Jessica Bee -Telling Tiles

Today’s ‘Meet my Peeps’ Guest Post comes from Melbourne. Jessica Bee is a dear online friend of mine, a social extrovert (rare flowers in the online world, those extroverts!) and a social worker.  After researching tirelessly, she embarked on the Levine Protocol and has seen remarkable gains with her Pandysautonomia, so much so that she has been able to return to part time work and is beginning to rebuild her life.  Jessica is generous with her heart, her time, her support and her wicked sense of humour. Here, she gets reflective and discusses her journey into illness, the impact on her relationships and the gains she has made. Oh, and the state of the tiles in the shower. I know! You can already relate!  Those tiles always tell the truth!

______________________________________________________________

Your body doesn’t give up the game at thirty. Thirty is buying houses and maybe having kids, and travelling and learning to bake. It is getting past the drinking until you fall over. It is realising your parents are just people like you and getting your cholesterol checked for the first time in your life. It’s breathing a sigh that you escaped your twenties without major organ damage, bankruptsy, untreatable STI’s or pleading insanity. Thirty is the calmness of finding the person you plan to set up house with forever, or realising you just want to set up house with two of every animal (and maybe a few extra cats thrown in for good measure).

For The Doc and I, thirty was meant to be about having babies and getting married and juggling careers and family.  We were meant to be having dinner parties, just to discuss that struggle for the rest of time. It was meant to be about life being easier, more predictable, and nourishing and fulfilling in every way. We were meant to have adventures, until the arthritis would set in.  After that, we were meant to creak along together until one of us forgot the other’s name, slowly fading away until there was nothing left of us in the world.

But then I got sick. I hit 30, and my body hit pause. The onset was sudden, as it is for many of us. One hour I was at the gym in my matching gym wear and shoes with complicated arch support; the next hour I was home, on my couch, and I could no longer stand. Then I was in an ambulance, in those same clothes, not knowing that I would not put them on again for almost 2 more years. They scratched their heads. Something was wrong, but they didn’t know what. They watched me and speculated and collected body fluids and blood. They dehydrated me and scanned me, prodded me and watched my heart through their wires. When that failed, they read the journal articles I brought them. I was in hospital so regularly; I was never sure where I was when I woke up.

I slept with the lights on for 6 months. I woke The Doc, panting and terrified, and he was left to decide if I had crossed over from ‘feet up the wall and wait’ to ‘ambulance’. When they told us what was wrong, it was The Doc who remembered the positive things- that it was likely (in reality, this was only a possibility) I’d feel much better within 5 years, that it would not kill me; that I would be ok. That he would be there by my side for the five years and then we would live our forever again. I remembered only the bad- I was sick. I was thirty and sick. I was thirty and couldn’t work. I was thirty and couldn’t give my partner the kids we had promised each other. I was thirty and I couldn’t even clean my shower.

If a doctor's time is gold, then(1)

He meets more of my needs than a man should ever have to, and this isn’t counting the ones he knows I have that I’m not yet aware of. He also, deep in his bones, believes that the only space in a shower that needs to be clean is a 30cm square where you stand under the water. True story. For a whole year the area outside of that 30cm square taunted me with my inability to give him this one simple pleasure that he wouldn’t even know existed- a secret between me and the world, something I did because somewhere in him I was sure he enjoyed the glisten of the tiles exactly like I did. And somewhere else in me I was furious at him for not just knowing that those 3-tone-mouldy tiles captured the complete failure of my body. Why couldn’t he just clean them, so I could stop being taunted as I gasped and groaned through every barely conscious shower?

Being sick like this, it is easy to feel like a terrible human being for being cranky because your amazing partner doesn’t clean the shower the way you want him to. It was only when I allowed myself the luxury of a normal relationship (including being cranky sometimes) despite being sick that I began to rediscover my worth. I couldn’t vaccuum- but I could give him undivided attention when he told me about his work. I couldn’t make him dinner- but I could scratch his back when he was falling asleep at night. And I sure could get mad at him for not cleaning the shower.

