What the Summer Taught Me

I have recently been coming to grips with the fact that I will not be able to function at the speed and productivity level that I am accustomed to. This isn't new or sudden, however I'm starting to accept it rather than fight it. Fighting it leads to exhaustion and more bad days, as well as constant frustration about not meeting goals and deadlines. This summer has been a lesson in acceptance and it's been a hard one. I'm still not all the way there and I hate every single minute of it. One of the things I have always prided myself on is my high productivity level and my ability to turn out very good work in very short time. I can still do that, just not at the rate I used to.

I have had to accept that I will probably never be able to return to a 60 hour work week. I will not be able to function for several days on a few hours of sleep and expect to get out mostly unscathed. That kind of behavior lands me in bed for 2 days. I won't be able to do a lot of the things the way I have done them and the way that I would prefer to do them.

This has not been an easy process and I'm still not sold. It hurts my feeling when people tell me I won't make a self-imposed deadline or laugh off my plans because they don't think my health will hold. Even though their attitudes are thoughtless, they are not necessarily wrong and it's very frustrating. I spent years covering my illnesses and finding ways to hide my bad days. I can't do that as easily anymore and it has changed my interactions with some people in a way that is humbling...and I hate it. It's hard not to resent the good days because they are so often followed by a much worse day. It breaks my heart as I change my plans for the future to accommodate an unreliable body and even worse to see the "I knew it" look from people who doubted my ability to make those plans happen in the first place.

Someday, I hope that I will not longer resent my body for failing me. I pray that I will no longer hate every time I have to say "I can't do that today" because I can't move my legs. Someday, I hope to accept the new order of my world and find the joy in it despite the loss of so much.

But that day is not here yet.

Different Kinds of Pain

Different medical conditions have different types of pain associated with them. When you have more than one pain condition (as I do) then you get more than one kind of pain. This sucks for people who are dealing with me in pain because they have to work out which kind I'm in before they can help in any way.

My joints hurt because of the weather (arthritis) pain - This is pretty self explanatory. Thankfully, aspirin or any anti-inflammatory helps with this.

My uterus hates me (endometriosis) pain - For the ladies, imagine your cramps on steroids. Like a knife to the girly bits. Not much helps with this except percocet and heat.

My entire body hurts and is slightly numb (fibromyalgia) pain - This is actually really hard to describe, but I think I worked it out. You know when you leg goes numb and you rub it? That feeling, all over. It's miserable. Nothing much to do but stay in bed, stay warm and try to walk as little as possible since that is the definition of hell. My doc and I are working on the preventative level to try to keep things under control, but it's hit and miss.

All of these can happen at lesser levels and I usually experience at least one of them a day. Unfortunately, they can also happen in concert, which is highly annoying. The fibro one is especially annoying because my brain is fully active and aware, it's just my body that refuses to do what it's told.

The good news is that after a really bad day, the next day is usually better (can't be much worse) so today is a better day. And because I slept on and off all day yesterday, I am actually feeling rested. Huzzah!

Putting my sickness to work

Another day of pain and thus, meds. There are certain things I can't do on medication reliably, such as studying or calculus, so I'm hoping I can do those things tomorrow. But it was sunny today so I was determined to do something. Yesterday was completely lost to sleep and that half awake space I get into when the percocet kicks in.

So today, I got some laundry folded and got some more laundry done. My biggest accomplishments were making tomato sauce for the rest of the week (or a couple, depending on my meals) and making a loaf of Moroccan bread. I cut the recipe, which should make two loaves, just to do the one since it's my first time. It turned out really well and I had some of it when it was still hot with butter and honey. It was delicious. I will probably need to make another loaf this week at some point since it turned out well and it certainly beats store bought bread. It doesn't replace sandwich bread, but that's why I want to get a bread machine someday.

