Tag: health

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. 

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.