Representation

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Something I’ve noticed, as I surfed around the internet looking at blogs and websites, especially in the working from home, crafty diy and journaling communities, is that there seems to be a very common “type.”

I want to stop for a moment here, only one sentence in, to specify that this trend is what *I* have noticed up until *now* which is mid-June 2017.  This very well could change tomorrow!

I’ve noticed that these individuals are mostly women, mostly stay at home mom’s.  These women are often very conservative, living conservative Christian lives, often with little to no financial worries.

Now let me stop again to say this: If this is your preferred way of life, if this is your belief, than I am truly happy for you.  I wish you all the best and while that type of lifestyle is not for me, if it is for you then more power to you!

My point is that there is very little representation in this community for individuals like me.  Not Christian.  No children.  Very liberal.  I am Pagan.  My children all have four legs.  I am agender and part of the LGBTQIA+ community.  I have fibromayglia and I desire to work from home while still keeping my current standard of living, or bettering it.

And so here I am!  I remember several times over the last few years, trying to find blogs from people who have fibro and only finding a couple, if that.  So then I wanted to find blogs by people who did things like make their own soaps and cleaners  and while I found a couple blogs most of the posts were regarding their family life and how they want to be the best Christian wife and mother ever.  Well I wanted a blog that I could regularly follow.  So I went and looked for some crafty diy ones.  Same thing.  I’d find one or two but they were always ones that I had so much different from them I wouldn’t be able to regularly enjoy it.  And now most recently I’ve had the same with searching for journaling, paper crafting and bullet journaling blogs.  I find blogs with posts I love, but the rest of the blog is about being a Christian stay at home mom.  I’ve even been having this problem with motivational/inspirational Twitter accounts.  I have yet to find one that doesn’t also happen to be Christian.

Well I’m here to tell you that you can be motivational, you can be a blogger, a journaler, a crafty diy’er, a stay at home mom, or whatever the fuck you want without being Christian!  Without rolling in money!  Without having children!  And hopefully my online presence (as it becomes more regular) can provide, for someone else, what I have been looking for all these years.

So at any rate that’s that.  There IS a liberal part of this community.  There IS a LGBTQIA+ part of this community.  There IS a Pagan part of this community!

Allowing yourself to feel bad

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When you are, or have been, chronically ill for a period of time, you become used to feeling ill.  Sick.  Tired.  In pain.  Just plain bad.  It becomes the norm.  You learn how to live with it, you develop strategies to push past it, accept it, work around it.  So that becomes normal.  So your good days slowly become these days; the days you’re able to push past, medicate enough, (whether it’s prescription meds, caffeine, etc) become standard.  They become your good days.  So long as you’re able to get up and do some of your stuff it’s a good day.

But then you feel good about it.  You’re still able to work, you’re still engaging in self care activities, you’re still able to go out and shop and every now and again go out with friends.  But then one day you’re more tired than usual.  You’re in more pain.  Your appetite is weird.  But you push through and go about your day.  Then the next day comes… You can barely move… You’re in incredible pain…You’re foggy…You can’t focus on anything… You know that you will be spending the day in bed.

And why?  Because you didn’t let yourself be sick.  You should have taken it easy the day before, maybe medicated more, maybe do some other self care activity to help you keep as many spoons as possible.  But because you didn’t now you’re really down for the count that day, and possibly the next.

This is why it is vitally important that us spoonies let ourselves be sick when we need to.  This is also why it’s important to learn our bodies, to learn the cost and toll certain activities takes from us, so we know what we can do and to know how we’re going to have to alter plans for the rest of the day, the next day, and so forth.

For me there are a handful of things I consider:

  • How physically strenuous is it?
    • Will I need to be physical for a length of time?
    • Does it involve heavy lifting?
  • Is the place accessible?
    • Is there an elevator?  If not how many stairs will I need to climb?
    • What kind of seating will be available?
    • Is there a restroom near by?
  • What is the weather like?
    • Will I need to bring a jacket? Maybe an umbrella?
    • Will it be hot or humid?  Cool or cold?  Damp?
  • Will there be food there?
    • If so is it safe for me to eat?
    • If not can I eat before or after?  How will that affect my day if I need to?
  • How long will this event/activity last?
    • Will I need to bring meds?
    • If so will there be water available for me to take them?
    • Will my sleep be affected?
    • Is it running late?  If so can I caffeinate?
    • If I need to caffeinate do I need to be up early the next day?
  • Will I be able to leave early if I need to?
    • Can I drive myself?
    • Will my leaving early be disruptive?
    • Would my leaving early make things awkward with anyone?
    • Will anyone there demand specific reasons of my leaving early?

At any rate, I feel like I’ve gotten off track, but really this is one of the major reasons we need to allow ourselves to be sick, stay home, rest, etc when we need to.  For those of us with invisible illnesses (or any other chronic illness) there are innumerable factors we must consider.  Consider for how the activity will affect the rest of our day and the next day, and if we don’t take that sick day?  We can throw most if not all other activities out the window for at least a day or two.

Readers, take that sick day.  Not only do you deserve it but it is your right.