Well my attempt to go off my medication was a complete and utter failure.  I lasted two days. Two days full of pain and barely any sleep.  Dear gods, it was hell.  I decided it wasn’t worth trying to get off these meds when I found myself sobbing at 6am this morning due to the pain.

So back on the medication and hopefully since I was only off it for 2 days going back on the meds won’t cause me to walk into walls for a couple of days. If you don’t hear from me tomorrow, can someone check that I haven’t walked into a corner and am unable to find my way out?

I would be disappointed, but I just want relief from this pain and some sleep.  Obviously my meds are doing exactly what they should be and need to be doing.  My brain is still broken and maybe it might stay that way forever.  However, I will take my meds and put up with the lower tolerance to alcohol and dull reflexes that they cause to be pain free. I never want a repeat performance of the last 2 days.

Today, I’m going off one of my meds, the big one – my anti-seizure medication.  I’m living proof of better living through chemistry – my GP back in Australia labelled me as the healthiest chronically ill patient she ever had. I know that medication, properly taken, can be the difference between being sick and healthy.  But, I fucking hate my anti-seizure meds. Yes they gave me back my mobility, but I still hate them.  I probably should rewind a bit here before I confuse the hell out of you all.

Just over five years ago, I got a sore throat, felt like crap and had some pain in my legs, a week later I lost the ability to walk unaided and could not grip objects with my hands.  My arms regained their functionality but my legs never did.  My first round of doctors couldn’t find a cause and labelled me a basket case.  My second round of doctors including my awesome rheumatologist and GP fought to find a reason.  Lots of painful tests later they determined that the initial immobility was caused by a viral infection but afterwards a screw came lose in my brain and my brain refused to believed that my legs were okay so continued the ‘oh my god I’m in lots of fucking pain and my legs don’t work’ thing.  Anti-seizure meds were the solution.  They rewired my brain to the point that when I started the meds I walked into walks for 3 days.  Nothing funnier than a fat chick on crutches walking into walls, let me tell you.  I tried to go off them about 3 years ago and within a week I was immobile and in heaps of pain again. Going back on the meds sparked another round of walking into walls.  Even more fun the second time around.

So why am I doing this again?  Cause in the 18 months since I’ve moved to Germany I have not had a single relapse (yes even on medication I relapsed into lots of pain and immobility).  The goal was always to get me off this medication, if possible.  My beloved rheumy back in Oz wasn’t sure how long that was going to take but the end goal was always to be off this medication.

This evening I took my last tablet.  Now we play the waiting game.  Will I relapse or has my brain finally gotten its shit together? I’m kinda excited to see what the outcome will be.  I’m secretly hopeful that I’ve got this thing beat and I can close the book on another painful chapter of my life.  Germany’s been damn good in that respect, lots of book closing on nasty shit going on around here.