if I was pretending the whole time; turns out i was. I got so much support from those that we shared the news with, and even more support once we shared what it was that was really going on. I never once felt invalidated or wrong in my responses or actions; however, I think about what it’ll be like when it’s real, when it is a successful pregnancy.

I want nothing more than to bring a tiny human into existence and so far this first chapter of our parenthood story has been my body failing me, once again. That does not even surprise me, but it does bring up past emotions around medical scares, medical trauma and continued daily medical management on my end. 

When I believed I was pregnant, it was such a nice relief, a break per say, from my regular MS routine. I stopped my medication, I felt well MS wise and I was hyper focused on something productive and joyful that I could do with my own body; a body that has always stripped me of control. So, to have the realization that it would not be 10 months that I could live in this perceived MS free bliss, but only a mere 10 weeks was heartbreaking. It was a stark reminder that I exist in this body, I manage this body and I remain hopeful daily that this body will continue to work efficiently and productively; despite not carrying a child, despite all the care I put into it and despite my own dreams and wishes. 

So, why don’t I regret sharing potential pregnancy news prior to the expected twelve weeks? Because I would not have managed this without the support we received. Because Michael and I, while strong on our own, are beyond grateful for the friends and family and love that surround us, not only in our good times, but also these hard, hard times too. Because the money sent for dinners, the coffee, the treats were all so appreciated and despite my saying no its fine, it truly made a difference when I could not fathom putting on clothes (because none fit due to my body thinking I was a pregnant and still developing a bump) it was nice to not have to prepare meals. Because when my appetite was haywire and my mood swings were beyond belief, a cookie was instrumental in calming me down. And because when I need to talk about it, I know there is an ear, or a text message available immediately and that is honestly what has helped me through one of the worst weeks of my (our) life. 

I missed my thirteen year MS anniversary. 

What does this mean? It means that 13 years ago on June 19 I was 18 years old leaving my house, to most likely engage in summer shenanigans with Stacey, and my mother told me that the doctor called her to confirm my diagnosis. It was official, I had multiple sclerosis. And every June 19th since, I have celebrated, or at least acknowledged this. I have made note of it, often, to recognize my strength in dealing with it and my resilience as an 18 year old in addressing the diagnosis appropriately and in a healthy way. 

But, this year I missed it. On June 21st I realized that I had overlooked the day and carried on with my life. I shared this with a couple friends and they asked, “how do you feel about this?” At the time, I realized I had no answer, or at least no honest response without first reflecting. 

So, this is what I have thought about. Currently, within my little world of MS related activity I am conflicted around the fact that my own experience with the disease is changing. My MS continues to be managed, I am still doing well and have zero overall arching concerns. I have, however, started a new medication and with it comes a lot of chaos, emotionally and physically. 

Due to personal reasons, Michael and I, along with my treatment team, have determined it best at this time to begin Copaxone. This is an injection that is done three times per week; I am fortunate to have Michael to help with this as I cannot fathom doing this on my own. I began the process of switching medications shortly before our wedding and was reminded of the nightmare that is ordering specialty medications. Being on hold for hours, having to repeat personal information multiple times, having incorrect insurance information being recorded, astronomical co-pays and the fear of being denied assistance. Then comes the medication itself. Each injection is a process in and of itself. I must hold heat to the area prior, Michael will do the injection, it hurts…a lot, sometimes I cry, I ice the area, I struggle to get comfortable for about an hour and then I give up and fall asleep, still in pain. The next day the are aches, sometimes it itches and all the while I feel the indentation left in my skin, hopeful that the area will return to normal, full well knowing a side effect is permanent skin marks. 

This is tiring. This is unnerving. This is a regular reminder of the toll this disease takes on me, takes on my loved ones, and takes on life. Like I said, my disease is managed; overall I am well. But, overall, I am exhausted and going through a transition in how I am living my life with this disease. 

I am re-evaluating my diet in an attempt to feel well in any way I can control. I am working on bettering my sleeping habits, and am navigating my exercise routine in a way that is realistic for me. I am following up with doctors and initiating new appointments. I am communicating better than I ever have with those that can help and I am actively focusing on my anxiety and stress levels as well. Needless to say, I’ve been doing a LOT in a short amount of time. 

