It’s been 18 years

It’s been 18 years.

Eighteen years since my official diagnosis of MS. I’ve gathered diagnoses and acronyms since then. Most people collect albums, or knickknacks but not me, I collect diseases and disorders.

It’s expected or assumed that with this much illness under my belt it must be fine, I must be okay because hey, look at me, I continue to show up. But, through the years I’ve learned so much about existing, about illness, about mental health and about how to show up (or not show up) for myself and for my illness. Some lessons learned the hard way, don’t get me wrong. And others learned through unintentional strength and forced resilience.

The culmination of all my diagnoses has taught me one of the most challenging insights, both physically and mentally; that is importance of continually showing up for myself. This manifests in many ways and how I show up changes based on the day, and sometimes the hour. Without playing the role of martyr, I will say nobody will be there for me the way I need moment to moment and that is no fault of their own. However, nobody can be there moment to moment if I am not there for myself. If I am unable to pause, assess my wellbeing and identify my needs, I am then in turn unable to express this to anybody else. If I don’t intentionally, and often, review my task list, my goals and my own abilities, I then cannot be vulnerable in sharing with others my challenges, my needs or my boundaries.

Constantly having to think about effort each day will require is very often daunting, and most days I do not want to think that much, let alone think about myself that much. But, in growing up with chronic illness I find the days I don’t do this I struggle more with isolation or loneliness, and my mental health slips into a decline.

All that being said, another lesson learned is to have a plan, and a backup plan, and a back up to the back up plan. Where I struggle the most with this one is that many of my diagnoses require multiple plans and those plans don’t always mesh with each other. On a good day I can assess and establish two or three plans based on my physical abilities for the day, considering pain level, fatigue level, dizziness or nausea and constantly checking the weather to accommodate for temperature dysregulation and a need for comfort. But on a rough day (because yes they happen, and they happen frequently) I have to account for my mental health as well. These other plans have to include extra steps including “oh shit, where did I leave my meds, did the timer go off and did I already take them,” what system is in place to make the routine make sense “WHERE DID MY SHOES GO?”

But, wait when we get there my thought loops will likely include, but are not limited to: can I drive separate, what if they’re annoyed by me, what if I’m annoyed by myself, can I find a bathroom, ugh germs, did someone just cough, I need to text my bff, I can’t text her, where are the kids, is that person going to kidnap them, where is the little one, did I lock my car, I don’t have anything in there worth stealing, I’m anxious, I’m uncomfy, my legs hurt, I should sit down, I can’t sit down who will help me up, did I drink my electrolyte, when I stand up again it will make me dizzy, I should just stay standing and lean on something, but nobody understands, adulting is hard, being perpetually ill is hard, sick sucks, I don’t feel well but do I ever actually feel well, when was the last time I actually did feel well, I think I was 15.

It’s hard, it’s all hard, and even good days come with their own levels of hard and these lessons are just two pieces of a the bigger spoonie puzzle, leading to a third lesson, but not a final lesson by any stretch of the word.

This lesson being that with all this time, I have been able to learn my body, my mind and my needs and have been able to really listen to and trust myself. Sure, I have days where I hear myself but I disregard every rational thought and every productive thing and just shut down, crash out or bed rot. But in learning to trust myself I know I can take those days, and be sure not to live there. For every bad day there is, I know there will be more neutral or good days. And on the neutral or good days I hear my needs and I honor them. I move slower, I give myself comforting and nourishing foods, I take rest and I connect with others; I find movement that makes sense and I validate my suffering. Some days require a full battery, but with a million plans in place I’ve curated a life that can go on with lower battery power- I will never be the energizer bunny, but I will never regret choosing each day’s plan based on what I need in the moment.

So, in my 18 years since my first official diagnosis I have come to appreciate my slow days, I have come to find humor in my doom piles, and I have come to learn that an impulsive haircut will never change my life but it sure will give me the dopamine i need to get me through a particularly rough flare up.

These Are The Things I’ve Thought About Lately

An update on previous thoughts:

Recently I have had multiple people share with me how “strong” I am, or how hard I am working and the pride I should feel for living in such a way that I continue to push, and to fight, and to try, and to work, and to exist with Multiple Sclerosis, and other chronic illness or conditions, some of which I am in the process of being tested for.

