Far from Folsom Prison, that’s where I want to stay

Allow me to set the scene.

My vision has been (slowly) improving and my anxiety has been starting to ease back.  It’s a sunny Monday and I’m heading to specialist eye clinic for a follow up appointment and to get the results of the CT scan and MRI of my head.  I’m looking forward to getting in and hearing something along the lines of, “Welp, everything checks out, things should continue to improve, see ya later!”  A palpable sense of relief floods over me and with every step I take that brings me closer to the clinic I feel happier.  I can start making plans again!  I can go back to my life!  I can let everyone in my spin classes listen to me breathe like a rapist and gasp for sweet, sweet oxygen as I struggle to get through a 45 minute session after weeks of sedentary gloom!

Things are looking up.  I’m Johnny Cash about to be freed from my cell at Folsom Prison; about to see sunshine again since I don’t know when; about to drive my mental train a bit farther from the prison created by my own panic.  Man – I feel Zen.  As.  Fuck.

So, you can imagine it was a bit of a sucker punch when, after explaining what had been going on to a new specialist’s face, he told me he wasn’t convinced it was the swollen optic nerve.  And it was equally gut-wrenching when, upon realising I had been for brain scans and was eager to hear the results, he went to his computer to pull up the file and then, discreetly, turned the monitor away from me.

What transpired from my appointment was that there were abnormalities in my brain scan.  I can’t fault the guy’s bedside manner, but you know it’s never a good sign when you can see someone’s brain ticking away while they try and choose the right phrasing for the occasion.  The topic of multiple sclerosis was brought up again, though he made it a point to make it clear that this is not what he was diagnosing me with.  He also talked me through a range of possibilities for what the brain scan results could be (discounting tumors, to my relief, fairly rapidly).

As optic neuritis is closely associated with the onset of MS, and as my symptoms weren’t “textbook”, then the first thing to do would be to try and confirm whether or not the optic nerve was swollen.  For this, I have to have some neurological tests, which I am choosing to imagine will be 2 hours of Clockwork Orange-esque rigmarole, but will likely be much less terrifying.  If these tests reveal I have had swelling in the optic nerve, then GOOD: I know what the issue is, but BAD: MS is more likely.  If I haven’t had swelling in the optic nerve then GOOD: MS less likely, but BAD: what’s wrong with my vision, but also, what’s going on with my brain?!

Well, as the scan remains (for now) the only head scan I’ve ever had, there’s no telling how long the irregularity has been there.  It could have happened years ago and been asymptomatic.  Because my blindness in my left eye (from birth) is thought to have been caused by toxoplasmosis, there is also the chance that something happened there which caused the abnormalities.  Or, as the doctor said, “it is not outwith the realms of possibility.”

There’s even the possibility that what turned up in the brain scan is completely unrelated to what has been happening with my vision.  A final idea is that the vision problems are just physical manifestations of stress.  Now I’d consider myself to be pretty laid back and adaptable, so initially I scoffed internally at this suggestion, but the reality is a few years back, feeling no more under pressure than normal, I started suffering from anxiety and having very real, very scary physical symptoms.  The specialist I was in with even told me about how he ran clinical trials on 30+ people with optic neuritis, but he had been forced to discount the results of two participants – who he had diagnosed himself – as it turned out their symptoms were a result of stress.

So what was his advice for me in the interim before tests and more results could shed some light on the situation?  Try to relax.  Well, at least that got a laugh out of me.  Dude, you have got to be kidding – relax?!  Does that mean treating myself to “stressbuster” massages and Indian head rubs?  Does it mean turning all the lights out in my classroom and listening to guided progressive muscle relaxation tutorials on YouTube while I lie on the floor?  Does it mean buying a Himalayan salt lamp to ‘neutralise electromagnetic radiation’ which can – allegedly – cause stress levels to rise, affect your immune system, and lead to chronic fatigue?  Does it mean sitting at home alone at night and cruising tinder to find a human being to talk to in an attempt to avoid panicking by myself?  Does it mean trying to rebalance my chakra (whatever that actually means) by busting out some yoga moves in my living room? Because I have done all of those things, and while they might alleviate anxiety in the moment (and definitely beat sitting at home crying), they are absolutely not going to bring about a sense of calm that definitive medical test results will be able to.

Frustratingly, the first batch of those tests was scheduled to be yesterday, but I got a phone call in the morning to tell me that the doctor had phoned in sick, and my appointment was cancelled, with no indication of when I could expect them to be rescheduled.

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So until those tests happen, I guess I’m still stuck in Folsom prison, and time keeps draggin’ on.

7 thoughts on “Far from Folsom Prison, that’s where I want to stay

  1. Rachel – have you in my thoughts and hope that you get better soon… You obviously don’t know me, but I’m local who’s been reading your blog for some time in search of motivation (which I got plenty). I felt really sorry when you had trouble with your knee, but this time I’m wishing you all the best and hoping for the soonest recovery. I can only imagine how you must be feeling now, and hope that you got some family and friends around to support you.

    Just a crazy thought – I know you’re from Texas originally, and Houston has some of the best medical facilities in the US (ie in the world). Would seeking a consultation/treatment over there be an option? I appreciate that US healthcare is a very different ballgame to the NHS, but thought I’d just bring it out there

  2. Blah. Hoping those tests get scheduled soon because the not knowing sucks. And of course hoping that this all has a very reasonable and not medically complicated explanation.

  3. Too effing scary for words. Hope that by articulating your thoughts on this (in your entertaining and well written manner, if I might say so) you sort stuff out mentally for you. They say that the waiting is the worst bit. On the gloomy side, however crap the diagnosis, at least you know what you are dealing with; more positively if it is not as the black hole that you imagine at 3am, you can weep with relief. Hope that you find that life dishes you out more of the latter than the former.

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