And this, I imagine, led to the reason I overlooked my 13 year MS-iversary. 

To return to the question from my friends…at 13 years with an official diagnosis, 15 plus years with disease symptoms, I feel angry. I recognize that I continue to move through the fluid stages of grief and at this anniversary I feel angry about having MS, about creating an anniversary for something so awful. I feel sad for putting my husband through this regularly (though he is wonderful and knew full well the extent of how exciting a life with me would be). And I feel exhausted, I feel drained of any emotion having to due with being sick. 

But, I also feel proud. Proud of all that I manage to do daily, weekly, monthly and yearly. I feel proud of holding a full time job, maintaining a social life, and focusing on those that I love. I feel proud of teaching yoga and finding my self care in more ways than one (bubble baths and wine included). And I feel proud of being honest in my MS journey, though most of the honesty comes through in writing. 

Also, I feel grateful. Grateful for my husband, my family, my friends, my friends turned family. I’m grateful for ridiculous pets to amuse me when I just want to scream, and that somehow they know when it’s time to cuddle because I don’t feel well. I’m grateful for the home we’ve created and the life I continue to build and work towards. I am grateful that my disease is mainly sensation based opposed to function based and my suffering and challenges are most often temporary. 

While I’m angry and sad and frustrated with MS and with missing this important (to me) date, I am also proud and grateful and accepting. When asked directly how I feel about that, I will most likely share that I am indifferent because in each moment, without reflecting, there is no possible way to gather my thoughts, or to recognize the extent of my feeling around it. 

Now, on June 26 I am acknowledging my 13 year and 7 day MS anniversary. Tonight, Michael an I will go to dinner, we will laugh and soak in each other, most likely not talking about MS and actively work to relax. I will have a glass of wine, I will toast to my resilience and I will enjoy the life I have created despite multiple sclerosis. 

There are a lot of factors motivating this post, but I also needed to take some time before writing this one. A lovely co-worker shared yesterday that they enjoy my posts despite not having MS, there’s some relatability. And my wonderful brother in law and I were relating, as well, on the oh so exciting challenges of medical bills and the joy that comes with lack of control over health. 

So, here I am, again thinking of my disease. My dis-ease, not only with multiple sclerosis itself but all the stuff, the chaos, that comes along with it. Without going into too many boring details I’ll share that I had my year exam. The way it lines up usually is that the start of each year I go to my doctor, and every other year this includes an MRI to view my disease progression. That’s all well and good, right? Well since this always happens around Jan-March I have made the choice that a co-pay plan is best for me because well, it’s nearly impossible to establish 3000+ in any fsa account by the time my MRI rolls around, added to that the stress of the unpredictability of this monster and the concern that should I need any extra treatment the amount of money I would spend on care is astronomical. 

All of this is considered each year during open enrollment when it’s time to choose which health insurance plan to pick for the following year. Now, at 23, 24 and even 25 these were hard conversations to have with those in my life; mainly because not many young people have to factor their health concerns into their insurance decisions. 

Back to my appointment this year. Some background:

Early in my diagnosis, I had a challenging time finding a medication that helped slow my disease progression. In 2008 there were really only infusions and injections available and I tried at least three of the injection options with limited success/luck. The side effects were debilitating and at 18-22 I still wanted a quality of life. The IV available was not an option for me personally due to the unknown factor of the severity of my MS, but also the potential side effect of PML (a potentially deadly brain disease caused by the JC virus). 

Fast forward a few years, I ended up being put on a few different newer pill medications, and after some trials I landed in Gilenya. Which, I finally loved. Limited side effects, no new lesions since starting t and a daily PILL…finally young Christina could commit to medication compliance again. 

Fast forward again to 2021, potential new lesions for the first time in seven years and some other personal reasons (I will write a blog about in the future) are leading me to start the conversation about a new disease modifying therapy (DMT). 

I am referred back to the neurology clinic through the hospital system, ironically to my previous doctor. I attend my appointment and panic. I’m alone in the waiting room and my busy thoughts lead me right back to the anxieties my 18 year old brain felt early on in my ms journey. So, I text Michael and distract myself and wait to meet with the medical team. 

I talk with the doc about options, I go home and talk with Michael and collectively we come up with a plan. I talk myself into Tysabri, the monthly infusion. 

