2016 in a nutshell

I'd written a HUGE post on a round up of EVERYTHING that's been going on.
But I forgot to publish it and 5 days later I've remembered and come to find out it's blank. FML!! Now that is a my life in a nutshell!!!

Tomorrow I shall sit down and concentrate on a blog post.
In some ways things have changed so much. In others very little.
I'm hanging on by the very tips of my fingers. I've spent most of 2016 fighting depression. My heart goes out to anyone touched or affected by depression. It's a terrifying place to be in your own mind.

Until tomorrow xx

SOS

Save Our Spoons!!

Or more importantly, Sary needs to save spoons!! SNTSS doesnt have the same ring to it though does it?

I am desperately trying to save my spoons this weekend as tomorrow there is a wonderful beagle fun day going on fairly local to us, they dont often happen this local and we went last year and had an absolute blast.
The beagles had an absolute blast also, they have a large enclosed field and we let all the hounds off for a 20 min run about and it was just breath taking and beautiful to watch so many hounds running around, howlings and arrooooing their heads off, ears flapping and trailing in the wind behind them, tongues hanging out and a real spark in their eyes :)

Mooky running about without a care in the world. 

Bella found it all too much and just began rolling about wanting a fuss. 

Last year, I did agility with Bella

There is nothing better than watching happy beagles just beagling,













The agility ring where we had a friendly competition between husband and wife.












Yesterday I had a pain physio session. I managed to get the right hospital first time, but I was 90 mins late for the appointment!!
I was due at 10am and I turned up at 1130 :O utterly mortifying.
Whats worse/scary is I had it in my diary as 10am and on my calendar and my phone as 10am but I was reading it as bloody 1130???
Being the lovely lady that she is she fitted me in at 12pm.
She has given me a couple of new exercises to try and do and what is so good is its not an impacting style of exercise, it's using a gym ball to re teach my body balancing as that is something I do tend to struggle with. I will often bang into walls or doorways as my walking gait means I over balance and clip things or knock them.
So lets give it a whirl and try, as I say it's far less impacting than the neuro physios exercises of hopping and jumping :/
I need to buy a gym ball so will try pick one up on Monday after the hospital appointment with Dr B for the pain clinic.

I might *big huge might* give it a whirl at videoing the exercises to then look back on and also for people to try themselves although I can not say whether they are suitable for others so obviously use your common sense and you know your body best.

My brain is starting to fizzle out as im finding it hard to type the right words and keeping on track with the sentences.
Im also finding it hard as im having a lot of flare ups of some symptoms. Such as the spasms and I had a wiggling toe all day yesterday and feelings of being tapped through my sole of my foot. I get v hot feelings in my foot also I feel my skin is sunburnt all over and tingling/fizzy.

XX

Technology vs FND

Why is my last post highlighted white on the blue background??
Ive tried to edit it but it is saying the text background is blue yet its not....me and technology do NOT mix well.
Well, not so much technology. just the nitty gritty elements.

Im looking at setting up a FB page linked into this blog, this could be a huge disaster LOL.
I couldnt set it up with my name of the blog, My left foot as apparently there is a film and a book based on this name....no, I didnt know either lol!!

Ok I've made a page. The internet is still working, so Ive not broken anything, yet!!

Alas, husband is now home and I shall need to look at least like Im not sitting about on my bum. Even if I am!! Quick, im watching Jeremy Kyle too. :O
Ill play about with the page tomorrow

S x

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) 

Art therapy

I find myself this last week or more getting lost in the world of art therapy.
For those who, like me until very recently have no idea what art therapy is or indeed involves, its relaxing and losing yourself in a project where the only stresses you have to worry about is what colour to pick next, or which pattern will you have a go at.

It is a wonderful way to shut down an anxious mind and to help take some of the focus off of pain, spasms and the wonderful fizzy tingles and channel that into a much calmer and more positive avenue.

Amazon offers a wide range of colouring books for adults.
This is a simply gorgeous book to use and was my first experience with art therapy and colouring for adults.
These are the pencils I have used on all my projects.

My colourful budgie 

Spirograph style flowers 

These are just two of the pages Ive done so far. With a mix of the pencils above and finetip pens.

I get lost in them and can find a couple of hours have slipped me by and Ive not been thinking about pain, stress, anxiety, frustration. You name it, im not thinking of it whilst doing this.

I warn you it IS addictive though :)

Happy colouring X

Never enough hours for sleeping

I can't stop sleeping. If you'd asked me 5 years ago would I like to spend the day in bed, I'd have said hell no.
There's too much to do and see, places to go, sleeps for the weak, I'm a long time dead to sleep then. You get the gist.
Now, I've not the energy to even contemplate doing things.
I am sleeping in until 1130/12 pm as a rule of thumb now.
I wake in a mindless stumble around 7, take my morning meds, lay back down and I'm gone again until lunch.

