I’m not talking about literal changing seasons, I’m talking about myself. This picture just happened to be from a work trip I took this last week to a different state that is changing to Spring.
As my life changes and twists and turns, it’s been full of complicated grief. My own physical health is going downhill. I can pretend all I want to as I peruse hiking pants for days with that nagging feeling in my stomach saying that that season is probably ending. I can think about buying a different car that will accommodate my wheelchair better knowing my gut instinct screams that I don’t know how much longer I’ll be driving.
When I started writing this blog, I really didn’t know what my diagnoses were. Now I know. While no one in my life really knows them all, some are more terrifying than others. My friend locally who would be here in a heartbeat to help with my medical stuff once we reconnected in the summer of 2019 and told her after not seeing each other for a handful of years, died of Covid. She would surprise me at the infusion center as she managed to care enough to memorize my infusion schedule. My other dear friend is sick with a little known disease called myalgic encephalomyelitis. We have had an amazing messaging conversation for 2 years. She’s recently declined considerably and as hard as it is for me, I know it’s harder for her.
When you choose to love a friend with chronic illnesses that are rare, severe, numerous, etc, you run the risk of watching them fade away. As I have watched chronically ill friends fade away, I watch myself fade away as basic tasks get harder and harder.
I’d love to blame it on being lazy or having a new job or not doing enough of this or that to be all I can for my health. I know it isn’t true. When more imaging and lab work tests come back positive in a negative direction, I can’t refute science. I can’t ignore what my body is saying.
I’ve had to protect my heart as it protects my energy. I’ve asked to have conversations with a handful of people in my life who I care about as my own needs change. Some have happened in quick haste that were quite rewarding as a conversation is a conversation. I know that sometimes the difficult ones can be scary. I told a friend that I have personally learned the power of listening and saying I am sorry or be able to explain myself.
I have dubbed a term “pathological giver” of myself, which means I give to the detriment of myself. I give until I’m so empty and depleted that when I wave my own white flag of “help”, my giving wasn’t a gift as it taught people that my own value is in what I can give. I’m not talking about material things. I have given of my time and emotional well-being that made my physical symptoms worse—a lot worse. That was my own issue in not saying no when I really should have. . I don’t believe in giving up on people. I believe relationships are made better by explaining and sometimes taking a short break. If I end up completely depleted from ignoring my own needs, I would want to give up on myself. I’m worth it.
In that being said, chronic illness, especially disabling ones have offered me some new opportunities and while I’m not exactly sure what that means yet, I can call myself a commissioned artist, I have a very part time job where I am able to support patients with complex disease states just as myself. Well, perhaps not the exact same diagnoses, but patients with multiple specialists, understand what it means to have infusions once or more a week, know the pain of shivering so hard in the middle of the night that it’s the most painful symptom of diseases like ours. They would know when I say “I have appointments with 3 specialists this week and a CT scan and the thought of it all is exhausting”.
Some people over the past few years have gone the opposite direction. Others have come towards me. I’m working to focus on those coming forward versus those that left. My trauma brain makes me want to focus on the ones that are gone. My healthy coping brain focuses on the enriching relationships I’ve gained. And while some are gone through death and others are fading through illness, I get it. It’s me too.
I continue to eat healthy. I’m exercising in a much different way. I engage in joyful activities knowing it will take me a couple days to recover. I’m being honest with my medical providers and trying to be so with myself.
Amazing opportunities have come my direction. Right now it’s figuring out if I can pursue them or do I make my life about taking care of my basic needs while throwing in some soul fulfilling activities. Being a paid artist has been a dream I’ve had since I was in my teens. So I guess it’s more about focusing on what’s feasible given my givens.
For now, I’m resting, rejuvenating, stretching, eating lots of vegetables, enjoying the sun from my backyard, and fantasizing about taking a birthday trip as fantasies can make you feel alive in a body that is progressively becoming more sick and disabled as it keeps the mind stimulated and can think back to the more carefree days when traveling wasn’t much of a thought.