At my appointment I had gotten quite a bit of blood work done, which mostly looks normal given my MS. (Yay)

However, one test comes back showing I am JCV positive. Remember that fun virus that can cause awful side effects, yep, I’ve been exposed to it at some point. (Yay)

So, though the risks are low, especially in the first two years this is a risk I am not willing to take, yet. 

Here we go again, prolonging my process for switching meds despite my feelings of urgency. Now, my doctor wants to see my MRI results to ensure proper options available to help avoid any further progression and keep me safe overall. 

But, what about insurance? What about co-pay? What about time away from work? What about pain? What about my sanity? What about the help I may need? Can Michael give me a daily injection? Does he want to? Will I be compliant? 

If you ask me, or I tell you about all of this during these few days, I will probably laugh uncomfortably, or shrug and tell you “eh, such is life with chronic illness,” but it sucks. Today I can write this rationally, as I lay in bed composed. But anytime I have an appointment it’s a hard day for me. And, whenever I have to make health related decisions, I struggle to wrap my head around my disease, my body and my lack of control. 

Early on, I was still in college and my mom and I left a neurology appointment and I cried. I remember her asking me why since it was a relatively good appointment. I shared that having to see a specialist and discuss all the things that are wrong while I often actively avoid those thoughts is a challenge.  Now, on appointment days I allow myself to wallow, to struggle and to be miserable. In fact, since then I have created a routine in that I typically treat myself afterwards in the form of a sweet treat and a trip to target for whatever target tells me I need. 

This post is a true example of “the things I think about.” It rambles, it jumps around, it’s organized chaos, but such is my life with MS. I took time to process before writing this  in order to share my thoughts clearly. I’m all for feeling every single feeling as they arise, but I had to do that in my own way prior to sharing, and now I am at a point where I can shrug and tell you “chronic illness is great!” And sarcastically smile as I say it. 

Every day I take some sort of self inventory. I wake up and scan my body and notice what parts feel what way. Let me explain:

Before I even fling the covers off me and swing my feet over the edge of the bed I assess what symptoms are, or are not, making themselves present today. Dizziness? Maybe. Weakness,stiffness, pain? Perhaps. Nausea? Oh most definitely nausea. The list goes on. Along with this inventory I take, I wrack my brain for why I feel the way I do in order to determine my best plan of attack for the day. Did I eat poorly yesterday? Most likely. Did I sleep well? Probably not. Did I push a little too hard in any of the previous days (or weeks) activities? Sometimes. 

And that’s the start of my morning routine. 

The exciting surprises that come along with chronic illness are when there are any, and I mean ANY, deviations from what I noticed during my morning inventory. 

Something changed, something feels different, I don’t feel well. WHY?! Anytime I feel anything other than perfect (which if you know me, you know I very rarely feel well) I panic. The way I cope with the panic is to determine the cause of the ailment and obsess over how to manage it, or more unhealthily how to control it. Now, with chronic illness, undiagnosed concerns and overall anxiety, this is a very very poor coping skill, in fact this is quite the opposite and often leads to more panic, increased anxiety and less general wellness. Catch 22, huh? 

this is my norm. My every day. My baseline level of function. Sounds fun, right? 

THROW IN A GLOBAL PANDEMIC GOING ON A YEAR NOW AND THIS PARTY REALLY GETS STARTED. Now, when I have a symptom, any physical feeling at all really, I run through the list of possible reasons why. 

Multiple sclerosis 

Postural orthostatic tachycardia syndrome

Gastroparesis 

Anxiety

Aging

Lack of sleep

Hunger? 

When did I exercise last 

Add to this COVID? 

This is a long list, this is anxiety provoking, this is very real. However, fear of a very under researched, potentially debilitating illness with limited treatment options is part of my day to day. Unfortunately, or fortunately. 

Prior to 2020 I lived with medical anxiety, fear of the unknown health wise and always, always took extra precautions regarding my awareness and my own health care. Now I get to watch the rest of the world do so. 

So, my advice for those having a hard time wrapping their heads around this, what is being referred to as unprecedented times is this:

Be selfish-selfish in your boundaries, selfish in your sanity and selfish in your safety. 

