Overload…

I can only begin this post by stating I am aware of the privileges I have as a white middle class woman. I recognize my experience is different from that of a person of color. In fact, I recognize my experience is different from that of a person with a visible disability, instead of my invisible illness. In societal terms I am, within the boundaries set forth for women, acceptable, and to a large point, welcome.

So I can only begin to imagine the stress my less welcomed fellow Americans are undergoing right now. I can only extrapolate from my own sense of powerlessness the helplessness they must be feeling. I share in their anger and dismay but I cannot fully understand how they feel.

I can only hope there is something I can do to help put an end to this madness.

There’s an added complexity for me, one that is the underlying cause of this post. My invisible illnesses are made significantly worse by emotional stress. I am literally making myself sick reading about everything that is going on with my beloved country every day. So I need to strike a balance between knowing what is happening so that I can find ways to help and giving myself space to process so I don’t make myself sicker. (Again, I recognize that being able to give myself that space is – in and of itself – a privilege.)

This is a concern I have heard repeated in the SpoonieSphere. Many spoonies want to help, want to make a difference, but are experiencing this same drain on their already limited resources. Many can’t march with protests, most don’t have extra money to donate. What are the best ways to help while still “putting on our oxygen masks first”?

Let’s begin by choosing some reputable news sources that come out once or twice a week. For example, Code Switch by NPR has been recommended along with New York Times’ The Daily . These two podcasts provide fairly thorough reporting on what’s happening in the U.S. You can also give British papers a read through, I find the U.K.’s take on our happenings to be less biased one way or another.

Second, there are some things we can do at home to help support the fight against hate.

  1. You can stand against hate in social media. Confront those who spew hate, and loudly disavow it on your social platforms. Be one of the voices condemning it.
  2. You can support your local marches and vigils, even if you can’t attend. Perhaps you can make a few signs and give them to the organizers to hand out to people, or you can use your social network to enhance the message of the protest.
  3. Write to your representatives in the government. Let them know you stand against racism and you want them to stand against it to. Write to everyone who represents you. You can do it in email, through the post, or via petitions.
  4. Personally message the people you know who are targets of these attacks. Send them a loving and supportive text or email or card. Call them. Let them know you are a member of their community who loves them and wants them to be there.

There are things we spoonies can do without making ourselves sick and we should do them. I don’t know about you but sitting around doing nothing is untenable for me.

Beset…

Like many spoonies I spend a lot of my time trying not to look sick. It’s not because I don’t trust you to be sympathetic and supportive, it’s mostly because I get sick of my symptoms and want to be able to enjoy whatever event I am attending without paying too much lip service to them.

However, they are always there, hiding in the background and working hard to pull my attention away from your story, the movie, or the amazing meal you cooked. I have to chastise them like poorly behaved toddlers to keep them in line.

Which is why I hate getting sick on top of being chronically ill. That nasty, achy, flu-like, feeling you get with a fever is a daily occurrence thanks to my Fibromyalgia, so when I have an actual fever things suck.

It begins with me feeling like my body is filled with jagged pieces of glass when I move. Everything hurts. Then when I lie still everything hurts. (It turns out lying on jagged pieces of glass isn’t pleasant). Then I will get cold, really cold, deep freezer cold, but the second I pull up the blankets I am boiling hot. Lobster death hot.

At this point I will recognize something else is going on. I will take my temperature, it will be high. I will feel completely and irrationally betrayed by this additional invasion of my already sick body. Shouldn’t I get some kind of “Get of the flu free” card? I have a chronic daily illness, well two actually, shouldn’t that make my body a no fly zone for summer colds, winter flus, and the bacterial crap that hovers around polite society waiting to turn us all into wretched piles of indiscreet bodily functions?

I have become incapable of pushing through colds. I guess it’s because my daily push is so much work that adding the extra layer of suck renders me a wibbly wobbly mess. Every single thing becomes a personal affront to me. I cannot handle the smallest difficulty.

So today, on day two of fever and suck, I feel beset by my illnesses, both chronic and extra. I feel like a presentation exhibit for “What can go wrong with the human body”.

 

Spoonie Box?

I came across this subscription service for Spoonies the other day. I am not sure how I feel about a business profiting off of chronically ill patients but I am also intrigued and wondering if this could be a useful support tool.

My concern is based on my past experience with subscription boxes. They usually consist of one or maybe two relatively nice interesting things you might like but don’t need and a bunch of smaller crap that no one needs. Ever.

If this follows the same pattern than I’m not sure it would be a worthwhile. Often in Spoonie households money is tight, so making sure you are getting the biggest bang out of every buck is important. This box is $39.99 a month, which is a lot to spend when you aren’t sure what you are getting.

However, the business was started by a Spoonie and they claim they are constantly searching for new and useful tools for managing chronic pain so it’s possible this service could be a way to easily be introduced to new-to-market items that might help manage our spoons.

What do you think? Good idea? Bad idea? Don’t care show me some T&A?