This is a work in progress. This drawing Is taking an embarrassing amount of time to complete. In between other work and being endlessly sick, I've been working on this for a blog post I wrote about a friend that hopefully I will be sharing soon. 

Drawing is getting pretty painful. I'm now experiencing dreadful pain in my neck and shoulders every time I draw for an extended period of time. This pain is not like the mysterious chronic head-to-toe pain that has been plaguing me the past few years. This kind of pain is sparked by muscle weakness from my progressive muscle disorder. My neck has been weakening for awhile but pain from the strain of holding my neck while I draw is new.

You don't realize how much you need your neck until you're forced to realize how much your neck does for you and what happens when it starts dying. I will push myself to draw until I absolutely cannot, but why must everything in life be so difficult? Why am I constantly saying goodbye?

On top of this new milestone my chronic symptoms have been kicking my butt which is just another thing that contributes to the slowness of my art. I was really hoping this year my focus could be someplace else for a change. But we are half way through 2019 and I'm still dealing with this. I've shared about all the rising chronic symptoms and chronic illness I've been experiencing and this year I've added chronic lack of appetite and taste buds, nausea and the worst stomach pain that leaves me up at night in dreadful cold sweats and dry vomiting. I'm in a constant cycle of chronic pain, itching, no sleep and now inability to eat much.

Chronic illness basically feels like you have the flu every day, except worse. For some, it’s the flu times two, times five, times ten, and for the most severe cases, times one hundred. I feel like I've had the flu for three years.

No one knows why, no one is listening.

I've shared about my chronic symptoms but not the extent of how it affects me daily. While I post art and travel pictures (these days mostly old ones) I don't share the really bad cycles that keep me in bed for days and even weeks/months on end.  It's shameful to share. Many people stuck in chronic illness experience shame because so much of our worth is wrapped in productivity. So I constantly feel guilty even though none of this is my doing. Intellectually I know there is nothing to be ashamed about but it’s a natural response, especially if you’re a doer. All I dream about is what my potential could be if I didn’t have all this.

My fatigue and pain gets so unreal I can hardly function, and even if I do sleep all day, it feels as if I’ve never closed my eyes. It’s not just being tired, like I haven’t slept a few nights, it’s absolutely crippling fatigue unlike and deeper than fatigue that derived from a muscle disease.

I'm constantly struggling to know this person who is at complete odds with who I really am. Past couple years I've been anti-social and less interested in the things that normally tickle my interest. Those who are chronically ill are often canceling appointments, appearing flakey and unreliable, which I hate. If you've actually seen me out socially I probably looked fine. Maybe I even did my hair and makeup to disguise how I really feel. Those in chronic illness often look fine which is misleading because chronic symptoms are often invisible. I’m sure many probably don't believe me because of this fact.

I'm not the best at acknowledging my successes or attributes and often immediately critical of how I could be better. I can be playfully self-deprictaing but with all humor there is truth behind the jokes. But one thing I do credit myself is I am tough. I have been through alot. Besides absorbing this muscle disorder at twenty and the first four years of my life riddled with health complications, including a cleft palate and deadly liver disease, I've been pretty healthy most of my life. I've never been the type to complain about aches and pains or being sick. I've always been tough with a high pain and endurance threshold so if I'm complaining about my health, there is something wrong.

I've been sharing because even someone who is disabled, due to a muscle disorder, didn't understand what chronic illness was. In the past when I heard someone say they had chronic pain or chronic fatigue it was so foreign that I regrettably didn't take it seriously because I couldn't understand it. Many people regard those experiencing chronic symptoms as weak, imaginative or overacting, including the medical world. This only exasperates this caged-in feelling.

Sometimes it's hard to share because I don’t want the attention, especially this kind. I was never the person who liked attention. In fact when I was young I did my best not to be noticed. But I share in hopes that more people will believe and listen when someone speaks about chronic illness. I share so those in search for answers don't feel alone because this entire experience can feel utterly isolating. I now understand why those living with constant and debilitating chronic illness resort to depression and even suicide. In the chronic arena it constantly feels like you have a loaded gun to your head but no one is paying attention nor cares.

It's difficult when you can't be yourself. I really can’t express what it feels like to constantly live under the gun of my body. It rules and dominates my whole life; every decision, every move. This hasn't been easy, especially on top of such an already severe muscle disease.  If I could just experience the muscle weakness without the chronic flu I would be so much freer and productive.  It's frustrating because I have so much to say, so much to contribute to the world and yet my time is wasted on my declining health and never-ending logistics of the medical world and insurance. I'm hoping there will be relief and answers in the near very future. Until then I'll do my best to keep hanging in there.

I'm trying to draw in smaller spaced-out increments to combat the difficulty of drawing. This makes my process even slower. For now when I think about what I’ve lost, and losing, I try to focus on gratitude for what is left and that I am still able to draw. Admittedly, this is no easy feat. Drawing is not something I want to say goodbye anytime soon. If I don't give up, you don't give up on things you think you can't do. Go after everything...before it's gone…completely.

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