Be Aware, Be very aware...

So this morning sees the dawn of EDS awareness month when the zebras come out of the dappled shade and show off their stripes.
For those few readers who do not understand, a zebra is slang for a person with Ehlers Danlos Syndrome.  And if you do not know what that is...well nor do most doctors.  have a look at the link.
Also I see from my Big Brother panel that I have readers in India and Russia.  Hello!  Please feel free to pop a comment in just to say Hi.  I am really not sure what interests you here but thanks. Please note the name-that-dragon competition is still open.
Now looking for readers in Antarctica to complete the set.
Today my EDS decided to make itself aware.  I have fallen over twice due to left hip shennanigans.
I should say right out that as far as EDS goes I am dipping my feet in the shallow end.  I get subluxes but so far no frank dislocations, my subluxes often reduce spontaneously or at least easily...most of the true horror such as felt by my friend Percy (waves) is spared me so far...That said the condition is generally degenerative and there is no cure.  Consequently all I am doing is sticking my elbows out to slow my slide down the Helter Skelter.
So what does the light end of EDS feel like?
Well it hurts for a start.  Lets kick off at midnight- I will normally be asleep, having taken some form of meds to assist.  My shoulder will sublux around 1 am.  So I will be forced to roll over gently to stop the screaming pain, then turn onto the other shoulder.  Give that 3 hrs  and the same thing happens.  So I get a nights sleep in episodes of pain.
The alarm goes off and I need to get Foal to school.  I roll upright and concentrate on my legs.  My shoulders will normally pop back in once I am upright but the hips and knees- I use muscle tension to stand then walk like Herr Flick of the Gestapo, not using hips or knees, and wake foal.  Then I do a set of tensioning moves whilst holding the bannister to get hips tense enough to work.  Then I get dressed.  I used to have a shower at this point but it took too long and hurt too much so I now do it later at the gym.
Getting downstairs is scary.  I do it every day but it terrifies me and I never do it with Foal in front of me.  You see EDS means my knees and hips can and do give way randomly.  It feels like your leg is suddenly not there, the same feeling as when you walk up a staircase to the top then try to step on one stair too many, one that doesn't exist.  The body-shock that gives is the same.  If this happens I end up on the floor.
Downstairs I pootle around getting stuff ready.  Holding anything is very hard because grip pressure triggers pain in my finger joints.  Imagine everything you gripped being very hot.  You know, you can pick up hot things for a short time just fine, but then the pain builds up...?  that sort of thing.
Walking at this point is also tricky.  the muscles arent tense enough yet.  this is when I fell over this morning.
So once I have my cappucino and yoghurt sorted I sit and take my pills.  At the moment Indomethacin and Pregabalin.  The first was something of a revelation.  before taking it I was in a wheelchair.  Now, some days I look normal.  Pregabalin is a wierd one, which for me turns pain into itching or tickling.  any port in a storm.
Like many chronic pain patients if you asked me where it hurt I would think for a bit.  EDS comes with two levels of pain, the chronic and accute.  Accute is when a joint gives way and screams at you.  Think stubbing your toe x6, or being kicked very hard in the balls.  Chronic is there all the time.  At the moment my chronic pain joints are: left wrist, right elbow, right fingers, left ankle right knee, both hips both shoulders, thoracic spine.  They all hurt.  But I am adept at blocking them so it is only when I think about it that I notice.  Of course my body knows, and is exhausted by it.  That is why opiates are soooo goood.  When you take them you get immersed in a fluffy bath of  nopain.  I am currently opiate free, after years of being on them.  it was for complex reasons, including I thought it would save my marriage.  Ah well.  I am not averse to taking them again but I want to see how long I can exist without.
Throughout my day my phone goes off to remind me to take my drugs as they are not SR.  My phone is my pusher.
It takes around 30 mins for the drugs to kick in, so I have to cope with the pain al the way to Foals school.
My days vary.  I can do lots of things.  Some things hurt.  typing, for example is very painful to arm joints and spine.  But mainly it is transitions that hurt.  When i stop doing one thing and move.  This is because my joints have relaxed and moved into a position to accomodate one thing, when I ask them to change they realise they are not in their proper places...Never startle a zebra because if they cannot plan their motions they fall apart.
Just think about that for a minute.  Imagine that you MUST, MUST plan every movement.  No spontaneous moves, on pain of, well, pain.  How many times a day do you catch a falling object on reflex, or flinch, or duck, or sneeze, or come?  All of those can put you in hospital
At the end of the day I am exhausted from having to pay attention the whole time.  but the attention I have to pay keeps me awake.  So I start to relax...and then cannot get up because hip/shoulder etc.  Eventually I lever myself into bed.
Rinse
Repeat.
Now that is a good day.
Today is not good.  I have a very bad spine, hips unstable, elbows on fire, TM joint hurts.  It is all a bit shit frankly.
never mind.
Happy EDS awareness month.  Please tell people about it.  Maybe buy a cuddly Zebra.  Or offer sexual congress to one you may meet.