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

Black clouds on the horizon.

Not a weather announcement. Its how I feel this week.
I'm finding the dark feelings are becoming more frequent and intense. I still joke and smile when asked if I'm depressed. Me, depressed? No no, I'm too stubborn for that. I'm too strong for that. I tried being depressed, its not me.
I've rehearsed it so often it comes out my mouth so convincing that even I believe myself!
Why do I do it?
I don't want to be labeled as suffering a neurological problem and depression being the key element they focus on.
I don't like admitting I'm not a strong as I thought I was. I don't like losing.

FND and chronic pain has stolen a lot from me, I dont want it to steal my mind too.
My identity has gone, who I am has gone.

Fatigue and pain has increased a lot this week. I'm finding myself weaker and less able to do things I could do last week. Getting up the stairs is getting harder again. I got stuck last night as I just ran out of energy and my left leg refused to co operate and move so my son came and rescued me and helped me back to my bed.
Ive also been having strange attacks of some form of episode?? I get intense pain and fatigue in neck and shoulder muscles. Followed by a cramp feeling. Then heavy arms and I need to lay down. It passes after about 30 min's. Its happened 3 times this week. The headaches have returned too.

Could it be due to attending the job centre for a back to work support interview and neuro physio two days in a row? Both utterly exhausting. Both entirely worthless. More on them later. Eyes burning and head swimming.

S x

Hoops

Jumping through hoops. That's exactly how it feels when trying to fulfill all the hurdles I have to overcome in claiming benefits. Not just benefits actually, but life in general. Nothing seems easy. Or straightforward.

I had my ESA assessment last week. Its was nerve wracking and stressful. Far more so than the PIP one! After a strained commute to the job centre at rush hour in the morning I arrived 20 mins early, I like to be early as opposed to cutting it fine, reduces stress. 

Getting across the one way system was harrowing! the nearest car park was across 6 lanes of traffic and two sets of traffic light islands. Due to this my mum had to come with me as I would never have got across the road due to poor kerbs and effort it took to get over.
Im finding this is the case when I want to go anywhere. My chair is fab for weight to get in and out the car, but to get up kerbs and even some door steps in shops I need someone to help tip the chair and get over. So im not quite as independant as I first anticipated. 

Back in the assessment place. It was empty when I arrived, that was good I thought. too early for drunks and nasties. Alas no. they soon began to flock in, I was terrified my ex, my sons "father" would walk in. But he didnt. 

The whole thing took over an hour of questions and examinations. I was shattered half way through and found it hard to keep up and nodding and shaking my head but not really knowing what I was listening to. I had mum and a support worker from our local hub and they were v good at keeping up and helping me get my point across. 

She agreed I have spasticity in my legs (the jerking and trembling on moving) and that I do clearly have problems. She also told me of another lady she had in a short while ago with very similar issues and she was going for in patient treatment at a hospital in london and recommended me to go and try it also. 

Now I am just waiting to find out the results of her report. It could be up to 4 weeks. 

I then had pain physio in the afternoon and was beyond tired that evening. The pain physio was truly wonderful. she totally understood. She was v kind. 

I see her again next week. I am keeping a diary for 2 weeks for her to see how I am and what I can/cant do. Shes a keen advocate of pacing. Im not sure how much more pacing I can do without coming to a complete stop! 

Tomorrow I have the neuro physio. Mums coming with me after a disgraceful appointment last time. She thinks she will have me jogging this visit!!! I can hardly walk in a straight line let alone jog ffs! 

Then thursday I am back to the dreaded job centre where I have to attend a back to work interview....Id like to see what kind of job they will find for me. This again is at 9am. I will need my mum to come with.

so the hoop jumping continues! 

A bad mix

Fatigue and envy. A bad mix, a toxic mix if you will.
Envying peoples lives and wishing yours could be as exciting or adventurous, experiencing different achievements and goals.
Yet being so weighed down by fatigue all you can do is watch on from the sideline, or remotely in the palm of your hand as you swipe through peoples lives on fb etc..  

Today I am bored. I've forgotten what boredom feels like if I'm honest. I don't particularly miss it truth be told, but I guess my days are spent relatively 'busy' in the sense I'm never doing nothing, wishing I was doing something. Or I'm not sat about with nothing to do. Surprising really after 9 months out of work!

Each day consists of various goals and to do lists, no where near as exciting as things I see others doing.
If its not hospital or Drs appointments, its assessments or form fillings and postings and prescription management. Frustratingly I am out of sync with 2 out my 5 meds, this means I'm often either putting in a script a few days after I've just picked up. I can't get back on track or they suspect me picking up too many meds. I discovered earlier I'm not entitled to any help with prescription costs despite being unemployed and unfit for work. Rather odd given most are unfit for work through medical reasons and require medication. If I was on JSA or tax credits I'd be entitled... I spend over £40 a month on medication and that's just the prescription ones. I buy various vitamins, over the counter drugs too. Soon mounts up as my largest out going a month is my medication.

