relapsing sucks

blurredcarsIt’s been a while since I had a proper relapse, one that put me out of action, stopped me driving, stopped me working.

Well that winning streak is over as of Christmas. It started innocuously enough as what I thought was an exacerbation of my old optic neuritis and weakening of my arms due to a UTI, the strips in my bathroom said I was right about that at least and the doctor put me straight onto antibiotics. That bit was following the traditional pattern, nothing new, nothing to panic about and nothing to do but call in sick to work and wait it out.

I had to accept lifts or take taxis over Christmas to get me where I needed to be which was annoying and not exactly great for my independent pride. But pride comes before the fall, so I’ve been trying to put that pride into a box until I need it again and ignore the gut wrenching feeling that comes with thinking I’ve failed myself and others.

Annoyingly, this exacerbation seems to have turned into a relapse. For one day last week I felt almost ok, well enough to drive the mile into town to collect a prescription and buy some wool. That evening I think I already knew I’d made a mistake.

So tired, so much pain in my arm and my vision took a nose dive.

What a way to start a new year, flash backs to 7 years ago when the MonSter first gained a proper foothold in my CNS and was diagnosed. Almost to the day actually and with Optic Neuritis yet again 8O.

Well my Neurologist wasn’t brilliantly helpful yesterday, simply telling me that I needed to go to my optician, get a full report and send it to him by fax. If he thinks the results are low enough then he will give me a prescription for steroids (I’m assuming it will have to be oral not IV and that I am not looking forward to as I had trouble with them before).

visual pathway
yes this looks complicated and confusing, but it’s just a basic diagram of how the visual field if affected by different areas of damage along the optic pathway. A diagram so ingrained in my memory that I diagnosed where the damage was in my first bout of Optic neuritis before the GP even thought there was anything seriously wrong.

The opticians at Boots near me were great, I got in this morning for a full work up. Pressure testing with that lovely machine that puffs air into your eyes, pictures taken of my retina, full visual field test then in to see and try to explain to the lovely optician lady what was going on and what I needed.

It was nice just to know I wasn’t imagining things, I was right that my vision had severely deteriorated since I was last in to get my eyes tested in October. I’m not going crazy in that respect at least! She even redid the visual field testing again in more depth to double check the results and see exactly what was going on before sending it all off in a fax to Dr Lily confirming that I was right about it being Optic Neuritis if a relatively mild case. Now it’s just a waiting game to see what he thinks is the best course of action.

What I found out today worries me more than my own vision though! The amount of vision I have at the moment is well within the limits for driving 😕 She said I shouldn’t be driving at night so daylight hours only and short journeys that I may need to do but even that will be pushing it for me. It means that there are people out there driving around without a second thought about it who see the world through a foggy mess as far as I’m concerned! OK so I had about 20/20 vision even after the damage the other bouts of optic neuritis had done, it may not have been perfect but I had good sight and any change will always come as a shock…but really? people go out and drive like this?? I have been too scared to get behind the wheel of my car at all this past month or so and still will be for a while I think.

But then anxiety does have its plus points as loath as I am to admit it. You won’t catch me driving when my body doesn’t feel right, I won’t be behind the wheel of a car when I don’t trust my own nervous system to work, there’s no way I would risk that.

So for now I’ve had to tell my new job that I’m off until it goes back to normal, they’re being good about it I’ll admit but still my head won’t allow me to accept it. What’s worse it having to try and tell the parents why I can’t work with their children for a few weeks, that is making me beat myself up so much that I dread going back. No way to tell how they’ll feel about me supporting their children once they know


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