Be unapologetic- own your coping, whatever that looks like, own your quirks, however they manifest and own your strength. 

Be proud-there is no right or wrong in how to manage any single thing in the world. Be proud that you wake up, you feed and bathe yourself (and others) and you function each day. Be proud of the zombie like state you need to be in to get through this. 

And lastly 

Be emotional. Be unendingly sad, it will pass. Be unbelievable angry-why wouldn’t you be? Be gracious, you ate today right? Be loving, with it here’s AND yourself. And be present, there are still moments of normalcy, there are still times to cherish. 

Find the meaning, not obsessively so as I attempt to do. But, find the joy in the unrelenting, daunting reality that is human; with it without illness. 

I have not posted, or written in a long while. I have been navigating a few chaotic life things of my choosing and settling into a new (old) job.

What all of this has brought up for me are reminders of how well I know my triggers; but also how frustrated I get at those triggers and how I try to rationalize and justify them away. For example, Friday night I felt sick…really sick, and I haven’t in a while. I spent some time trying to pick apart my last few days in an attempt to identify what it was I did or ate to bring on these symptoms, telling myself I’d be sure to avoid whatever that was in the future. When Michael realized what my little chaotic brain was doing he took a minute to stop what he was doing and tell me, kindly, that i have MS, I have a disease and I often don’t feel well with no rhyme or reason. This was more helpful that I think he realized it would be. So, while I am aware of things that cause me to feel unwell, or exacerbate any of my symptoms, I also have to remember that some of the time I also won’t know, and won’t be able to investigate away what is actually occurring in my own body.

2020 has been a lesson, for me, in not always needing answers despite looking for years for solutions and quick fixes. This has been a year of letting go of some of the obsessive ways in which I have tried to reign in this disease and work to eliminate as much discomfort as possible. As my nervous system wreaks havoc on literally every other system in my body, I have learned some of the things I can control to help navigate these awful sensations and poor symptoms.

There’s the standard, extreme heat and extreme cold that cause my sensations go to haywire. Hot leaves me feeling sluggish, extra fatigued and often very nauseas, whereas cold leaves me aching and stiff. There’s overstimulation of my sense, which is a hard one to wrap my head around. If lights are too bright, sounds are too loud or I’m feeling claustrophobic my nerves flip into vibrate mode. This feels like my inside are quite literally vibrating rapidly. And then there’s the more visible fatigue of specific body parts. This manifests in the form of arms, hands or legs being just so tired they start to shake; this most often happens after carrying bags or completely any tasks that require dexterity of any sort.
The more internal triggers I am aware of are that of inflammatory foods, extra sugar and sometimes a little too much wine on a weekend. These things lead to my body deciding it cannot function anymore and will nosedive pretty hard (hopefully into a pillow and a few blankets).

Some of the lesser known triggers, however, are what I perceive as making me look crazy…thank god for Michael. These include eating too much, or too little, not going to bed super early most nights, having too many mental or emotional tasks in one day, attempting new tasks, standing in lines, standing still period, driving for a long time, being in a car period if I am having a bad day, carrying on a conversation too quickly in the morning, talking for a long time, clenching any muscles, etc. etc. etc.

Any one of, or all of, these things seem monumental to me at any given day. These things are so common and so just…second nature that most people would never think twice about how daily tasks and unavoidable situations can impact others. This fact has led me to manage these on my own, to keep quiet about them or to secretly use my tricks for feeling better without bringing attention to myself or how I’m feeling.

And I don’t share this for pity, as I’ve said before, I share this for information. I share this for insight and maybe some form of enlightenment. More for me than anyone. Often times I navigate this disease on my own, then read another blog or article and realize I am not losing my mind; I’m living the best way I can with the cards I’ve been dealt, which is great because I don’t know how to play cards.

If I am lucky I stay asleep until my alarm goes off. If not, I’m either woken up by a dog whine, a cat hiss, baseline discomfort or general anxiety. Such is life at the Till family zoo, or life with chronic illness, life during a pandemic, or adulthood period.

Sounds somewhat chaotic, no?

Yes. Yes it is. Anyway, I will share some of my regular AM thoughts as I prep for each day.