I argued these sentiments with loving kindness (spoken like a true therapist).

I don’t necessary feel proud of all of these reasons, because I don’t have a choice but to live with myself, diseases and all. I don’t have a choice but to wake up, put on my shoes and go to work no matter how heavy my legs feel, how blurry my vision is, or how numb my torso is. I don’t have a choice but to attend brunches and dinners with friends and family, or to play a game with my kids, or to watch a few minutes of a show with my husband, even though he likes staying up late and I much prefer Netflix in bed at 9 (who am I kidding, I prefer bedtime at 8). I don’t feel I have a choice in going for a walk, or running to the store, even when I am so nauseas even the slightest movement is treacherous. I have never seen MS as a choice. I have never seen my own body as something to be proud of.

For me, I did not have the luxury of choosing which chronic illness(es) I have, or choosing which medication would make life more manageable for me. I did not have a choice in how this disease took away my eye sight or my confidence in living my daily life. So again, for me, I did not have a choice in continuing to do the things that allow me some sense of sanity and some semblance of normalcy. I don’t have a choice but to go to work when I am dizzy, because I don’t want to depend on another person solely to support me, to house me, and to feed me (though I would not argue someone making all of my meals). I don’t have a choice to turn down social events, because without them I would feel isolated, sad and lost. I don’t have a choice but to stay up late on occasion for my kids or my husband because they did not ask for me to be sick; I can risk a slow moving day following a night of stomping like a dinosaur, or hearing about Magic the Gathering. I don’t have a choice but to attend yoga, or to ride a bike, or to walk when it’s nice out, because if I don’t I fear I won’t be able to do those things again.

So, when the kind, caring, supportive people in my life tell me I should be proud, I smile and I am grateful. I smile and know I should be proud, but that if I get caught up in that pride, I slip. I get complacent and I allow myself to wallow in self-pity, dread and loneliness.

Yes, I can and will acknowledge the hard work that comes with life, and on top of that the hard work that comes with life with chronic illness. But, I will not be proud of living with MS. I will be proud of who I am despite MS.

I Don’t Want My Body Back As A Mother

In talking with mamas, many, if not all, have said how glad they were to get their bodies back. Whether it be following delivery, after breast feeding or when they finally slept again.

Whatever the case may be, it has been the same sentiment about wanting to feel themselves again, or wanting control in some aspect of their bodily autonomy. Or, even wanting to exist in what feels familiar.

Honestly, that is not the case for me at all. While I am beginning to feel myself again; my pregnant and healing body was the most in control and predictable I’ve felt since I was sixteen years old. The moment I started to feel the chaos and discomfort of pregnancy was a moment I felt relief. Not just the emotional relief of finally reaching a goal, but a physical relief that feels hard to comprehend myself, let alone to put words to.

In my day to day, at baseline, I am uncomfortable and unwell.

While pregnant, I also felt uncomfortable and unwell, but with purpose. Those nine months, and the four (so far) following, were a time of the most medically appropriate and cooperative my body has been. Each symptom had a reason and every hard day was moving towards a desirable outcome. And though this sentence, and sentiment as a whole feels very scientific, I can attest to it being the most emotionally freeing experience I have had in a long time.

Do not get me wrong my pregnancy did not come without stress, anxiety and a lot of depressive moments (my husband can back me up here). However, all of those things, including sleepless nights, pain, nausea, anemia, etc. felt manageable with an end in sight. Even healing from a major invasive surgery felt so minimal compared to my indefinite MS filled day to day. The key word being indefinite.

How else can I describe this?

I don’t want my body back. I don’t want to return to my constant fight, my constant tug-o-war between health and disease. A true variation and reminder of my own of dis-ease.

But I’ll do it, I will always do it. And now even more so. Now, I will always show up. I will drag myself across the hall at 2 am knowing I won’t be able to fall back asleep. I will trek the stairs for the 700th time knowing this one might hurt. And I will eat my 6th peppermint in two hours knowing it will only subside the nausea while I rock back and forth and up and down for another half hour. I will always do it for that smile.

I will always do it because that is who I am. I can be isolated, bored and angry and not feel well. Or, I can live through some of my goals and things I enjoy while not feeling well.

