More Than "Just Tired"

So, let's talk about fatigue. I don't know about you, but when I try to explain fatigue to the Normy's they just don't understand. I can say how tired I am and people will look at me, in the afternoon wearing pjs, un showered, house cluttered, dirty dishes filling the sink and wonder how the hell I'M tired.. I mean really I haven't done anything.. But I HAVE done things. Just things you can't really see...

When it takes all I have to just wake up in the morning and pull myself out of bed. Make then kids breakfast. And sit on the couch. That's a lot for someone with a chronic illness. It's exhausting just thinking about moving. So when I actually move, I feel like a climbed a mountain.

Its not just an I'm tired and need a nap and will feel better. Its so much more. Its debilitating. Its all consuming. Its I'm so tired I can't even think about how tired I am right now. Its a mental and emotional AND physical tired. Its ever fiber of my being. And I hate it!

I'm tired of being tired. But I'm honestly so tired that I can't even be angry about it. Anger takes too much energy.

But how do you explain to someone that works all day at a "real job" that you equally deserving of being tired. And honestly feeling as though they don't even know what real tired is? I feel like there is no way to express the way fatigue really feels and takes away from your quality of life.

I used to have very long hair. And I just couldn't keep doing it anymore. I would have to take breaks in the shower and rest my arms while washing it. So I had to cut it short. I just couldn't handle it anymore. I miss my long hair sometimes, but I just can't manage it. Fatigue is such a bitch.

Not to mention the fact that with having EDS, when I'm sitting and doing nothing, I'm actually doing a lot. I'm using very muscle I have to keep my joints in place. My muscles get so fatigued because they are constantly in use. So when I'm sitting, appearing to do nothing, I'm still working. So then when I need to yet up and use my arms and legs, my muscles are already so tired from trying to keep my joints in place that they don't work well when I need them to actually complete a task.

My fingers dislocate when I wash the dishes. My shoulders dislocate when I relax. My hips dislocate when I sit. My knees sublux when they bend. Every muscle is exhausted.

So when I say I'm tired, a nap will not help me. And I have every right to feel tired even when it appears I've done nothing. I'm trying to keep myself together.

I just want you all to know, I understand that fatigue. I understand you're not just tired. And all of us with chronic illnesses understand. You're not alone.

I often feel guilt and shame because of my fatigue. I feel sooooooo lazy!! But I'm not lazy! I never stop. Never stop fighting for my life. Never stop fighting for some sense of normalcy. I am always fighting. And I deserve to and am equally right to feel tired!

We are fighters. We never stop. We are not lazy. We just have to decide everyday what we have to fight for. When you have a limited amount of energy, you have decide what is worth that energy.

Kids can't wait. A shower can. The dishes can. Breathing can't. Etc.

Some people have explained this with a spoon theory. You wake up and have some many spoons. Each activity costs you spoons. There is no way to get more. So you must decide what is worth a spoon.

How many spoons do you have today?