I'm going off on a tangent, my days, that's what I was writing about.
I think today just screams out as a boredom day. Weather is pretty rotten. The dogs are lazing about. Everyone is tired and has a real CBA attitude.

I joined husband on the food shop today. I took my chair as on a Sunday more often than not I have to wait for the sainsbury chair to become available, so I was able to get in the store without feeling I was gonna drop down from exhaustion, no blue badge means parking furthest from the store currently.

After wheeling up and down each aisle I am weary and by half way round my brain is mush and here's no point asking me a question as you won't get an intelligent reply!

Right now I could happily have a nap. But then it upsets my night sleep so I best not. Ive got a beef brisket in the oven and it smells divine. Husband is on chief lifting out the oven duty and I'm on ladle duty.

The sun is beginning to break through the grey clouds. Maybe the boredom will go with it? If nothing else, I'll go sit in the garden and admire this cheery little flowers. They brighten up the day.

X

Brown envelope's

My last week has been consumed by brown envelopes falling through my letter box.
Ive been awaiting my result from the DWP on the PIP assessment I attended a few weeks back.
I had a phone call from them last Friday, to go over a few more questions and confirm a few of the answers and evidence I'd submitted, like dates I'd been in hospital. All the info I gave both prior to the assessment and on the day of.....
She told me I'd have an answer by the end of day and to expect a reply in the post within 10 days.
Every time I saw someone outside I hoped it was the postman, a few days passed. Bills came, election leaflets came (and went straight in the recycling bin!)

Weds (I think) yet another brown envelope arrived.
I opened it, almost with my eyes closed.
It was another letter asking for another sick note.. 

I emailed my local hub group. I think they are along the lines of the former disCass team.
They provide advice and support on a vast array of matters and I asked for their advice on what was going on with my ESA claim.

The following day the post arrived with a heavy thud. Several brown envelopes....
Shaking I sat on the sofa and started opening them.
The first was my award letter from the PIP. I'd been accepted. Or rather, I failed the assessment in the way an able bodied person would pass it.
I was given standard mobility component and none for the care element.
I was 2 points shy of being granted it.
I'm looking into asking for a reconsideration into it and I'm hoping I can get a few more bits of evidence from the pain physio this coming week to submit.

The other letters were another asking for a sick note. The day after the previous letter. A letter telling me I'd been awarded the ESA from the 21/02 at x amount and then z amount from 7th April, new tax year I am assuming? But as yet no money.
Whilst opening the letters a lady from the hub called me back, we went through the info I had in front of me and she has offered to come attend my ESA assessment weds.

I also have the pain clinic physiotherapy assessment weds at Frimley hospital. So a busy day for me.
I've filled in their pre appointment forms and the picture of the two bodies you have to draw where you hurt etc. Let's just say there's few places left unmarked lol.

Symptoms wise I'm having an awful few days. I feel full of static charge and painful pins and needles. Not the tingling kind. Stabbing repeatedly kind. My tongue is buzzing, my skin feels goose bumpy and bruised to touch. I keep jerking and twitching and the fatigue has been incredible. I could happily sleep the whole day and night away.
Friday I kept having a choking sensation, my throat would close momentarily and I'd cough splutter and gag when it opened. I'd did so randomly and was awful.

I'm wondering when this will ease, the drs were insistent in I'd get better.  As yet I'm not. But mentally I'm getting stronger. I cling on to that. Its not let me down yet x

Assessment and the Spinnaker tower

Saturday just gone I had my PIP assessment. It was in Portsmouth, which is about an hour away and 43 miles according to good old google maps. 
The weather was gorgeous but a little breezy. The journey down was v straightforward, just down the A3. 
Once in Portsmouth it wasn't as straight forward, the actual place we were going to, a physio centre, was hidden away on a business estate. It was a tiny building. Just consists of 3 rooms, the waiting room and 2 small office rooms. Quite oppressive really which only added to the stress levels I was feeling. It felt like I was taking my GCSE exams again and hadnt revised. 

We took my chair and I was able to stay in it throughout the assessment, having my feet on the footplates eases the weight of my legs and in turn helps with the fatigue and back pain. 
The lady was lovely, and she was only doing her job. I felt she tried to trip me up a couple of times, but again this is her job not her. 

