My battle with IIH

Last week I had yet another visit with my neurologist.

Those appointments aren’t exactly my idea of a good time. However last week we hit an all time low.

At my previous appointment a few months earlier, I was told to lose 3 more kilos.

I did that, bringing my total amount of weight lost in the last two years to 28 kilos.

I do not want to lose anymore weight. Mainly because I love cake, but also because I’m now in a healthy weight range.

After two years of battling to shove my IIH into remission, I think it’s probably safe to say if 28 kilos hasn’t done the trick, a few more won’t make much difference.

What happened at the appointment?

I won’t share the details of the appointment here because I really don’t want to re-live it.

Repeating it over and over serves no purpose. And besides, I’ve never liked looking backwards. I’m not going that way.

What I will say is that I was told – among other things – to lose more weight. And how it was said left me speechless and in tears.

Tears that I couldn’t stop for two days. I felt like I was trapped in a hopeless situation with no way out.

There is no cure for this IIH thing. No finish line.

Just a non-stop hamster wheel of specialist appointments and medication.

I’m so tired of

the ringing in my ears that never stops
the numbness in my face
the inability to balance on my left side – ever noticed my outfit photos are taken standing against a wall? That’s why.
the never-ending feeling of being exhausted
the inability to sleep
slamming down a Carona – diamox makes anything fizzy taste like metal. I haven’t had a beer, mineral water, soda water, soft drink in two years. Although I have managed to push through when it comes to a glass of champers 😉
not being able to remember things
sitting in thoughtless waiting rooms. Dead plants and retina burning paint colours don’t exactly scream ‘we care’
wondering if the old me will ever be back. She was fun! She planned awesome parties, loved to cook, could shop for hours on end and helped out at school. I miss her.

And breathe.

Because I’m ok. Really, I am. I hope you are too.

We all have something that’s a bit crap in our life. This just happens to be my something.

Where to from here?

I have a plan and it does not involve my current neuro.

A lovely member of our closed Facebook group – which btw you are more than welcome to join. Find all the details about Happy Healthy Beautiful You here – has given me some very helpful information.

As a result, I now have a referral for a new neuro.

After two long years of battling IIH, it’s time to get off the hamster wheel.

Here’s hoping I can do it.

My battle with IIH – an update for you