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An Update On Me ;)

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I can’t walk anymore without walking sticks, crutches, my wheeled walker or I also now have a mobility scooter.

I have funny jerky movements, and can seem to have a tremor at times.

My left leg jumps a lot, due to pulling in my abdomen, my hip or the calf muscle all spasming.

My neck, throat and chest muscles spasm badly more now than they used to, leaving me with terrible chest pain and a tight constriction in my voice. Leaving it hard for me to talk at times, if at all.

I’ve had spasms in my back, left shoulder, arm and hand since 2006. They cause me large amounts of pain, as my back muscle spasms nearly constantly and can at times throw me backwards without notice.

My mouth seems to be constantly dry, and sipping drinks all day does little to help.

I have an annoying flickering left eye, which I was given a diagnosis of Blepharospasm for which I get Botox injections every few months.
It has travelled and it was only a few months before I started with the Hemifacial Spasms down the same left side of my face. I have had injections at the top of my cheekbone, and side of my mouth where it droops.

I have ringing in my left ear most days, sometimes regularly and for differing lengths of time. I’ve had this ringing called Tinnitus for as long as I can remember.

The muscles in my calves, my back, and up side and back of my neck can make me scream in pain and agony.

My neck can jerk and twist around suddenly, or some days it seems to bob gently up and down or sideways.
I have a lot of pain in my neck, up the back and the muscle at the side.
Even though I have told my Neuro Consultant and have enquired about having Botox for the pain, I am still just left to endure and live with it.

On top of this I have Sleep problems, make terrible sounds or stop breathing.

I have Non Epileptic Attack Disorder, where I can have fits without notice.

In May 2013 one Saturday evening whilst sat chatting with my partner, I went into violent spasms and convulsions where he got me onto the floor for safety.
I have no recollection of this event at all, he waited a short time as we are told I am “Non Epileptic” but he couldn’t get me to answer, I was not aware at all throughout the seizure. So he rang 999 for help.

This ended with me being in hospital for 4 days, I had apparently had the seizure go on for an hour and a half until I eventually came round. I didn’t know where I was, and was upset to find myself in A&E.
I am told I was aware for only 20 minutes before I went back into seizure, again for another hour and a half!
By this time I had tubes, gas and air and the Drs and Nurses all looking after me.

As I say I spent the following 4 days in hospital, during which time I had 3 more seizures and a head CT scan which came up clear of anything that would show to give a reason for my seizure attacks.
They had to let me go home, with a note to pass to my Drs.

I have never been tested for if they are actually Non Epileptic or actual Epilepsy. It puzzles me!?

I have Chronic pain Syndrome, making me cry most days to relieve myself of the anguish.

I have terrible Gastroenterology problems, which I have had to go into hospital to have abdomen surgery re: two hernias I’ve had.

Some days I can wake paralysed, or with partial paralysis. It can take me hours to get my body to move, and I’ve found the only way to do it is to concentrate and try to move my body from the extremities inwards.
When my limbs begin to move, I give them little work outs (up and down, up and down) it is to make them remember what they are supposed to do. You may find this weird, but it really is what I have to do. Then I massage my legs or arms, wherever has had the paralysis.

Rarely I can go paralysed in the daytime, or have Drop Attacks after being out.
I think it’s my body saying it is exhausted, and needs to shut down to repair.

I get extreme fatigue, I am always tired no matter what time of day.

All mixed together, this is my life!

I have no idea how long I have to live like this, but I live one day at a time but hold on to hope that one day I will get better.

It is very hard, and I know at least it’s not life threatening (well apart from my breathing stopping in my sleep! Or hitting my head in a NEAD fit!) but I keep going. Just the same as others out there with my same disorder keep going too.

This disorder definitely pushes the boundaries of sanity, but it is not a mental disorder.

Andrea x

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