I wrote this post a couple weeks ago, but just did an illustration for it today. It is cute and light-hearted, but honestly, I feel anything but.  It's been rough the last couple weeks.  Feeling highly unmotivated and..well...sad in general. One day I should break out all the illustrations I want to do that have a more serious tone, but this 'princess and the pea' was next on the list. 

November 23, 2010.

The last week and a half I've had increased difficulty  getting up from my toilet at home.  At the beginning of this year I had to get one of those raised (elevated) toilet seats, so I can get up by myself when I am home alone.

Nowadays, if I am anywhere but home, I need help to get up from any seated position, especially the toilet. Toilets are too low for me. In my 3.5 years in California I have lived in 3 apartments and in each one of them I always have to figure out new and inventive ways to get up by myself, and my current home is no exception.

This combined with increased weakness forced me to get a 'booster' seat this year. Getting the raised toilet seat was like pure freedom.  At the beginning of this year it was already getting hard for me to get up and down and since I am working from home it was important for me to be able to do this on my own.

But, the last couple weeks it has been harder to get up even with my booster seat.  Sometimes I need to keep trying and this trying can last for 10-20 min.  Today was the worst, though. I sat there and tried to get up for nearly 40 min. My bathroom is fairly small and with any new bathroom, or new environment, I need to have creative planning at hand.  

How I usually get up is:  The toilet is right next to the door. I grab onto the door knob with my left hand and position my left foot in front of the door. This way I have leverage and can balance the opposing strengths. I pull myself up with my left hand, push against the door with my left foot and simultaneously I push up with my right hand that is resting on the 'booster' seat. Due to the length of my arm I can only push so high, so I rely on positioning my hips, so that my leg can rest in the hip socket and I can push the rest with my leg.

But, today this wasn't even working.  I keep trying, but just plopped back down.  Eventually I had to stop and rest so that my legs wouldn't tire or damage to the point where it's impossible for me to use them.  After each failed attempt I grunted, groaned, pleaded and got increasingly angry--hoping that the anger would drag up any hidden energy left in my leg.  

"This is ridiculous", I kept thinking.  

The house sounds so still. I can hear the furnace wheezing, the birds outside, Pippi's pacing paws on the wood floor, my home's every breath. It's so quiet and I feel alone.  

As I keep trying I am dangling in the air hoping, awaiting to see if I have the right balance or lift, but end up falling on the toilet once again.

"If only my booster seat was taller" I thought.  

Dropping down is easy, it's the getting up and lifting that is hard. During this ordeal, for some reason I thought of the fairytale The Princess and the Pea.

It's about a young woman whose royal identity is established by a test of her physical sensitivity to a stack of mattresses that cover a single pea. This single pea at the bottom of the bed keeps the young woman awake the entire night. Since, only a true princess would have the sensitivity to feel a pea through a stack of 40 mattresses she is crowned princess.

As I am trying to creatively figure a way to get up off this overly warmed toilet seat, I imagine stacking up these toilet seats, so that I have enough height to stand without a problem.  I don't expect a prince at the end of this feat, I just want to be able to stand up. 

I still remember, about 8years ago, when a doctor asked me if I had a hard time getting up and down. Back then I had NO problems getting up from a seated position and often found his questions puzzling, but now it has become virtually impossible and the symptoms of HIBM are stacking up one by one--revealing its true form.  Any seat I sit in has to be a perfect height and my environment fixed a special way for me to be able to get up by myself.

We went searching for an alternative toilet solution. Unfortunately, there is nothing out there. I mean, there are things, but they don't tailor to every type of condition and their specific needs.

My current booster seat is 5" tall.  I think a 7" would work. We tried toilet side-rails but my arms are too weak for me to push myself up with that configuration.

We tried one of those adjustable toilet seats that uses nuts/bolts, but that was too unstable.

I'm not disabled enough to need to hire assistance and if I did it would only cause me to rely on others more and my progression would come more rapidly. So, the current solution, which is working, is a barstool.  

No, I don't shake up martinis and cosmos on my toilet, though not a bad idea for the future. I use the stool as a platform and leverage, in the same way I get up and down from my desk. I place it in front of me, lean on it and then push myself up with both legs and arms.

Going to the bathroom is something we don't think about. It's easy. We do our thing and don't give it another thought.  But, for me, and others like me, going to the bathroom is an increasing ordeal.  

With that, I crown myself The Princess and the Pee.  

I can make humor out of anything, but at the time it is happening, it is anything but funny.  I get intensely frustrated and feel way too alone, and these moments only remind me of the long road yet to come.  These moments will only increase in number as time progresses.  Sometimes I'm not sure if I have the "strength" to endure all that is ahead of me...but, I'll keep trying.