Pending my cause for consciousness, my first thought is usually while I lay in bed in the dark for just a moment. At this time, I will take inventory of my body and my overall mood for the day. Do I feel well? Hopefully. Is it a challenge to sit up due to sore, fatigued muscles? Usually. What is that first deep inhale like? On occasion it feels heavy, hard and strenuous due to the tight intercostal muscles (the MS hug is nowhere near as comforting as the name would lead you to believe). Next, as I swing my sleepy legs over the side of the bed and feel around the floor with my feet for my slippers, I usually think, “ugh I should have drank more water last night.” This is often promoted by the blacking out and dizziness that accompanies any movement into a vertical position (this I can attribute to a chronically low blood pressure, but not quite low enough to cause concern apparently).

As I carry on through the morning, moving through my regular routine I think about what my day will feel like. I’ve had MS now for 12.5 years officially and have gotten pretty good at understanding what each feeling or sensation will mean for the remainder of that particular day. So, where most people plan their daily activities, meals, schedules, etc. I typically plan for modifications to all of those things in order to achieve optimal function, or to avoid baseline dysfunction. I begin to run though the priorities in my mind; feed self-what can I grab quick, or what’s already made, bathe self-hopefully I prepped and showered the night before, clothing-the comfiest, most reliable outfit options are readily available (thank god leggings can be office casual on occasion). Continuing to thoughts of any variation of self care I can achieve for that day-usually in the form of medication compliance, maybe washing my face and most definitely always a warm cup of coffee (wine at night if I’m lucky).

Now, my thoughts move to everyone and everything else. Are the pets fed? Is dinner thought out and/or is it something Michael can handle if I’m really not up to it? What would it be like to ask him for help but then step away and let go of control (haven’t mastered that one yet, TBD). How long is my work day today, are there chances to catch my breath at all during it? Is today a running day, if it is I should have extra coffee. Do I need a Ritalin? Oh maybe I’ll finally remember to take my electrolytes…probably not. Should I go to the vending machine, no, christina do not waste money when you have perfectly good snacks at home. And my all time favorite daily debate, if I just order lunch out today I can promise myself I won’t do it again until next pay period.

This stream of consciousness is usually followed by Thoughts of hope that all of my friends are okay today, I hope for them to have something good happen at some point and they smile at least once. And I think about each individual and what’s going on with them and follow those thoughts up with as many well wishing texts as I can get in before my day slips away from me (sorry if you’re my friend and you don’t get daily texts).

And by the time 8 AM rolls around I am exhausted, emotionally and physically because I don’t know what it’s like to turn my brain off-hence the wine some nights. At this point though I have prepped, catastrophized, planned and accommodated enough to last a week, fully knowing I will go through that cycle all over again the next morning.

Come into rag doll here. Bringing your feet wide, bending at the hips, opposite hands reach for opposite elbows. And rest, letting your head hang, gravity gently tugging at your neck. Slowly nod your head yes and release tension.

Breathe.
What is it like to sit in the shit? What is it like to feel that tension release and to feel all of your feelings without distraction, and without judgement? What is it like to not try to ch age the feelings?

These are the things I think about when life is hard, with and without a chronic illness. These are the things I think about when life happens and I am stuck in the suckiness of it, but also stuck in the MS because of it.

The other night I was whining to Michael over a weekday glass of wine, just expressing my frustrating in feeling so stuck despite working so hard to do all the “right” things. To continue doing the things I know will help, and do help regardless of how quickly I see the results.

Without knowing this, I had a dear dear friend say to me the following morning, “I feel like you’re stuck in an unfair spot, and also a pandemic.” And those were some of the most validating words I had heard in a while, and she was right, things do feel unfair; not only for me but for most everybody I spend time with and I talk to.

So, without boring you with the details and specifics, I will say that life has been throwing me some curve balls lately and the extra, out of my control stressors, have been piling up. Along with these things, comes into play my own mental health issues ( I plan to create a post about anxiety and depression in the future). My depression is at an all time low, that of which I feel I have not experienced since high school. And my anxiety feels pretty unmanageable to the point where I do have a hard time veering even slightly from my quarantine routine.

So, couple all of that with MS. Which causes which?! Is my stress made worse by my MS or is my MS exacerbated by the stress? The simple answer is both.

That being said, how do I navigate the suck that is 2020? How do I distinguish what it is that is causing that suck to suck so much? How do I manage being stuck in the suck?