I fear I've over estimated how well I cope, trying to work out how far I can walk unaided. We agreed 40 metres, but I'd be unable to walk it again that day and I would  be in incredible pain. But I would walk it as I'm buggered if I will give into this. 
On the CAB forms it says if you stand with both feet on the floor and feel pain or fatigue. You are awarded Max points. She cleverly didnt mention pain or fatigue, just asked if I could get to the car and back to the desk (40 m) 

So I am worried I've not painted a true enough picture of how I am, I dont want to make it sound unrealistic so I try and answer honestly. Husband agreed I was 100% honest and upfront with answers. I had no supporting evidence from gp or neurologist sadly, some say to show that as evidence. I'd imagine hell would freeze over before gp would help me :( 
My Fate is in their hands now. 
My next assessments is 6th of May. This is for the ESA claim so once again I shall have to jump hoops to try and get this. Why is it you feel you have to fight for something you need. Ive paid taxes for 14 years, when I need help I'm made to feel a burden and prove my illness is as debilitating as it is.

Afterwards as we were in Portsmouth and hadnt eaten yet and it was almost 2:45 we ventured towards gunwharf quays to find food. 
We found a nice place, a bar/restaurant called Giraffe right next to the Spinnaker tower 
Lunch was delicious. We walked round the shopping centre afterwards, I say walk, hubby pushed me as wheeling after eating is v uncomfortable! We didnt stay long, I was tired and it was so so hot and hardly a breeze at all on the coast, unusual as back home it was a v cold wind! So we headed home and got in just after 5. I headed straight to bed as I was freezing (I often get v cold when over tired and stressed) so I curled up in bed with a hot water bottle, my meds taken and before I knew it I was fast asleep! 
I woke up periodically for the next 5 hours, took my bed time meds and then I was fast asleep until 10:50 the following morning!! 17 hours more or less fast asleep! 
Its Tuesday today and I am still not fully recovered from it. 

Its daft, I did nothing more than sit about and go in the car yet it exhausted me. This is whats so frustrating about this condition, the most mundane and normal tasks are exhausting. 

I had another thing happen last week, Thursday I had a moment that I guess was realisation? 
I was shopping with my friend, and as I wheeled myself passed a shop, I saw myself in the reflection. Seeing me in a wheelchair made my heart sink like a stone and my tummy flip. Its upset me more than I'd ever imagine it to do so but I think actually seeing myself in the chair made it more real, if that makes sense? 
Maybe coupled with my friend being 20 years older yet here I was struggling to get in and out the car magnified it? She was a work colleague and I miss her and my job so bleeding much this week :( envy/jealousy/humility all in one go I guess. 
You know that moment you wake up and everything is ok, everything is fine for that split second before your conscious thoughts take over? I guess that's the closest I can describe it to.

I applied for my blue badge today. Its getting ridiculous trying to find a parking bay I can park in that gives me enough room to get my chair out the back of my car, I cant get it in my boot easily enough so it goes in the rear seats meaning I need to open the door wide to get it out/in. 

Now try picturing a carpark. how often do you find a space on its own? this often means I end up far away from where I need to be going and just makes things a lot harder from the word go. 

If im going to sainsburys I find it really hard as I use their wheelchairs as it means I have more room in my car, but I have to walk from the space to the inside of the store, this means im in agony before Ive even got in the store :( 

This morning I pointed out something to a garden centre I popped into. Its a typical store, two ways in and out, with automatic doors. All good so far, well when you go in the entrance there is a long walk around the displays before you get inside. Then you have to go around more displays before the tills and after the tills is the exit. Next to the exit are their wheelchairs to use..... I understand WHY they are there (people pay and get out the chairs before going thru the door) but they should keep an eye on it and move the used chairs back to the entrance. You cant go in the exit as it only opens from instore. 

I mentioned this to a till assistant this morning and she promised to pass it on. Ive mentioned it to a staff member in B&Q a few weeks ago. Same problem. Chairs at the exit rather than the way in! Most helpful. 

Anyways, thats enough typing for one day. Im going to hopefully add a few pics Ive either had sent or seen lately. I love them :) 

Jump around

Last week I ordered some dog agility poles from here and they arrived yesterday, v quick delivery and fab quality. I have the pink set (why not!) and the red,blue and green set.
After the beagles gave it a thorough sniff and inspection, I got my son to help me set the poles up. 

I was worn out just opening the package! 

Bella did her usual unimpressed scowl at what I was doing, she always appears to look down her muzzle at you as if everything and everyone is beneath her! No idea where she gets that from ;)
Mooky just tried to eat it!

I stumbled round the garden setting up the 'course', sadly my garden isn't very big and is rather uneven with a rotary wash line smack bang in the middle, so I was waddling around bent over with fluorescent poles in my hands. I swear my neighbours must think I'm nuts!

Once ready I called the dogs out, Bella took one look, turned and went back to sleeping in the sun on the sofa (diva!) Moo gave it a go though :) #proud

Admittedly it was probably the pumpkin biscuit ( I will add the recipe for the biscuits in here at a later date as they are easy to make and a rather nice healthier alternative to shop bought treats. he was after as opposed to suddenly becoming a agility star. However, he flew over each jump and I was able to 'play' with him and interact and be a dog owner once more.
I was able to stand on the lawn and lead him over the jumps with a command (over) and the offer of a snack. After a few minutes both he and I were worn out so we came indoors and both crashed out on the sofa for a while. Success!!

