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?

When I am in the throws of a really bad pain period, a week or more usually, I begin to feel less able to cope with life than I am when my pain is well managed. I get irritable, more depressed, and less desirous of activity and company. I also begin to feel anxious and desperate, certain that I’ve hit that point when the pain isn’t going to ebb and I’m going to descend deeper into the depths of pain induced despair.

This past week has been really bad. It might even have been really bad for longer than a week, I’m not sure, I have a tendency to lost track of time as my symptoms worsen. There’s been a hell of a series of weather fronts fucking around in my area and that usually sends me into a downward spiral.

This time, as I sank down into the sea of pain I normally float of top of throughout my day I found an unusual coping mechanism.

Fish.

It started with this guy:

I was lying in my room for yet another endless day and getting really down on myself for not being productive at anything so I grabbed an old copy of the Colorado Revised Statutes, ripped a page out of it, and began drawing. Soon I was painting over the drawing. As I painted I entered that state of “mental flow” where the world withdrew to the background and all that remained was me and this slightly sad, slightly desperate denizen of the deep. The pain receded into the back of my mind and I felt real relief for the first time in days.

So a few hours later I drew this:

He’s a funny guy, all swirls and thorns and angry red eyes. He’s trotting along, doing his thing, despite having no evolutionary tools that would make things easier. Once again I felt better. As I painted I was able to set aside my pain again, as I normally do. Only this time I was able to do it when I hurt too much to do it the way I normally do.

The next day, being no easier than the last rendered several sketches and this lovely lady:

Finally late last night I created this fish after I dreamed about him:

He’s worried. Worried I’ll run out of paper, or paints, or creativity, or maybe he’s worried that the world is going to end. Whichever, he has consumed my worries and taken them as his own, so I can go and sleep.

So apparently painting is one of my new coping skills. Do you have a non-medical coping skill you use during times of high pain levels?

Fake it till you make it. That’s the motto for today. After a week of chest colds and increasingly bad face and head pain I am pushing through. Ok, I am trying at least.

Last night ended somewhere around 6:30 am with me watching the first half of PBS Masterpiece’s Rebecca. Sleep wasn’t happening. Each time I would feel tired enough to turn out the light I would curl up and the pounding in my head would become the sole source of sensory input. It would pound and pound and pound and pound…

So instead of trying to find a way to sleep through my body’s version of a late night Blue Man Group performance I decided I would just watch something until I could not keep my eyes open.

As a person with photo and audio phobia at times like these it’s interesting to turn to the tv for distraction. I had to put the sound to a level that didn’t cause pain but also didn’t make me strain to hear. I had to significantly lower the brightness on the screen. However, after these things were accomplished my headache and I dove into the mysterious and potentially murderous passions of Maxim DeWinter.

When I awoke this afternoon it was to more strong pounding and a desire to sink into bed and never get up. At moments like this I borrow from the Hunger Games. After Rue has been killed Katniss goes into a quasi catatonic state in the arena. When she comes back to herself she does so with simple instructions.

“It’s time to get up Katniss”, “It’s time to drink water Katniss”.

When I feel that desire to sink into pain and lose the day I follow her example. “It’s time to get up Katniss.” It’s time to shower Katniss”.

This is how Operation Fake It Till You Make It began. (FITYMI) I have canceled virtually everything this week because of pain. I have accomplished very little. I actually went 7 days without a shower before somewhat abashedly discovering that fact. (Thank the goddess for lavender oil) So it’s time to use the routines of a healthy Misty to get out of this hole.

I showered. I put on makeup and did my hair. I put a goddamned bow in my hair. I dressed in something other than pajamas. I put on lipstick. I ate. I made my bed and grabbed my computer and checked email.

Do I feel better? No. No I don’t.

Do I feel like curling up in a ball at the bottom of a well until the world slowly seals me over for a lifetime of eternal darkness? No, not anymore, not today. Even if all I do today is stay in bed and watch my quietly dimmed television set my mood is more determined. I am once again ready to continue this never-ending grind of a fight.

So my fellow spoonies: It’s time to get up.

So I had intended to write about my progress from healthy, fully functioning member of society to managing life as a spoonie. Unfortunately learning to manage life as a spoonie has been an increasingly time consuming prospect.

I have had periods of increasing levels of energy. Of course, they last long enough that I get greedy and push myself to accomplish more, see more people, etc. As a result they are inevitably followed by a sudden and unavoidable crash into the wall and days, if not weeks, of virtually no accomplishment at all. I have got to get better at reigning myself in when I feel better so I don’t crash as hard when I don’t.

Interestingly I am beginning to believe that the first casualties of climate change may be us weather sensitive spoonies. As the weather patterns in Denver shift from our traditional indian summers into a moody series of summer storms reminiscent from my childhood I have been laid low by pressure changes more often than not. While my body relishes in the lower temperatures my head throbs and squeezes and beats it’s unrelenting tempo with increasing levels of pain. Are we in for an increase in symptom frequency and unreliability as our world’s weather patterns shift to accommodate our greenhouse gasses?

Regardless of the cause of the increase the symptoms are getting harder to manage. I am determined to revive my blog, despite the sense that I am whining. So I will try to say something, anything, here a couple times a week.