I am still figuring that out. I am still working hard and challenging myself daily to find new ways to cope, or revisiting old habits that have aided me in the past.

Other than to sit in that suck, I suggest noticing it; what sucks? Why does it suck? And what does that bring up for you. No judgment. No shame. And name that suck for yourself.
Name that emotion (if you need help I have a great diagram!).
And know, please, please, please know you are not alone in the suck. Not one bit, not right now.

Sorry, I went on a therapy tangent there. Anyways, the things I continue to think about during this version of my life is how to work to continue on this track of feeling well, doing well and just being well.

For starters, I plan to absolutely keep working on running (right Michael, Ryan and Rosie? Those Friday glasses of wine make it worth it). I will keep teaching yoga as much, and as passionately as possible (now booking private classes if you’re interested). I will practice my own yoga independently (really enjoying that rag doll). And, I will continue to meal prep and work on some new fall recipes (thank god Michael is no longer allergic to butternut squash…I don’t think…). I will work to cultivate, build and cherish so many, many family and friend relationships. One thing I will say about this pandemic is that it has reminded me and showed me what and who is important and how to show and prioritize that importance. I have re-evaluated meaningfulness when it comes to social situations; and while wine is often the center of gatherings, so is conversation, and good conversation. Games are becoming a renewed pastime and stress reliever, as I have dig into the crevices of my memory and found my Mario skills, or lack thereof.

I will continue to take time to sit in stillness, or even just sit in presence and focus my attention on one single thing at a time, what a concept, huh?

Slowly, carefully bring your hands back to the mat in front of your face. Bringing your feet back to hips distance apart, rounding through your spine come up to stand. Reach up, look up. Inhale through your nose, sighing it out your mouth. Bring your hands to heart center and open your eyes.

• 

What is self-care in the time of a pandemic? What even are coping skills anymore? (I say as I drink a week day glass of wine.) These are the things I have been thinking about lately.

Up through February I planned activities and routines and structured my days, and my life around certain things that I considered “self-care.” For example, a weekly bubble bath, an extra glass of wine, waking up early to take a yoga class, even the occasional retail therapy trip; all of these things would be ways to manage stress, or curb the constant anxiety I am prone to.

But today reminded me, or I suppose validated me. today I spent some time thinking, more time than usual, and I had an “aha” moment. I went about my morning as usual and carried on with work, but I was sad. Today, for whatever reason (I have stopped trying to figure out the algorithm that is my emotional stability, or lack thereof) I was sad, very, very sad and the first thing I thought to do was to go to Target. So, I did. My work day ended and I put on my shoes, since there is not much separation between professional and personal life when I work from home, and I got in the car. I put on some Lady Gaga, quite loudly, and drove the short distance to the store. It wasn’t a completely useless trip, I had a couple specifics I needed, but I wandered for a while. I wandered aimlessly, up and down the aisles, putting quite a few things in my cart; and taking quite a few things out. I looked at fall décor, and bathroom décor, and bedding, and lots of kitchen items, and smelled many candles; I even looked at groceries and snacks. I ended up settling on a mat for cat litter since Binx is quite messy, a new front door mat and some fall décor (owning a home is fun, and expensive).

Anyway, that’s is fun for me, browsing, wandering, spending; it is all reasonably cathartic, usually. But, not today. Today my coping skill didn’t work. I got back in the car and did not feel any rush of endorphins. I did not feel happy despite liking the things I purchased. And, I wanted more. Not more in a materialistic sense, but more in a coping sense.

So, I went home, arranged my new things and planned dinner. Cooking! Yes, that will help.

Nope. Wine? Only momentarily. Ok, ok, I’ll take a bath then.

But at what point do I stop and actually feel, and deal? Currently life is a daily game of do we feel today, or do we deal today? Coping skills, are no longer ways to cope. Coping skills have become the norm, have become a baseline requirement for functioning.

How do I manage, now? How do we manage, now? I absolutely do not have an answer for that. For the time being I will keep running with lovely people (we’re up to about 2.5 miles), I will resume teaching yoga on my terms, and I will write. I will write and write, and write.

Happy pandemic life to all, I wish you all the best, and all the health and all the coping.