I had two hospital appointments yesterday. At two separate hospitals! I'll update shortly as I'm v sleepy right now and dozing off whilst typing this on my phone as it is. 

Edited to add in the hospital appointments. 

I had two appointments yesterday. 

The first was at the hospital I dread going to due to past experiences there, infertility and the admission in December. It was in the eye clinic and im pleased to say my vision has improved slightly since the visit 6 weeks ago. I tried (and failed) to explain FND to her and we have drawn a conclusion that a flare up/episode of this I had over the recent months is what triggered my fast downhill decline in vision and the nystagmus worsening. We cant be 100% on this but between us we have agreed. So, if I have further episodes and I notice vision declining again just to monitor it as nothing they can do as I refuse the op to tighten the eye muscle, If it continues to get worse or doesnt seem to improve then ring them up and be re seen. So for now, I have been discharged by their team and im happy with that decision. 

2nd appointment was held at a different hospital some miles away, I had been here once before and its a military hospital and is one of the nicer hospitals Ive been in. 

This was to see the pain clinic team again. The nurse was WONDERFUL, I really can not praise her highly enough. She was everything you want and need from a medical professional. Honest, straightforward and kind. 

We discussed what has led to me being there and I brought up how I had previously seen dr B and had enquired into my back pain with him as originally I was seeing him for my knees. yet gp refused the re referral 3 times :( nurse is making a point of investigating that with the surgery!!

So I am being booked in for a through check over with a pain physio to see where my pain is, where my problems are and what makes it worse etc. Then i am seeing Dr B and discussing a pain management plan. She thinks it will likely be injection steroids or similar again. I dont care what they do i just want the pain relieving again. 

I am also taking part in a workshop on psychological pain and how to deal with it (or something to that affect) she has said its a tick box type thing just to get gp of my case and show we are trying all bases. I have said i want to try any way just because I will try anything and who knows it may help?

She wants them to take over the majority of my care plan and I am very happy with that, I feel I am in good hands with them and I know they are approachable and knowledgable. I hope I keep this view of them, as so far my experiences with medical staff has been some what of a dismay! 

That is in a nutshell, what happened yesterday. So today I am mentally and physically exhausted and having a lazy(er) day than normal. the weather is gorgeous which as an added bonus tires the dogs out so lovely snoring beagles to keep me company :) 

Right, meds and loo break time. I try and coincide having to get upstairs with as many things as possible, or kill as many birds with one stone? Im worn out just getting upstairs so i try and minimise it as best I can. 

Adios x 

Feeling let down.

I have tried a few times to write this post, but doing so on my phone is proving too timely so Ive waited until I'd logged into my laptop.

Last week I wrote a letter to my GP updating her on my appointment with the physio. I think I posted that in here? Well I got a reply a few days ago.
She has said she knew all along it was FNDs but didnt feel the need to tell me of this as it would have no relevance on my treatment. She has disagreed with upping my amitriptyline to the dose the neuro has suggested (80mg) and said I can increase to 30mg from 10mg. I started this sunday and in a fortnight i will up again to 30mg.
She has also agreed to send me to a pain clinic but feels I wont get any use from trying a variety of meds especially as the ones ive tried havent been working. She thinks I will get more from the psychological benefits of the pain clinic.....

All in all I feel let down. I feel I poured my heart out to her and I explained how scared I was and upset at losing my job and independance. All along she knew but wouldnt tell me what it was. I just dont know how I can go to her again now as my gp as I wont trust her word.

Reading things on the FND group it very rarely looks like people recover fully. if anything people decline. With and unsupportive dr that feels so isolating and scary.

I also had a letter (same day) with a date for my PIP assessment. 18th April. In portsmouth!!! Thats an hours drive away :( Which makes me think its a trap and if I go all that way I then automatically write myself off as being able to sit up for lengths of time :( Its such a daunting thought of being tested for my abilities, if I fail this i get left with no income at all and no way of getting a job as I currently am. The welfare system is currently a scary place to be, everything feels scary to me of late.

I should be out and about enjoying this gorgeous weather, care free and enjoying the time off my husband has just had for Easter, feeling like im his wife rather than a burden or a drain (both financially and emotionally)

Ive got another physio session today, im pretty sure it will be a quick check of how im doing the exercises and off on my way again within 10 mins like it always is......it never feels personal.

Mentally I am a lot stronger today/this week. I think spending time with husband last week really helped. Also having a car sitting there I could use when I needed is another boost. Ive not been off on my own yet bar picking up some meds the morning after I got her.
I am also more with it until I get tired and then I get the brain fog and forgetfulness. The other day I forgot I was baking biscuits and left them in the oven!!! I only realised when I smelt burning. I was totally oblivious to what I had just been doing and didnt recall making them :( Im also finding my cross stitch harder as I will do stitches and when I go back to it none of it matches the chart I am following and im more often that not undoing it rather than stitching! So maybe im not as mentally sharp as I thought LOL!!!

