Posted on | Saturday, October 16, 2010 | 2 Comments

This blog post isn't going to be about something I've cooked or the random exploits and adventures I have with friends. I have been sick for the past four days and right now I can't tell if I'm on the tail end of it, or if it's just gaining momentum. When I get sick it's difficult. It's painful. It makes life a challenge. Some days are harder or than others. Today has been one of the harder days.

My body doesn't always do what I tell it to. Walking takes effort and focus most days, telling my body to put one foot in front of another. Sometimes I will tell my legs to walk and I fall. My knees, hips, and ankles will give out and down I go. It hurts. I have to hold onto furniture to ensure I don't collapse. My hands don't work all the time either. Opening doors, holding a fork, hugging my son... they all hurt too much.

Some days, like today, my hands still work. Though I don't know why or how. Usually my hands are the first thing to go. I'm thankful for it, because even though the rest of my body isn't working I can still do some things. Not many, but some. I can walk, even if it's painful. I try to focus on what I can do, because the list of what my body can't do is depressing.

Before I had Kael it wasn't so bad. The only person I would let down when my body didn't work was myself. Now my heart breaks when I have to tell Kael that I can't carry him. He doesn't understand that Mommy's body doesn't work right. He will crawl into my lap and cry. The weight pressing against me hurts, his head on my shoulder makes me want to cry, but I try to hold him anyway. I'll bury my face in his shoulder so he can't see my face and realize he is causing me pain.

I was diagnosed at 14 with my autoimmune disease. I felt so angry when I found out what was wrong with me. That my body wasn't going to get better, that there wasn't a cure for the pain I felt. Someone that age shouldn't be in and out of hospitals not knowing what is wrong with them, or talking about pain management and medications. It took me years to learn how to do things differently, how to walk up hills without falling, using different muscles to make the journey. I learned to hide my pain. I worked hard to train my face not to show it. I built resolve that I would still do the things I did before and that the disease I was stuck with could shove it.

It's been hard keeping that mentality. My hair has fallen out from my immune system failing, handfuls just fall out and then slowly it grows back. I forget things. Mostly it's short term memory. I have to leave notes because I will forget otherwise. Sometimes I pretend I remember discussions because I know people have said the same thing not a day before and I don't want them thinking I don't care. I've had to train myself how to remember.

I get heat stroke easily because of the various things wrong with me. Spending 15 minutes in the sun can make me pass out if I am not careful. I lose my balance easily and I fall or trip often. My kidneys are damaged and I have to always be aware of what I am doing and that I stay hydrated. When I know that I must take stairs and I am having a hard day I tell people I will catch up because I need to take them one at a time. Sometimes I can't sleep, other times I am exhausted for days on end and no amount of sleep fixes it. There is so much I have to be wary of. When I go out I have to plan ahead: will I be able to rest as I need it, will I be able to watch and tend to Kael, will I be out in the sun for too long, will I, will I, will I.

I don't mention this to people usually, that so much thought goes into the most basic plans. I have to do my chores around my body's schedule. Everything revolves around when and how my body can do it. I don't tell people that when I am terse with them it is usually the pain talking. I'm in pain so often it seems ridiculous to tell people when I hurt. I always hurt. There is always pain somewhere, it's just the severity that changes.

It makes life harder in a way to not show that so much is wrong with me. You can't see the diseases I have, I don't look sick even though I am. I don't broadcast it to everyone, and so when I am bedridden for days on end the response is that I am faking it. Explaining to co-workers or my boss than there is something wrong with me feels insurmountable. Telling someone that even though I look okay I'm not is hard. It is hard to admit that I am not okay.

I've gotten used to people seeing me differently after knowing how much is wrong with me. I secretly hate it. I don't like that some people allow my disease to define me. I'm not my autoimmune disease, my kidney damage, my crooked back, my PTSD. I am me. These are only one part of me, not what defines me.

This morning as I was in bed trying to force my muscles to work Kael crawled under the covers with me and cuddled. It hurt, but I held him. I told him I was hurting, that I didn't feel good. And he looked at me for a long moment then grabbed my hand and kissed it. Then he smiled and said "It be okay, Momma."


2 Responses to “Pain”

  1. Anonymous
    October 16, 2010 at 6:44 PM

    Thanks for sharing this. I know it is hard to talk about because it just never goes away, so it's just this dark cloud that is *always there*. I hate it too and my illness is not as severe as yours. I hate that sharing my pain sounds like whining, that my illness may sound like "cranky old lady syndrome" to someone else's ears. I hate feeling spaced out all of the time and people treating me with condescension because I seem like a big dumb flake. Feeling pain when my loved ones try to be close to me is so feels pretty unfair. I'm so sorry you are going through a tough spell right now. You will be in my prayers.

  2. Alisha
    October 16, 2010 at 6:54 PM

    Thank you, Jodie. I'll be praying for you as well.

    It is very hard, you're right. When you don't look sick people don't understand that there can still be something very wrong. I feel so similar, that when I share what this disease does that it's complaining so I try not to talk about it, but there is no hiding from it. Pain is part of my life and I've spent the past 10 years learning to accept that.


Photobucket I was born and raised in California. I have also lived in Hungary, Texas, Alabama, Oklahoma, and I will be moving again this summer. Kael is my incredibly awesome kiddo who is growing up far too quickly, and Alex is my fiance who makes me happier than should be legally allowed. I write about them a lot. I'm mildly obsessed with cooking and photography. I write about those things, too.