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Sunday, July 19, 2015

I had never considered myself a Spoonie..


To me Spoonies were always people who suffered far worse than I did. I just have migraines. Sure, in between those migraines I get episodes of auras, and yeah, it takes a day or so to recover from a migraine. Oh yeah, I get 3 or 4 a month, and when I am not actively having a migraine I often am impaired by the medication I take daily to ward off migraines. And, of course, when I have a migraine, I am incapacitated for a day or more. But I didn't believe that was enough for me to qualify as a Spoonie. They REALLY suffer.. 

Today I woke up with another migraine, and I was laying in the dark, listening to my kids playing out in the living room, I realized.. I am suffering, I do suffer, I am a Spoonie. 

Now for those of you who don't know what a Spoonie is, you are probably reading this with much confusing. So please, take a moment to visit Are You A Spoonie? I will give you a better idea of what I am talking about. TL:DR is that it is kinda an analagy to energy, healthy people have unlimited spoons (or energy) but chonically ill people have a certian number of spoons each day, and they have to carefully budget how they use those spoons, so as not to run out before the end of the day. It's a good analagy and I am making it sound silly, but really, go read it, it will only take a moment.. 

Did you read it? Good! Now back to me, because really, this post is about me ;) I have never identified as a Spoonie. I have always downplayed the role migraine plays in my life. Sure, if you are a friend of mine, you hear me bitch about them, I mean come on, they HURT! And they are inconvient. I try not to burden my friends too much from my complaning.. 

So why suddenly have I seen the spoon? Last night.. last night I went out with friends to a show. We had a thunderstorm, it was humid as hell, but we had a wonderful time watching the performers and just geneally being together. I did not drink heavily, I did not bang my head to heavy metal, and I did not tax myself in any way really. I also had a fairly peaceful day leading up to my outing, with the exception of kids being wound up from the storm. Yet, just going out with friends for a fun evening, was enough that I borrowed spoons from today (little did I know). 

Today, I have a migraine. You can't tell (or maybe you can) I am sitting in a dark room, writing this with unfocused eyes because my medicine makes my eyes all wonky. Thank goodness for touch typing in high school and a computer with spell checker. I am going to publish this as soon as I am done, but maybe when my head is clearer I will go back over it just ot make sure it makes sense. 

I don't want to stop going out with my friends, I don't want to become a hermit blogging from a dark room. But most days I mostly don't have enough spoons to do anything else. I want to be that mom who takes their kids to the park all the time.. But I don't haev enough spoons to deal with all my issues at the park (noise, light, smells, just to name a few) and Jack's (grass allergy, ezcema outbreaks, heat rash) together. I want to take my kids swimming, I want to take them everywhere they want to go, but I just can't. So if I say no to your invitation, most of the time it has little to do with you, and has everything to do with the conservation of spoons. 

It may seem odd to some that I don't suffer from migraine every day, but that I say I am a spoonie. But what they may not realize is, even on days when I am not in pain, I may be suffering from other migraine related symptoms, auras to those in the know. Plus, the daily medications I take to keep my migraines from being a daily thing, make me dizzy, sleepy, and make my vision blurry. So even on a day with zero pain, and zero aura, I am still not 100%. I can't remember the last time I was 100%. I don't even know what that feels like anymore. 

And maybe I am selfish for sometimes hoarding my spoons so that I can go out, with out my kids. So be it, I'll own it. But I have to be selfish. I don't get a lot of moments in my day without the kids. And while I love them, they are spoon stealers. 

So this is me, saying outloud, I am a Spoonie. I have chronic migraine, and it effects me every single day of my life. I work hard, and I miss out on things, I miss my friends, and I feel guilty that my kids don't get to do with the other kids do. And I just spent one spoon writing this post, and hopefully I have made at least one person understand what it means to be a Spoonie. 

1 comment:

Jano Howarth said...

So sorry! Sorry you have so much pain, and so many limitations on life fun, when you are still so young...
"Spoonie" is new to me, but I have reached that point in my life where I have a limit of daily spoons myself, so it is useful way to think about energy. And know other people who will benefit from this analogy. I bookmarked the spoonie reference link.
Great blog, and I have just found the homeschooling site...exploring!
Blessings. Power on... :)
Jano