So there we go, its a glorious day out again and once again I am enjoying it from indoors. But I do go and sit in the garden with the dogs every now and again. Even if just for the change of scenery! Thats reminded me I am going to look at some agility equipment I can use in the garden for the dogs. If I can tire them out during the day for hubby it helps lessen the load on him. I can just sit out in the garden with them and call them over jumps. Be good training and bonding for us. This was me last summer. When I was much more able bodied :( Makes me sad to reflect back.

Remembering

Life. Quite a deep and poignant first start here!
But yeah life! Some times its wonderful. All colours and sparkles and glittery s***. Other times its cold, dark and cruel.
One person makes me feel of these things towards life when I think of her.
Today marks 5 years since a very good friend lost her enormous battle with cancer. 5 years since my phone beeped and those awful words were there in black and white. You'd gone.
She was the epitome of full colour/HD/ living life kinda girl. She was kind hearted and so gentle and wise. She was her sons universe. Not just his world. He has autism and she, quite literally was his everything. Then she was gone.

Refused a smear for over a year as she was under 25. Despite all the warning signs she was still refused as medical professionals deemed her too young to have cancer. As soon as she was 25 she had her smear. Within days she had the news she was stage 4.
She had just married her childhood sweetheart. Less than 11 months later she passed away.
She tried everything to fight it. But it had spread and took her.
Our little friendship bubble became duller that day. 03/04/2010
Always remembered Ally. Rest in peace sweetheart. Xxx

Learning your limitations

Is something I need to do! I keep pushing myself to do one more thing or just finish this before I collapse. I'm not juggling the fatigue side of things, which isn't turn increases the symptoms side of things and subsequently this affects the fatigue levels. Its a snowballing cycle. One feeds the other in turn feeding the other. Repeat.

I met up with a friend for lunch today, its so nice to socialise outside my bubble. I currently only have my mum, husband and son on a day to day basis to speak with and most of that is done before and after work/college leaving me relying on social interactions online. I miss the face to face feel of things.
But anyway, we went to town and I'd normally go with her and not take my wheelchair just as its awkward asking to put in her car or its usually only a lunch in a garden centre, normally situated at the front of said centre.
But invariably she likes to wander round and browse and I end up texting dh saying I'm in agony and just want to come home.
Once the pain takes hold I can't enjoy myself and I'm counting the minutes until I'm laying on my bed again and trying to calm the monster that is pain.
This then wipes me out for the rest of the day and sometimes into the next.

So yes, today was a lovely mooch around town. I'd taken my wheelchair with us, and it made all the difference. It was however a pigging nightmare to get around. The majority of the shops have a door step meaning I couldn't get the chair over the plinth (?!) There was also lots of items blocking aisles and boxes and 'things' around the tills. All in all it was harder to get about than it was easy.
Quite shocking really given this day and age. The pavements were also SHOCKING! very uneven and cobbled in areas which meant it was a narrow area to wheel along.
Throw in people who wouldn't move out the way or just cut you up or worst just stop I'm the path and then tut loudly if you almost hit them! Also so many hills and lack of pavement drops made it a rather fraught trip. Shame really. My arms were exhausted afterwards.

I came home and then joined husband and the two dogs for a gentle stroll in the sunshine. The wind is incredibly strong today.
This is actually a blessing when walking along as it helps push me, however coming back and having it face on is rather rotten as it makes it many times harder. None the less, I made it, came home and went over for a lovely meal at the in-laws and I drive home.

So I am shattered, not long in and ive come straight to bed. I feel im burning the candle at both ends. My legs still buzzing and ive also had cold left leg from half way up the shin to toes. Little bit concerned over that.

Ive done no physio or exercises today but I shall tomorrow. Today I just need sleep. Ive used up so many spoons trying to just
Have a life and I'm now beginning to suffer for living it as my family and friend does. I forget I'm not as normal as they are.

Right I keep making spelling errors and my eyes are burning. So good night xx
.

Scary flare?

This is more for a reference for myself than anything else, this evening whilst eating tea, my throat kept feeling tight and I was coughing to clear it (ended up inhaling rice coughing so much!)
Finished tea, it was a chicken curry, so soft food.

Went and sat on the sofa, got myself comfy and bam! Deep pain, like sinus pain, in the very top part of jaw, where it hinges with the skull.
This spread along the bottom jaw and was spreading like it was in my face. The pain was intense and I just burst into tears. Poor son and husband didnt know what was going on. I couldn't open my mouth properly to speak and just rocked with the pain, blowing out deeply.

It didnt last long. No more than 5 minutes, in that time I went v hot in the face to touch but I didn't feel hot. I wasnt flushed either.