I have this dream of getting to a point where more of the food I eat is freshly made. Pasta is really easy to make. I make my own sauces anyway, but expanding on that selection is good. Bread too, now that I know how. I already avoid store bought cookies (except Oreos, which are crack, and even though I've made Oreos before, it's not the same), so it's just a matter of expanding that. Knowing what is in your food is great. The Moroccan bread is flour, water, oil, yeast, salt and sugar. That's it. And I can name all of those ingredients.

Also, I finished the second of what I think will be a set of three washcloths for my sister. I've cast on and started the third, so I might get that finished this week. I don't have any major projects until I learn to do socks over Spring Break, so I may just knit up a bunch of washcloths in the meantime.

Coping vs. Adapting

I am a Spoonie (See Spoon Theory and Butyoudontlooksick.com in my favorite links). The best part about being a Spoonie are the forums of others like me, who may have different issues or the same ones, who understand what I'm going through. When I finally got the Fibro diagnosis (no small feat), the Spoonies rejoiced about it because they understood what it's like to not know what's wrong and then finally have a word to describe it. It's amazing how helpful it is to be able to attach a word to symptoms. It's glorious. Second best thing to a cure.

Recently I read a great comment about coping vs. adapting. It was a response to a Spoonie who had been told by all the people close to her in her life (except her doctor) that it was "all in her head" and that she was "milking it". Harsh words, especially for someone who is sick. I didn't copy the comment because I didn't want to snag without permission, but my take is below.

The definition of coping (per dictionary.com) is to face or deal with responsibilities, problems or difficulties, esp. successfully or in a calm or adequate manner.

The definition of adapting is to adapt oneself to different conditions, enviroment, etc.

Coping is an important skill in life. It's how you deal with things that you might not yet be ready for. No one sees the struggle and the fight. Great if you're suddenly in a leadership position and people are looking to you for command or for reassurance.

Adapting is also very important because genetics and evolution has taught us that those species which adapt also survive.

However, if you're sick, they are a completely different set of skills.

Every person who is sick starts out learning to cope. To get through the day and then the next. To put one foot in front of another. To get through, get by. And that part about a calm or adequate manner is so important at first. It matters so much for people to not know - for the people who are your friends to think you're fine. It's vital. It means that you're not changed, really. You're the same person, just with this small thing that can be brushed away. It's just a word.

But eventually, at some point, you come to terms with being ill. You accept that it's part of you. It doesn't define you, but it's part of you and you must take it into account (Spoon Theory). It will be not brushed under the rug or ignored. And so you learn to live with it. You learn tricks and tips that become your new way of life. And while the world doesn't need to see your impairment, you start to allow those who are your friends in. You let them see that your good days aren't always as good as you say and that you have bad days. You have adapted.

However, this can lead to some just confusion among those who are brought up to speed in the adapting phase. They knew you had this illness, and that hasn't changed, so why are you suddenly acting ill? Why are you canceling plans and using your illness as an "excuse" when you never did before? It's easy to see why they wouldn't understand. Some of them won't and it is a test of relationships when the one who is sick finally adapts. But the distinction is important. It matters.

We do not question when someone who has been diabetic starts living the way they should to be healthy, asking them "are you sure you were diabetic before when you ate those donuts?" Why? Because we applaud that they're taking care of themselves. And yet it is so easy to look at someone who has started slowing down, resting more, respecting their own physical limits and say "You were sick before, nothing's changed, you're milking it." Because you can't see it and a lot of the time, you've never heard of it. Worse when the doctors aren't even sure what the diseases are - they have a name, but no origin, vague diagnostic criteria, very little treatment and no cure.

I was discharged from the Army because one of my NCOs couldn't understand a disease he couldn't see and couldn't be cured, but wasn't fatal. Our Spoonie above who had problems with those close to her....well, thankfully, her SO came around after some long talks. I could go on from friends and Spoonies who have lost jobs, friendships, relationships because someone couldn't be bothered to understand. I'm at the point where I'm tired of fighting it. If someone understands, or is willing to take the time to understand, golden. If not, they can move on. I don't have the spoons.