10,000 Spoons Short


I haven’t forgotten that I intended this blog to post recipes. I still plan too. But I have limited energy, and other blogs, most of which have little more posted on them than this one. It’s also easier to write posts like this because I know how to write. But, as I’ve mentioned before, I don’t know how to cook. My mother sent me a link to today’s daily post writing prompt from wordpress:

http://dailypost.wordpress.com/dp_prompt/10000-spoons/

Basically, the idea is to add on to, or write about, Alanis Morrisette’s song, “Ironic”, from the album Jagged Little Pill. I love that song. It’s not my favorite from the album and it does bother my writers mind that most of the examples given in the song are not remotely ironic — they’re just unfortunate. But I’m a child of the 90’s through and though, and that’s one of the few albums I’ve ever heard in which I think every single song on it is excellent.

On a blog that at least claims to be a cooking blog, it would make sense for spoons to refer to teaspoons, tablespoons, or measuring spoons. Not so much. Did I mention I don’t know how to cook? In the past few years, spoons have taken on an entirely different meaning for me. I highly recommend reading about spoon theory, written by Christine Miserandino here:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

 

It’s a little more complicated than how I’m going to summarize it, but “spoons”‘ are essentially a measurement system for units of energy. Most people don’t need to worry about spoons because they’re healthy and their energy depletes at a normal rate — or, if you’re like me before I got sick, at a slower than normal rate. So, for normal people, yes, cooking, cleaning, and working wear out their energy. But it doesn’t usually completely wipe them out. And doing normal, every day things like changing their clothes or taking a bath or shaving don’t significantly drain their energy. But If you have a chronic illness, they do. If you’re very, very lucky, you can work. If you’re not, you can’t. If you’re reasonably lucky, you don’t have to constantly reschedule doctor’s appointments (which would prevent you from working anyway because there are so damn many of them) because you are either too exhausted or in too much pain, or both to be able to make it to your appointments. If you’re blessed, you have family and friends to share the workload in our house — and usually to take over most of your share, too.

 

There is a line in Alanis Morrissette’s song that says, “It’s like ten thousand spoons when all you need is a knife”. I remember the days when I didn’t have limited spoons. Right now, ten thousand spoons sounds like an infinite supply. I remember when sleeping or relaxing would truly replenish my energy and I would be raring to go again. Even then, there were hitches. I wonder if I have the genetic version of this disease because even when I was healthy, I would burn out easily. It took me longer to do things than it did for other people. Even if I don’t, I have a learning disorder and I struggled with depression and other mental health issues when I was younger. I overcame them, but chronic illness, chronic pain, and a forced complete change in how you live your life are prone to bringing depression back with a vengeance.

 

wish I had essentially unlimited spoons again. I wish I could easily replenish my energy again. I would love to even have ten thousand spoons, and forget about the unlimited supply. But I don’t. I started the day with maybe twenty. I used up some talking to my mother and texting my friend. I’m very glad I did both of those things and I enjoyed them. But they do eat spoons. I want to take a bath and I haven’t shaved in weeks. I feel grimy because I’ve been wearing the same outfit for the past three days and my shirt is now dirty. I still have to call my father. I don’t know how many spoons writing and publishing this will eat up, but I’m very, very glad I’m doing it. Today isn’t a great day, energy wise. But it’s a far, far, better day than most of the ones I have lately. BUT, it comes at a huge cost. I have more spoons today partially because I slept until three pm. I tried so hard to drag myself out of bed this morning and it just didn’t work. Now, not only is my sleep schedule messed up (which is supremely hard to fix with a chronic illness — in my experience, anyway), my med schedule is also messed up, AND I missed going and getting fasting blood work done that I need to do by Friday. I have doctor’s appointments on Tuesday, Wednesday, and Friday, which means it needs to be on Monday or Thursday. I’ve had about a month to try to get this blood work done.

 

I wish I had the spoons, but what I really need is a knife. I need a knife to cut through the constant fatigue that is so thick as to be almost tangible. I need a knife to slice away the brain fog that affects my memory, focus, concentration, and sometimes, it seems, even my IQ. I need a knife in my hand to have a weapon, to be armed for life and all I need to do. I need a knife as a utility tool to do all the chores and housework, maintenance and scheduling, all the communications and errands that I need to do and can’t. I need a knife to cut through all the b.s. and bureaucracy and red tape. I need a knife… I need to be a knife to have a sharp mind, to cut my way through trials, to avoid taking crap from people, to say “enough is enough”,  to organize,  to schedule, to plan, to get up in the morning, to stand throughout the day, to cook, to go to sleep at night. I really, really, need a knife. And if I can’t have the spoons, I’ll try to take the knife — or make one out of cardboard if I have to. But even though what I really need is a knife, I’d happily settle for ten thousand spoons.