After that it just ached to move my mouth but it loosened up in about 15 mins. It was then just like a wisdom or tooth removal ache u get after being at the dentist with your mouth kept open for ages.

I *think* its because I have been grinding my teeth constantly. My teeth dont feel set in my mouth and then I bite down they "sink' into my gums. Then just as u do when u have a sore or loose tooth and u keep sticking your tongue in it, I keep biting together. I'm also sucking in my cheeks like you do when pretending to pull a fish face?!! I do it without realising. Its almost a 'tick' ive developed.
The dental hygienist I saw on Monday has urged me to see dentist asap as I am chewing the inside of NY bottom lip badly (when I bite teeth) and its left deep indentations in the lips. Same with the top lip. Ive also bitten the cheeks to but not as bad

I can't help it though. I'm constantly gritting and biting my teeth together, I'm also picking my lips to pieces, ive two big deep sores where I just pick til it bleeds heavy, now it hurts to eat certain foods as it stings the sores.

Husband has noticed ive increased this obsessive repetition of picking and biting :(

I feel ok now, just aching jaw up near ears.

I've over done it by miles today. I think ive used the next 3 days spoons up let alone today's! Tomorrow IS going to be lazy. Once ive done the food shop....

BST begins in 3 hours :D I love the lighter nights and dawns. All the birds singing. Pity the weather can't pick up a little again.....anyways I can feel the meds starting to make me sleepy and my arms and fingers ache typing this in my phone. Xxxx

Spoon's

Ive found a wonderful analogy on what it'd like to live with pain and fatigue vs someone without either.
It explains the way we (the 'sick', dont like saying that but brain fart has meant its the only word I can think of currently!)

Having to weigh up the choice between doing tasks, menial and well as more complex, and work out if the outlay and effort on a physical and mental (and emotional depending on the task) level is worth what you get out at the end.

My dog does this, no in fact the both do it!! Maybe I'll nickname it the beagleism! Is what I tell them to do, or not do in most instances, worth the reward at the end. If they carry on as they are will they get a better reward or if they do as asked will I give them a better reward.
For example, asking her to recall to me. Have I got something (treat) thats better/tastier than the smells/items/freedom she's got if she carries on running around?
If so she comes, if not, she buggers of howling as if to say stuff you :p

So yes this theory explains very well how each everyday task is a spoon. Once you start spending your spoons your pile of reserves diminishes. Until you are left empty handed. In our case, exhausted, in agony, causing a flare up of multiple symptoms.

Now imagine that every day. All day. Forever. I dont think I'll look at spoons the same way again lol!!

I also think it highlights one of the harder consequences of this disorder. I'm pretty sure ive mentioned it in previous entries. Where ive spent the last decade and a bit always on the go, busy busy busy, never spending quality time with family, always working and to go from 100mph to 5mph is a huge change.
Initially its nice to rest. But then cabin fever kicks in, you begin to itch for the mental stimulation of juggling everything.

I used to live by a clock. With my work, each client I had, had X amount of time allotted, if I go over I'm eating into client #2. I had to be very focused on time management. Meals ready by xyz time, meas eaten by ABC time or I'd be late to my next shift.
Days off began to get made into time allotted tasks. I'd have to get up early and do everything by 9, be at the shops for 915, 920 at a push. So on and so on.
It drove my husband into the ground :( it became so stressful living life constantly battling time and making sure I and completed each task.
I never ever allowed myself time. Quite literally just that. I would punish myself for relaxing. I would feel wasteful and useless doing nothing. So I'd push on.

Now I look back and think what a waste. Life's too bloody short. Ive missed family occasions, holidays, hell I even worked 8 out of the last 9 Xmas days and I only sent work this one as I was just out of hospital and unwell. I'll never get that time back again. But I wont waste it again in the future either.

This blog I fantastic for my mind. Its really making the grey matter ignite and light up. Keeping the thing ticking over. Therapeutic also.

Anyway, ive several spoons worth of tasks to complete today, sitting here won't get it done x

Having a beagle kinda day

Odd title, but im having an odd day I think lol.

Ive decided today I will do as my beagles do and laze around. More so than usual I hear!?

Well yeah, I joined hubby and the two dogs on a walk last night round the block. It would take us 20 mins max usually, once upon a time ago.....Last night it was 87 minutes, how do I know this?? I paused the programme Fortitude which started at 9pm and when I came back it said 87 mins paused so there you go. Ridiculous amount of time but I DID it.
Hence the slow lazy day today.

That said I have already driven son to college and I need to empty my car of everything (how much stuff can u fit in one little car!!!!) go back and collect him from college at 2:45 and then take the car to the valet people and get it properly spruced up ready to be handed over, gulp.
Ive then set myself the task of cooking a roast tonight, so reading back hardly a quiet day is it!

