Tag Archives: chronic illness

“Stay with me, my blood”

Have you ever felt like holding yourself together is all you’re capable of? I’ve been holding myself tightly, arms crossed over my always-sick stomach. What if I let go and I just…crumble? Fall to my knees, sob, and just howl my anguish. I’m afraid that if I let go of this fucking pain, it will destroy me. I won’t get back up. So I don’t let go. I try not to think. I push my thoughts aside however I can. Of course I’ve cried, probably a million times. But something about this pain, these tears, feels different. This pain tastes like eating hot coals, one after the other, until I burn up from the inside out.

You know that game we surely all played as kids, where we pretended the floor was lava? That’s what my mind is like these days. I’m balanced on the tiniest of throw-pillow islands with boiling, steaming red grief surrounding me. I’m burned no matter which way I turn, and so I stay on this pillow, stuck, raw and blistered.

I keep picturing myself like this:

I sit in a lawn chair in the middle of my house while strangers wander around talking quietly and judging my things. Someone asks, “How much for this chair that caught your daughter when she fell asleep standing up after claiming she wasn’t tired?” And I say, “That chair is not for sale STOP TOUCHING MY MEMORIES I’ll take $50 for the pair.” And so it goes until my home this house is empty except for me and the past.

The guilt is eating me alive. At the same time, I’m screaming in my head that this isn’t my fault. The irony: My mental and physical illnesses are destroying my life and there’s nothing I can do about it because I’m mentally and physically ill.


The Spoon Theory

my spoons

Warning: This is not a funny post. It is about chronic illness. I’d really like you to read it. I promise I’ll attempt to be funny next time. I’ve been dealing with a lot of health issues this past week and I’ve felt very helpless and misunderstood. I want you all to know that I am not asking you to feel sorry for me. I don’t want anyone to pity me. I just wish everyone could understand what life is like with chronic illness and the Spoon Theory, I think, is one of the better ways to describe it.

The Spoon Theory basically says that with chronic illness, you start the day with a certain number of spoons, when a healthy person would start each day with an unlimited amount.

Pretend you wake up and you have 12 spoons.

It costs you a spoon just to get out of bed because your entire body is one giant ache and you never feel like you got any sleep. Next you have to walk down the hallway and wake up the boys and get the daughter’s clothes for school. This costs a spoon because this early in the morning you have the most intense pain and sometimes can barely walk. You have to use one hand to uncurl the other hand because they don’t want to work yet. You can hardly lift the coffee pot to pour coffee. You think about asking your husband for help and then feel guilty because he is going to work and you are not. It costs you a spoon to get yourself mentally under control and continue getting the kids ready to go to school. If you made lunches the night before that’s good, but if you were too tired then you have to do it now and that will cost you a spoon because of all the bending and walking and you are still in a lot of pain.

The kids and husband leave for the day and you are left with 8 spoons. The house is a mess. Do you have to go anywhere today? If you do, you can’t do anything else because driving and running errands or just running around town will take all the rest of your spoons. All of them. You will be in so much pain and so exhausted by the time you get home that you will be unable to do anything else.

This day, let’s say you get to stay home. So you do the dishes and maybe start a load of laundry. Take away a spoon. You need to think about your depression and do something positive so you will color or write in your journal or meditate or do yoga. This costs at least one spoon, depending on what you decide to do.

Remember, you haven’t showered, gotten dressed, or even brushed your teeth yet. You get dressed and brush your teeth and you are tired, so tired. It costs a spoon.

You’ve got 5 spoons left and it isn’t even noon. The house is still a mess. If you really, really clean it, it will cost all of your spoons for today and probably some of tomorrow’s. You need to eat but you are so nauseous that you can’t, plus you hate to waste a spoon just to feed yourself. You decide to watch t.v. for a while and rest. You think about taking a nap, but you can’t because you are too anxious and feel like you can’t breathe. It costs a spoon to get your anxiety under control.

You have 4 spoons left. The house is still a mess. You still have to figure out something for dinner or maybe your husband will bring something home. You better have him bring something home, because you will have to use at least 3 spoons to check the kids’ backpacks, sign papers, help with homework, and generally be present as a mother when they get home. You won’t be able to make dinner, and since you’re still nauseous, won’t be able to eat it either. It is 7 pm and you’ve only got one spoon, but your daughter still needs a bath and you didn’t even shower today. You still have to pack lunches and make the coffee for in the morning and your husband hasn’t gotten any of your attention. You feel like a failure as a wife and a homemaker and a mother. You feel so sorry for your family because you don’t have enough spoons to do everything you want to do for them. The stress leads to a migraine. You are down for two days, crying and throwing up and maybe going to the emergency room. This takes all of the spoons for those two days, and possibly some from the third day because you are exhausted after such a bad migraine.

So that’s basically the spoon theory, and basically my life. I didn’t mention allergic reactions, and I think I actually spend more spoons on managing my health and depression, but you get the idea.

It takes all my spoons just to get through a day doing the bare minimum. If I want to take the kids somewhere fun, that’s all my spoons. If I want to go out to eat with a friend, I have to realize that I will not be able to do something else. If I have a doctor’s appointment in the afternoon, I better lay down all morning.

I have a really hard time dealing with my health. It makes me incredibly sad to not be able to do the things I want to do. I hate having to plan my day around what I feel physically and mentally capable of. I hate that I don’t have enough spoons. I hate that by looking at me, you can’t see how hard I fight every day. I hate thinking that people think I am hateful or lazy because I don’t do things and I cancel plans all the time. I hate that I have to budget my energy and my time.

The Spoon Theory was written by Christine Miserandino at www.butyoudontlooksick.com. You can check it out at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Does The Spoon Theory apply to you? If so, what things do you do to stay positive, knowing that you’ll be counting spoons for the rest of your life? Do you find that you judge yourself more harshly than anyone else does? I know I do. Don’t you love my nail polish?

**EDITED TO ADD: I love each and every one of you. I swear I feel stronger with every kind comment and it really means so much to me that you take the time to send me your thoughts. I might cry, guys. You are all my favorite.


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