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Is This An Emergency?


Probably not. I keep telling myself I should start a blog called, “Addison’s Cookbook” with an actual recipe, or something.

But some stuff has been bothering me, and, as previously stated I really don’t know how to cook. So, I’ll try to get a recipe up later today, but no promises.

Last night, I had salmon with my dinner. It was good. It had been made two days before yesterday. Rumor has it fish’ll hold for about four days if it’s wrapped and refrigated. So I figured I was fine. My one partner taste tested it before I ate it and said it was fine.

After I got full, my other partner ate the rest.

The only problem is, after I ate it, I started feeling nauseous. A while later, the other person who’d eaten the fish developed an upset stomach, too. Now, it probably had nothing to do with the fish.

I get nauseous sometimes on steroids anyway. And believe it, or not, I’m not a hypochondriac, nor am I prone to psychosomatic symptoms.

But I worry. Even though worry is stressful, and stress is bad for the adrenal glands, especially if they aren’t functioning properly.

It’s not so much that the fish made me feel sick, as that something made me feel sick. I was more worried about it being fish, because I know the body rejects food that isn’t good for it. Fortunately, I almost never vomit, even when I’m really, really sick. The only exception is when I’m dehydrated. But anything else, even the flu, and I’m usually fine.

Here’s the problem. If I vomit once, I have prescription anti-nausea medication to take to try to prevent me from vomiting again. I also have to take more hydrocortisone, and try desperately to keep it down. Because, if I vomit twice, for any reason, I have to go to the hospital. This is because my body will be expelling not only nutrients, but also fluids and steroids. If you have Addison’s and you don’t have steroids, especially if you’re sick and/or undergoing any kind of trauma, you can die. So normally, when I go to the hospital, I have to get an IV of hydrocortisone and fluids. That also means I have to stay in the hospital until the doctors can a) dig up an endocrinologist from somewhere to tell them what to do, and b) wean me off steroids until the dose is low enough that I can go home and step down the dosage orally. If I’m super lucky, and it’s a small thing (yeah, right. Nothing is small with Addison’s, so a smaller thing) I can just up my dosage get a nice medrol pack of prednesone from the people in ER, and go home and step down off of that.

Also, for the past three days, my left eye has been twitching randomly for most of the day. I have no idea why, but I suspect the steroids. When I searched “eye twitch” and “steroids”, a bunch of results came up. Mostly, they had to do with body builders, not the chronically ill. I’m sure body builders have good reasons for what they do, but why anyone would go on steroids when they don’t have to is beyond me. It’s extremely annoying, but I already have a doctor’s appointment set up for next week, so as long as it doesn’t get any worse, I’ll ask him then.

This is my life. Is this from steroids? Is it from stress? Is it something I ate? Am I getting sick? Should I up my dosage (coloquially, stress dosing)? Should I stay where I’m at? Do I need to tell my doctor, my naturopath, my family? Do we need to pack everything up in case of an emergency? Is my life in danger? Is it something completely unrelated? Is it nothing? Am I developing more autoimmune problems? Am I overreacting? Is this just something I need to deal with.

I have a collection now. Little plastic hospital bracelets with my name, admittance date, and allergies listed on them. One time, when I got home from the hospital, I was in tears. I had had strep throat for four months and I was having an allergic reaction to two seperate medications. So I was on eighteen medications a day. It turned out my previous endocrinologist had given me medication not commonly used for Addison’s and had me on doses far too low for what my body needed. I cut off my bracelet and wrote, “STILL HERE!” And the date. Since then, everytime I’ve gone to the hospital, (and that’s been a lot, especially before I switched to a much more competent doctor), I’ve kept my bracelets. I write, “Still here,” on each, though the writing wears off sometimes, and I also write the date, and if there’s room, what I was admitted for.

I’ve been okay before. Long, long, before Addison’s and Fibromyalgia I walked through fire and lived to tell the tale. But every time something goes really wrong, I wonder, “Is this it?” “Am I going to be okay again, or is this the end of the line?”

But it didn’t escalate last night. I felt fine after a while. My twitching eye is very annoying, but it doesn’t seem life-threatening, not even to someone who could potentially die of the flu or a simple stomach virus.

Whenever it is, it isn’t right now. It probably isn’t today. Today, regardless of how I feel, I am STILL HERE.