I had another letter this morning from ESA people. They were claiming I still hadn't sent in a sick certificate fom gp for the weeks after 27th Feb. I had sent it in and so as this was the 4th letter I have had from them I called. Im shocked I rang and was only on hold for 3 minutes and it was all dealt with very quickly and within 10 mins done and dusted. It was an automated letter whilst they were processing my claim and she said they still haven't set up the claim (they had had to rebuild it?) so she said i will get another letter in the next day or two! BUT they DO have the forms so dont worry.....famous last words???


i have joined a group on FB for the FND forum. The stories and support is incredible. Its equally horrifying how much people have to go through to be believed and "treated" Its opened my eyes to just how little the medical field knows about the human body at times and how hard it must be for people to go years fighting for answers? I think thats the hardest part of this illness, and maybe others also. The need for answers and having to fight and claw your way to them.

A cousin posted this on FB and I found it very useful, I especially find part 2 and 8 are close to me and my heart. I am lucky that for the best part hubs and son are v good with me and do everything they can to help me.

Ill have to leave this here for now, as I must go and empty the car and pick son up (this has taken an hour to write!) and my dog is laying curled up in my lap and meaning on my poor bladder which is beginning to feel a bit full!!

TTFN x

Vella doing her best at keeping me resting <3

FND

Ive been googling a bit more on this FND or FNS depending on which country I think? Ive found a few videos which sum up perfectly this whole disorder/syndrome, I dont know the correct terminology??
Some need the volume down as they have annoying loud music/songs lol

Functional Neurological Disorder

The hardest hitting link. This sums up me. Its the battle you face

Finding people who are like a mirror image of myself is just heart breaking and relieving at the same time. I dont feel alone but I also feel sad others are where I am or in some cases worse that I am.

Struggling today with the black cloud over my head. Trying to get my head around it all, what it means and if its forever. Im fighting to pull my thoughts up but today I just have to let them win. I need to ease off the whole fighting to stay positive and going. Its ok to buckle and its ok to be down.

The most "daft" thing I have found today and I text my mum in tears was its common to have  ahead tilt in FND, for the last 2 years each photo ive seen people post of me in facebook or twitter, my left side of my face looks rounder and more obvious. Its a head tilt. My head doesnt look straight on. For ages Ive scrutinized pics, asked ppl not to post them as i became so aware of it. Now I know Im not nuts. Its daft but remarkably huge for me. Ill link in a pic of what I mean.

I am exhausted today. x

Anticlimax

I feel I'm in an anticlimax bubble. I think after fighting so long and hard for answers to finally have something pretty concrete is both amazing and disheartening.
Like the evening of Christmas day, you've waited all of December for this day. When it comes its over quickly and the bump is quite odd.
I'm thrilled to have something I can label myself under, if people ask what is wrong rather than say 'bad back' which 90% of people joke "back oh yeah me too....." Almost belittling your pain. Or I say my foot forgot how to foot. Its fallen out with my brain. I try and make it lighthearted as a) its not morbid or terminal,in the grand scale of things its rather trivial in terms of the medical field. Although its had a huge impact on my life and of those around me. But b) I have to keep it jovial or I'll be sucked in and never feel I can climb that mountain. I'll never conquer it.

I said to the physio yesterday something which summed it up perfectly.
My pain controls me, my pain is managing me and limiting me in what I can and can't do. I avoid certain things like sitting in the cinema watching a film. A huge no no for me currently, going out for a meal, I can't sit comfortably at a table. Or I wont go somewhere as I know I'll hurt and pay for it in the following days.
I said I want to manage my pain, I want to control it.. I need to take back my body. She agreed that summed it up perfectly.
Hence the pain clinic needing to be involved. As she agrees my current pain management isnt working and my gp hasn't followed through on the Neurologist report in regards to upping my amitriptyline from the current 10mg to 100mg a day. yeah not a small increase, a large one yet gp won't sanction it!
I'm going to write gp a letter just outlining the above from my physio, I dont need to see her face to face for this. Its a waste of her time, an appointment slot and means I sit for up to an hour on uncomfortable chairs in the waiting room.
My gp is never ever on time. The longest ive waited to go in is 1hr 10 minutes! Infuriating when you've grabbed an appointment between work calls and u are now running late. Plus I dont think I can face talking out loud about all this. In here I can say what I want. If I get upset I can close the page for a bit, walk away or google something funny. In the surgery I'm stuck. The thoughts in my head get louder and I get so anxious.

I also can't fully agree that this functional symptoms'disorder' is what I have.
It doesnt explain the long term symptoms ive had. The flare ups of pins and needles in arms, weakness in the arms brushing hair/teeth. The spongy foot feeling. All this goes back about 6 years give or take.
The back pain has always been there in the background. It only ever really plagued me if I was over doing it. Like a shopping trip round town. Lots of walking as hills (our town high street goes up a v steep hill and is cobbled. Nightmare!) And standing about hurt my spine. The pressure would build as that sharp pinch would almost wind me.

