Doing the Thing ( Having the Energy to Function with An AutoImmune Disorder)

What are your first thoughts when you wake up? Are they frantic, measured? Perhaps, the first thoughts go to family in the home, their whereabouts, did Eric make it to school…What are YOUR first thoughts, as someone not living with a silent illness?

When I first open my eyes, my first thought is cataloging what has been hurt in my sleep. As I lie there, I let my senses extend outward to my hands and feet. How badly do they hurt? Before I catalogue my nightmares (something my medications love to exacerbate) I have to be sure that I can get through my day.

As you lie under the covers, maybe with a partner, maybe alone, what comes next? Do you catalog what needs to be done for the day, what you’ve accomplished already? Are you excited? What are your worries as you curl your toes, gearing up to get out of bed?

I tell my body a story, of what it’s meant to do, of what I am capable. As much as I pray to God, I address the vessel I am in.

What feels good today?

What is hurting you and can we live with it?

The soul is one entity, my body its faithful friend. This friend gets hurt a lot, she can’t help it. She was affected by trauma that is ongoing, rattles her.

Before my feet hit the floor, I look over at my partner or put eyes on him in the room somewhere. Maybe it’s important to focus on what you want, first thing in the morning. I realize how badly I want us to be happy, to lead fairly normal lives. I understand every morning, how difficult it is to have that dream when your life is affected by an illness.

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In the United States, healthcare is considered a privilege. That to me is strange because we are all mortal beings someday destined to die. One day something will happen, an accident, an illness, that will put us down but here in the States we don’t act like it. We act as if the bodies we walk around in will carry us forever. I’ve understood since I was twelve years old, that these bodies are something that will eventually need care, that eventually falls apart.

Your feet are on the floor, what’s the next step in your day? Do you have work in a few hours, kids to prepare breakfast for? Do you say what your intentions are for the day?

I try to be in the moment, ask my vessel what it’s capable of for the day. I believe everyone should ask themselves that question and ask it honestly. What I’ve learned living with a silent illness is that if you don’t evaluate what you can and can’t handle, it’ll bite you in the ass eventually. Whether it be something physical like a heart attack or something emotional like bursting into tears during a staff meeting, it’ll hit you.

A lot of the time, my body will respond, that it’s capable of four things. Not large things, mind you. It may involve me driving to a job, picking up my medication on the way home, making dinner and maybe crafting a bracelet.

After these four things are completed, I am immovable. I’ll feel this sense of lethargy wash over me and I know my disease is tugging on my vessel to calm down.

Other days I wake up and it’s two things. Those days are hard. Life keeps going despite your vessel telling you to stay put and recover your strength. You have to choose, your body makes you.

Able-bodied get that feeling too, I know y’all do. Even the strong can get weak after twelve-hour days in an emotionless state. Do you ever ask if you’re okay afterward, do you ask your children, your partner, your pet, how their day went, if anything bothered them through the day? Maybe that person won’t have the strength to answer in the moment but they’ll appreciate the effort.

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You’re out of bed now, toiletries taken care of, tea on the boil (coffee if you’re that type, no judgment). What is your next move? Are there people you need to help get ready for the day?

Are there people at work who depend on you?

What are your stakes?

In my head, as I drink my tea, I think about what I need to do and what I can do. Those two are not always the same and sometimes we get those two items confused. You need to eat, you need to breathe. You do not need to visit that friend, attend that wedding, you CAN call out of work if you’re sick. All the struggle will be waiting for you when you’re really ready for it.

Sometimes, emotional drainage is just as difficult to tear away from as physical responsibilities. Recently, I’ve had two deaths to contend with. I’m in an insurance battle with Medicaid, I’m barely talking to my family and I can’t afford to talk to a black therapist that understands me because he’s not in-network. Trust me, none of us black or brown folks want to have to code-switch to talk to a therapist, it sounds dumb because it is.

So whatever, emotional baggage you’ve got, treat it like the weight is a bag you can hold. How many full bags of bullshit and trauma are you carrying and can you carry it with everything else you’ve got going on in the day?

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Before you head out the door, before you “seize the day”, do you understand what your true goals are? Do you know what you need to gain from that day? How many things can you handle and are you ready to handle them? The world around us has trained us to neglect our vessel to appease the masses outside our doors. Similarly to the way Social Services and Medicaid neglect to cover all the sick and disenfranchised, we neglect to attend to our most basic physical and emotional needs because we've grown used to the discomfort.

Don’t let the world do that to you, especially if you’re someone with a silent illness. Before you start your day take that time to mentally address YOUR needs, before everyone else’s. Take a beat, a breath, a minute, heck take a whole thirty, if that’s what you need, to appreciate the fact that you are not a machine going through the motions. Your soul will love you for taking the time to choose yourself over a forced outing with friends or family.

I won’t lie to you and say rejecting invitations will come with a nice feeling, that there won’t be feelings of guilt. However, that is because in our society we are trained to think of ourselves as being only on other people’s time. We forget that our time with ourselves supersedes that, that it is up to us to accept these invitations and no one else. How much time do others set aside solely for you?

Tomorrow, when you wake up, take note. What are your first thoughts when you wake up and how many of those thoughts concern caring for your vessel and feeding your hungry soul? From there, armed with those thoughts, you can truly take the day for your own.