I'll then even sleep for an hour or so more if I've no appointments etc planned. If I do make it downstairs, I often lay on my pillow and go back to sleep again with the dogs!

I'm sleeping more hours than sleeping beauty!! I'm waking up like the beast however!

No amount of sleep is enough to make me feel refreshed or like I've charged up my batteries.

Weirdly enough, I'm incredibly envious of me 5 years ago.
I'm missing being that full on, enjoying life and doing things. Even work.

All I want to do is lay about, eating chocolate and shutting myself off from everything. I just want to be me with me. I dont want to keep pretending I'm ok to stop people fussing. I'm doing more harm that good that way.
I just want to be allowed to be miserable without the comments of being a grump.

Pain is the biggest factor to my moods. The more pain I'm in, the more moody I am. Which means the more people poke fun he less tolerance I have and that makes me more grumpy.
Repeat.

I keep trying to focus on my mantra of I've got FND, FND doesn't have me.
Lately it has though. Its taken everything and changed everything. There's not a bloody thing I can do about that :(
Is it any wonder I'm getting so depressed!?

I'm seeing a pain psychologist at the end of June. I've no idea what that entails or what I think about it.
I've v little interest in anything of late. Another red flag warning of depression. Taking hold, smothering me like a vine weed does in your garden. Until it chokes you.

Heads too fuzzy and body too fizzy to think much more today.
Screaming child in sainsbury earlier has set me off on a v bad day nerve pain and shudders etc. Back in bed. My own little world. X

Im meant to be getting better, not worse!

Im sure this is a statement many a FND'er can relate to, heck, Im sure its something a lot of people would say and feel whilst they live with a chronic and debilitating condition.

So yes, in the eyes of the medical profession, I should be getting better.
However they acknowledge and are watching me get worse.
My GP is quite alarmed by the decline in me from our last appointment Mid April, just before I was given the news from the Neurophysio that I had FND.
She saw the tremors and shakes I have and the weird shuddering sensation I get which makes me shake my head and trunk of body and let out a aaahhhhh sound (LOL why cant I give out a better noise than that, this just encourages giggles!)
Its like lightning flashes through my body from head to tip toe in an instant and BOOM electric blast along my nerve pathways and then a shudder which is the only visible sign of how it feels.
She's told me she will out a note on my file, if I call I'm to tell the receptionist I'm in trouble and she will either fit me in or get the Dr to call me.
That was a huge relief and meant a lot.
She has also started me on pregabalin, 75mg bedtime for 4 days and then add in a morning dose.
So far so good I feel. It will be up to 8 weeks before I feel a difference.

As a side effect or pure coincidence, I had a spell on Sunday where I was twitching and kicking out, arms flailing about and head jerks for about 3 hours over night. I was exhausted when I woke up and felt I'd run a marathon, on my hands and knees!

Tuesday I had the worst episode yet. Husband was out, my son was home with his gf and they were going out to the park whilst I made a chili.
I said I'll text when halfway thru and you come home and drain the rice and dish up.
I can manage to stir the pans sitting down.
They left and I went into the kitchen and stopped and stared.
The pack of raw mince was like looking at a rubix cub and trying to work out the method of matching all the coloured squares up. Impossible!
Sure enough I had forgotten how to prepare and cook this meal.
I became frightened of losing a memory, of losing something so important ,yet such an everyday action. 
I just looked at the mince and could not work out how to make it into a chili.
I began to panic. Anxiety grabbed my throat and made my heart beat faster.
My head was pumping and pounding and next doors child was screaming and kicking a ball against our fence causing me to jump and panic further.
I started sobbing, big grief stricken sobs from the bottom of your belly.
I slumped on the floor holding my head to try and stop the flashing images of mince, pans and veg as my brain tried to connect the things together.
My dog began scratching at the stair gate and howling. He snapped me out of my bubble and I went and sat with him on the patio doorway.
He came and sat as close as he possibly could and out his head up on my shoulder.
I text my son to come home asap and he text me all the way home saying he was nearly there.
He ran in and gave me the biggest hug. Like we switched roles and he was my parent comforting his daughter. I felt so protected and safe now he was home.

We also found I had left a pan on and has subsequently burnt a pan of rice into some type of charcoal mess!! I had no idea it was on or even burning.

When husband came home later that night and I told him what had happened he has banned me from using the oven if no one is home.

I feel so useless and dumb. How can you forget how to cook? It was like a light switch went off.
I'm hoping this is meds related.
I'm also being so forgetful in everyday things.
The brain fog and muddling words is back again.
Aren't you meant to come out of a flare up, in order to have another?
I feel one flare is merging into the next.

I dont feel I'm improving. Quite the opposite. X