All that being said…

No, I absolutely do not want my body back. Yes, I am curious what this body will do now as a mother.

I Got Another Tattoo, and These Are The Things I Thought About

I got a tattoo today.

I got a big tattoo today to cover up a much smaller, 10 year old tattoo that I was less than proud of. Getting this tattoo required stillness. A stillness I was not pleased to participate in. believe me, I wiggled and whined a bit and fought this need to be calm. But, in the end, hours later, I was thrilled with this work of art, the meaning behind it and the fact that I could be proud again. This tattoo will continue to require stillness as I listen to my body and observe the healing process; granted, it will also be a physical and visible healing process.

I got a tattoo today and it knocked me flat on my ass. Due to my illness, I often fall flat on my ass as far as physical health symptoms are concerns, however, this pain and the aftershock that accompanied it was completely of my own accord. I willingly signed up for, scheduled and agreed to this discomfort, this stillness.

And while I lie still, I recognize I have not allowed myself to do so for a long, very long time. In fact, I actively avoid stillness of any kind. So, what am I truly avoiding? (that is probably not something that will be answered in one blog)

Weeks ago, to be honest, more like months ago, I noticed my mental health had been slipping. I had been noticing a slow, also at times rapid, decline in my outlook, attitude and my actions and thoughts towards myself and others. I would blame the chaos that is my life, or the disconnection I was feeling with friends and family, or even false resentments I was holding on to for dear life. But those things, those imaginary stories, were not the perpetrators of my downward spiral; I was not the victim. I was to blame. (along with some other factors such as insane hormones, chronic illness and various miscellaneous things I cannot even begin to identify.)

However, I realize I was only perpetuating the cycle by blaming, by distracting and by continuing to fill my schedule with things lacking meaning. I was becoming a victim of my own avoidance.

This tattoo, though the meaning is special, the physical act of getting it forced me to decline two visits with dear family members. This tattoo, as wanted as it was, caused me to sit on my couch and listen. This tattoo, as gorgeous as it is has reminded me of a valuable concept; be still, be present, and be there for myself. In having to make the decision to rest, I felt an incredible amount of guilt for not seeing my cousin and not having met his girlfriend yet. I texted a friend about it and she said, “gotta put your needs and health first!” And she is right, she is more than right and I needed a visible reminder of that. I think I needed that reminder for my day to day life, not just in this moment following a tattoo.

I have been having a hard time coming up with a topic for my blog the last couple of weeks. I have a lot of saved documents and notes in my phone consisting of run on sentences, half-finished thoughts and very poor grammar, but today, in getting this reminder I felt more motivated. It’s kind of ironic that something I was planning for so long served as motivation for something I was struggling with for so long.

Flash forward to tomorrow. It is now Sunday and I am feeling a sense of motivation I have not felt in a while. I woke up early and started my day by cooking brunch for a dear old friend. I felt good, I feel good. Cooking is inspiring to me, I planned meals for the week, I planned chores for the day and I made sure to schedule in time for myself, for stillness. I realize that the disconnection I feel has more to do with a disconnection from myself than it does a disconnection from others. I fit people in, I manage to have time to see friends and to see family. Though I cannot see all the people I love as often as I would like, I see them often enough to still be aware of the ins and outs of their days. A good friend bought a house, two are on vacation, two others still are spending time with newborns and another is learning who she is and taking time to do so. And many still reaching milestones and living their own best lives. I am proud of all of them all I am honored to know each of them, and that is just it; I do know them. I do connect regularly, so I have no reason to feel disconnected other than I am not sure of who it is they know.

I am unable to connect with them fully until I connect with myself. As I have probably shared a thousand times in my blog, routine will return that connection. A physical and a spiritual routine to better my health and overall well-being. My mother joined a CSA and I probably did not express my gratitude well enough to her for getting the family share so I can benefit as well. I am glad to start cooking better and having an excuse to see her. I was frivolous and got an apple watch, and I am glad to be held accountable and to see progress in working towards my goals. I am enjoying the benefits of stillness and am excited to return to the place of peace I know I can achieve if I just take that time for me, and take that time to spend with Michael without rushing, without planning and without distractions. I am excited that this tattoo, in more ways than one has and will continue to remind me to face the sun and grow towards the light.