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.

The Skills I have To Think About

Recently, I was reminded that over ten years ago now, I was put in a place where I needed to have a strong sense of myself, of my body and of what it tells me. I have honed in on that skill and have learned to trust it and to trust myself. This skill has come about to protect my physical health. However, that is not always the easiest thing to do, or to want to do.

I have also developed a skill where I am able to pretend that I feel okay, or even good, when in reality my legs are failing me and I cannot comprehend a simple sentence. That skill was created to preserve my mental health.

And these are the things I have to think about; when to use which skill and how long do I go before I talk about how I am feeling, or in the case of MS, not feeling.

It is November 18 and I had hoped to post sooner, but life happens. And a lot has happened in my life in the past 6 months that I am now able to reflect on. I can see how the craziness and business of adulthood has impacted me. Throughout the summer I had two amazing friends get married, so that meant bridal showers and bachelorette parties and planning and practicing and dressing up and dancing and eating and so much celebration.

Along with the amazing festivities came a new-ish relationship, two overactive, but wonderful, cats, a lovely vacation with my mother, moving and all around adulthood. Even just happily reminiscing makes me tired.

In participating in all of these things, I was and continue to be incredibly grateful to have been able to experience each and every breathtaking moment. However, this is where the skill of listening comes into play. Thank God I have had ten years to perfect this, or else the last six months would have ended in disaster. When there were things to do on a Saturday, it was guaranteed Friday and Sunday we’re left open for rest and recovery. And when there were events on Sundays, you can bet the rest of the week I had no plans, or no responsibilities.

This sounds like I would be planning accordingly to accommodate an insane hangover, that one can assume would come along with so much excitement. Nope. That is not the type of recovery I am talking about (though there may have been extra wine consumed here and there). My recovery involves more than greasy food and some Advil. My recovery involves limited walking to ensure the weakness in my legs subsides enough to return to work on Monday. My recovery involves healthy foods, to confirm I will be able to eat comfortably for the rest of the week. And my recovery means warm baths and judgment free naps in order to have my vision cooperate and my cognitive abilities up to par.

But I don’t share this for pity. I write this to express things I cannot otherwise say. I write this to vocalize the things I have to think about.

Don’t get me wrong, there are and certainly were bad days during all of the fun (I actually believe I had my first flare up in four years). But as I mentioned before, I have also worked to improve upon my skill of pretending I feel good. This skill is more for my benefit than for others. If I pretend I feel good then I don’t have to go home, and I don’t have to miss out on these life things. When I pretend I feel good I have fun and I am happy, opposed to sitting home bored watching another murder show, or learning how to make another dish on Food Network, that I can guarantee I’ll never make in my real life.

Actually, I am writing about this because for the first time in a long time, a couple weeks ago I was unable to pretend that I felt good any longer and I had to leave; I went home to watch a favorite show to help preserve what I could of my sanity. My wonderful, talented boyfriend had a show and I wanted to hang out after with him and some friends but I could not. I could not bring myself to do it. I did not feel well and my brain, right away entered into some weird emotional power struggle thinking: do I pretend versus do I listen to my body. Listening won, I went home early and nobody was upset, except for me. So I challenged myself and I was honest. I was honest with myself and with others.

In this honesty, I realized, it is okay, and I do not have to do it all, despite feeling a need to be present at everything all the time. This moment, or the day following it since it was very late and very much past my bedtime, reminded me of lessons I learned ten years ago when I was 18 and diagnosed with MS.

I am a priority as much as anybody else in my life. I am allowed to care for and to protect my health, emotional and physical, and I am entitled to do so in whatever means necessary. So, as I approach my 29^th year I am grateful to go into it inspired to return to my version of self-care. I am excited to return to my own practices that feel right for me, regardless of what others think or are doing. I am read to practice saying not and putting what I want, or need, first on occasion.

I admire my friends for running, especially in the snow, but I don’t have to do that just because they do, in fact cardio makes me angry. I am in awe of my friends for following their dreams, but I don’t have to have the same dreams, though I once thought I did. I am grateful for family for following whatever path they need to in order to have their needs met, but I don’t have to walk that path with them, which does not mean I do not support them. And I am honored to have encouragement in my relationship, but I know I cannot reciprocate if I do not cheer myself on as well.

So, it took a few bad days to remember what brings me peace and what brings me sanity. It took some phone calls to the doctor and some unwanted rest days to bring me back to a place of contentment and inspiration. And it took my honesty and my perception of what I felt was admitting defeat to learn that it is okay to rest, and it is okay to ask for help. Moving forward I plan to return to rest and to return to what I know will create a place for me that allows for continued listening to my body so that I don’t have to pretend I am okay, I will actually be okay and feel good.