Most of my friends are gone. It’s a simple reality of being sick- you’re different, they are not, and simply put, they have no comprehension of what you’re going through. They might not care much, or they might not understand that in the bleak tarry mess of early days with dysautonomia their mere presence could have lead you out of some of the blackest waters you have ever known. Maybe they are scared of saying too much or not saying enough… or saying the wrong thing.

The luckiest thing that has happened to me (aside from somehow charming The Doc into my life) was finding other people who live like me. Words are stabbed into the keyboard like the slurring that ensues after two bottles of cheap red wine. Yet without the haziness, morning regrets and pap smears. Unless you have ever had a need to, you can’t begin to imagine the comfort gleaned from knowing that somewhere in your 3am, a friend is in her 3am too. Suddenly your world is no longer tumbling away, or even if it is, you’re tumbling together and by 4am you’ll have hit either rock bottom, or sleep. I don’t know how I would have made it through without The Doc- or my Dysautonomia group. Finding your herd and knowing you’re not the only one with stripes*.

The Doc still hasn’t cleaned the shower. I was one of the lucky ones who, for reasons unknown to the medical world, have gained function back after the first few years. I haven’t recovered, but I’m cleaning the shower, and somewhere, deep inside The Doc, he knows the joy of glistening tiles again.

_________________________________________________________________

*The ‘stripes’ reference relates to a common saying in Medical circles.  When Med students are training, their seniors will often say with regards to diagnosing patients: “if it looks like a horse and it sounds like a horse, it’s most likely to be a horse… not a zebra”.  And so the zebra has come to represent patients with diagnoses that weren’t ‘the horse’. Patients with rarely diagnosed diseases sometimes refer to themselves as ‘zebras’ or refer to their ‘stripes’.

Rehab

I have been having a battle this year.  Increased time in my bed coupled with a strange kind of pelvic/hip/leg pain have meant my mobility is significantly reduced.  Intestinal Dysmotility complicates things further.  You can read about the battle here.  Like most things, I have been tackling it at snail’s pace.  There’s the problem of having a cast-iron appetite (seriously.  I don’t know why that is.  I spend most of every day nauseated but my love for food even surpasses that!) And then there is the issue of dizzyness when I am upright.  I spend my upright time on the essentials related to my kids and family.  It’s exhausting.  Riding my bike, which was possible even last summer, is out of reach for me now.

I saw my local doctor last week.  She was concerned about the way things are. More time in bed means less time weight bearing.  That means lower bone density and muscle wastage, further reducing mobility.  Less time moving means even my significantly reduced food intake, is still providing me with too many calories for my metabolism to burn off.  It’s a travesty that these tapping fingers can’t be my exercise, they work hard enough for all of me!  Except, apparently, that’s not an effective method.  So I need exercise that I can DO, for my whole body.  Recumbent preferably. Designed for me and for my specific needs.  My doctor suggested our local Rehabilitation Trust.

So yesterday I had a brilliant chat with Lynette.  She’s a clinical physiotherapist there.  Next week she is going to meet me in their gymnasium to do an assessment. We are going to come up with a plan.  I am already impressed with her.  I told her I had problems with my autonomic nervous system and she said “hydrotherapy might not be an option for you then.  Is temperature an issue?”  Oh my!  I love a professional who knows about the autonomic nervous system!

I’m cautiously optimistic!  Watch this space.  🙂

I thought it would be cute to put Amy Winehouse’s ‘Tryin’ to make me go to Rehab” song on this post. So I searched You Tube.  And this band Rehab popped up.  I clicked on a few of their songs and I was struck by the amazing variations of their lead singer’s voice, he can go from gravelly jazz tones right into sweet angel.  What a beautiful voice. The lyrics are all about drug and alcohol addiction.  Mercifully, drugs and alcohol aren’t my problem.  But listening to this song reminded me of times in my life when I have been dealing with addiction in people I love.  It’s a brilliant song.  So even though it’s got nothing to do with the type of rehab I’ve been talking about, I’m posting it.  I am a big believer that I should pay attention to what ‘pops up’ in my life.  So maybe, this song is for you or someone you love.
A little bit of random musical kismet.

Rehab:  I Can’t Catch Up To You.