C – CIDP

CIDP: Chronic Inflammatory Demyelinating Polyneuropathy

For this post, I’m going to write about what it means to me. This is majority based on what I’ve been told as much of it happened when I was very young. 

The starting point of the story was always a comparison of a few weeks before I started to become ill I was a flower girl at my Dad’s cousins’ wedding. 

From what I was told I was your typical show off 1 year old, wandering around with my wee dress on ‘chatting’ away to everyone and their granny, lapping up the attention. I think I walked down the aisle before the bride and so on with a wedding.

Not too long after, things started to go down hill. I kept falling over, became weaker, stopped eating as much and lost a lot of my personality and characteristics. My parents took me to the doctors and were repeatedly told that I was acting up because my Mum was pregnant with my brother and I just wanted their attention before it was split. 

I get that in a sense, right – but I was 1! Come on! 

It got to the point that they ended up taking a video into the doctors (who knows how in 1993/4) to show that the state I was in wasn’t just me being a brat, that there was something actually wrong. Thank god they persisted. 

I don’t really know how quickly my symptoms deteriorated. My condition is very closely linked to Guillain Barre Syndrome. Originally this was my diagnosis and no matter how many times I try to remember the difference, I always forget but as time went on I was officially diagnosed with CIDP. 

Again I don’t really remember loads about how ill I actually was. There are more photos which I will try to dig out for a memory lane post but right now they’re stored away in my Grans house. Basically I was lifeless.  

In layman’s terms, my understanding of what happened is that I caught a virus and my body produced too many white blood cells. Or my body tricked itself into thinking there was a virus. Either way I had too many white blood cells and as a result they attacked all my nerve endings and essentially destroyed my peripheral nervous system in my whole body. The peripheral nervous system is like the atlas (google maps) of the body. The only way it knows how to send messages from your brain around your body. My google maps was corrupt. Done. 

I could move no part of my body, my eyes used to roll around my head, I couldn’t eat, had to be squeezed to shit – the lot. I had a lot of tests and had a nerve removed from my ankle for observation but just really sent on my way. I’m not sure what follow up was planned but probs observation and physio etc. 

So as the story goes, one night I’m lying on the couch and my mum and dad are just chillin watching TV and look over at me to see Miss Thang (me) MOVE MY MIDDLE FINGER ON ONE HAND! 

I don’t think I’ll ever forget the expressions and way they both told me that story over and over. Breaks my heart a wee bit. 

I was given one course of intravenous immunoglobulin – still to this day NO ONE knows why I was only given one, v annoying. My body reacted well with this and it counteracted a negative or boosted a positive. Haha it’s hard to remember and I don’t have anyone really to ask 😦 

Following on from this, SOMEHOW my body started making slowwwww progress. I wouldn’t even be able to hazard a guess at how many times my rents took me back and forward to Yorkhill Hospital and countless other appointments. 

I had dedicated physiotherapy care to rebuild strength in ways my body was now computing. Standing frames, chairs, bed lifts, raised toilet seats, shower seats, crutches, wheelchair, splints, braces – you name it, I’ve probably got the t-shirt. I have learned to walk 6 times so far, hopefully no more – thnQ!

Here we are today. 

As it stands, if I am hooked up to an electrode machine which measures brain activity, IT SHOWS I AM PARALYSED FROM THE NECK DOWN. No word of a lie. I am unfathomably lucky to have the life I have, to be able to walk and talk and while there are a few things I can’t do – MY BRAIN COMPLETELY REWIRED ITSELF!

The machine testing shows up the normal signals sent from the brain when you lift your arm (eg). When I am attached, I lift my arm and there is no activity. This means my brain has found a new way to send the signal for me to lift my arm, that medical equipment cannot detect. 

My body recovered from the inside outwards, as a result I didn’t regain the ability to lift my feet up the way and so I wear splints to help me balance and walk. Sometimes I can climb a mountain and sometimes I can’t open a bottle of juice. 

It still baffles me that there was no rhyme or reason for me getting ill, it could have happened to anyone. It also absolutely blows my mind that my lil brain did that. 

No bad gal.