Going public.

Today I went public with my condition. By that I mean I "announced" to my local community FB page about my condition and how it affects me. 
I will add my public plea in a mo. I found it very daunting laying my self open to joe blogs and having parts of my private life no longer private. Those who matter know. But I want those who watch behind curtains and whisper "whats wrong with her?, why does she use a wheelchair? whats her blue badge for?" 
The main reason I did was to help raise votes for the National Diversity Awards that FND Hope has been nominated for in the Community Organisation Award - Disability

The voting closing on the 21st June so theres still time to vote HERE ;)

I had my first judgment stare as I called it last week. I needed something to cook for tea and husband was going to be late home, so I thought I will go to the local Co-op. Its small enough to wheel round slowly, I can pop a basket on my lap and the parking is right near the door, albeit the tightest space to try and get into!! Ironically!

I pull up, get my blue badge out and a older lady parks behind me and stops and stares, then comes along side me in the child space (there's only 1 child and 1 disabled bay) she proceeded to lean forward and look to see if I had a badge in my dash-either that or she had a stretch lol!! 

Anyway I got out and hobbled round to my back seat and got my chair out, unfolded it etc and sat in it and waddled to my door again and grabbed my purse and gloves. 

All the while being watched. when I sat down and wheeled myself round the front of my car she suddenly disappeared out of view LOL!! so I sat there a little longer til this head bobbed up and then back down again. 

Funnily enough, once she had realised I was "disabled enough" the space was mine to have it would seem! 

Why do we judge each other so much? there's enough hate and stress in the world without adding that to it :( 

Anyhoo, here's my FB post to my local group. I shall end this here for today as Ive just come back from a harrowing trip to the vets, everyone is ok bar my bank account but it has wiped me out and I really need to go to bed. 


HI, I was really hoping to raise a little awareness about a rare neurological condition I have as so little is known about it, and also to ask for a simple vote towards the group, FND Hope, who has been a lifeline to me since my diagnosis.
From that website I came across FND Hope and I found my 'place' I found people who understood how I felt, who knew exactly the pain I had, the fear of getting worse and they had also been given a name and that was it.
FND can be as debilitating as Parkinson’s disease and MS and have many similar symptoms.
Symptoms can come and go by the hour, they can last for days to months to years.
Very few effective treatment plans exist. Physical Therapy is the most effective form of treatment with a goal of re-introducing proper movement and motor control. The most common treatment plan is Cognitive Behavior Therapy (CBT), which yields a 13% 1 success rate. Yes just a 13% success rate. frown emoticon

In March I was diagnosed with Functional Neurological Disorder, I was given a piece of paper with a website scribbled on and told to go home and have a look at my condition and learn how to live with it. That was it.

FND provides an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically. Presentation may be similar to a wide range of other neurological conditions.

There is no cure. No magic pill to take it away. No one knows what the future will bring as so little is understood on it.

This is the background to FND, there is a lot more info on FNDhope(dot)org if you wish to read further into it. Now for my personal story:

FND has turned my whole world upside down, stopped me doing the things I love, if I do manage to do something I end up paying for it for days afterwards with worsening of symptoms and pain.

It's taken away everything that defined me and who I was.
In the last 12 months I have lost mobility, paralysis of left foot since December, 
Severe chronic pain throughout body that they can not find a medication to treat me for. I forget things so easily, I have crippling spasms and myoclonic jerks and movements.
A constant pins and needles sensation stabbing at my skin.

CFS/ME and Fibro have been suspected also and I am waiting to be assessed for both.
I was always the carer, now I'm the one needing care and assistance to do the most mundane of everyday life.
I can't shower alone, I've not had a bath for months now as I physically can't get in or out let alone lay in it!
I can't jump in the car and nip to the shops. I need someone with me to help with wheelchair and shopping.
Next time you go shopping see how many things you have to reach up for.
Can you imagine sitting in a chair and still reaching that item?
With FND hope I'm not alone. I have people who understand exactly what and how I am feeling.
Without them I'd be losing the plot somewhere. They really have been a constant support, day or night.FND is scary. Frustrating. Soul destroying. Embarrassing. Invisible. Unpredictable.
Please, just vote for us.
FND has kicked my butt.
Help me do something positive out of it. Help me kick its butt back for an award FND hope is hoping to win❤

 (sorry this is SO long xx)