In those 6 years I've seen 3 osteopaths. 2 chiropractor's and the pain clinic man for my knees. All told me to seek referral for ortho team as my backs wrong/causing problems.

CFS or fibromyalgia also fits perfectly. The flare ups, the symptoms.

So I can't decide if I fall into this labelling or continue searching for the correct diagnosis (if this one is indeed incorrect)
Its just all to inconsistent. The letters being different between neurologist and me and neurologist and physio. Being told several different causes and often the we dont really know aspect of things.....

I just want everyone to agree on the same diagnosis, formulate a plan of action and to manage this. As I said earlier I'm not life limited in the time aspect, but I am limited in what I can now do.
This time 2 years ago we did a 14 mile walk for the Royal Marsden Hospital. Counting in the walking to and from the event in London we walked 17 miles according to my fitbit stepometer thingy.
This time almost last year (well June) I drove the 400+ miles to Cornwall and back for a weeks holiday. I walked the headlands, stomped around on the beaches and ran around with my dogs. Less than 3 months later I could hardly move my left leg let alone walk properly.

The more I think in terms of that, the angrier I get with my body and myself. At 34 this isnt the lifestyle I wanted. I miss my job so very much. The interaction with people constantly, the aspect of care tasks, being able to do things for people and not give anything a second thought. I miss the busyness I had. The constant on the go element. From 6am til I finished work at 10pm. Now my brain and body just rots doing nothing. Eurgh.

So on that gloomy moany note, I'm going to have a doze. Yesterday has caused a lot of pain in hips and thighs. My legs shake like a wobbly jelly and mum was shocked at the state of them. My back is also killing. So I didnt sleep well at all as I couldn't get comfortable. So the usual black and dark circles I have under my eyes to the last few months have grown larger and more noticeable. I look like a extra in a Tim Burton film!!! :')

X

A Diagnosis???

If this doesnt make much sense its cos my head is rather foggy at the moment. A combination of really being pulled about (in a nice way!) with the physio and being made to carry out tasks etc and pain going off like a siren in my head and the meds ive just taken to try and ease it. 
I am also a snuffling,snotty mess as I feel a lot of things have come and hit me like a bus today. So a good old cry will solve everything. 

I came away from the appointment feeling once again dismissed and let down almost, she gave a different opinion and even the letter the neuro has sent her is different to the copy I got!! 

He's not mentioned the infection at all as a diagnosis. Instead he has said its Functional Neurological (or something functional I cant remember) She wrote down a web address to go home and read and she felt I would connect with parts written. 

I text DH the link to the website Welcome - neurosymptoms.org and after a few minutes I got a text back saying Its me, the entire page is exactly me and everything I have ever said or mentioned. All in one place under one name. 
I didnt believe him but I have sat down and read through all the symptoms and all the knock on effects of each and its like reading things ive posted here, things i have said out loud-Dh particularly pointed out the spasms I get which I liken to the feeling of someone walking over my grave is written exactly that way. 

"Most people have had the experience of jumping or jerking as they are dropping off to sleep. These movements are called 'hypnic jerks'.
Most people are also familiar with the random body 'shudder' that some people get. This is sometimes described as 'walking on someones grave' because of the way it moves quickly through the body". this is what I get daily. Ill link the video of it later. 

It lists everything,

• the eye problems

• gait problems walking with one stiff leg being heavier

• the small steps taken as if on ice

• the left hand side being the more commonly affected whilst the right is uneffected.

• functional tremors

• dissociation and zoning out

• pain

• fatigue like CFS

• headaches

• slurred speech and forgetting words

• Fleeting sensations - including twitches, buzzing sensations, electric shock sensations

to mention just a few! all the above I have mentioned on here previously. 
I cant begin to describe how it felt reading something which people are now thinking fits what I have and that it actually fits better than "infection" I just burst in to tears. Ive said to gp I feel u all think its in my head, theres a whole section on this website that says you feel it is BUT it isnt. Its very real. The pain is real the symptoms are real. 
Its all the symptoms of a real neurological disorder such as ms or stroke yet physically theres been no damage to the brain or nerves. But the brain (for unknown reasons) interprets the body in to thinking it has and giving u the symptoms. 

It also mentions how to deal with people and jobs/benefit applications with this disorder.

• It may be that your main problem is fatigue in which case calling the problem 'Chronic Fatigue Syndrome with functional neurological symptoms' may help define it for everyone.

• If your main problem is pain, calling the problem 'Chronic Pain with functional neurological symptoms' may help define it

I kinda wish I had known this prior to the applications sent off but I will call them tomorrow to update. 

She also pointed out GP really should be following the neuros letter re the medication and up my amitriptyline massively. She said that would make a big difference. Shes also said to ask her to be sent to a pain clinic. So I will write a letter to gp and pop it in tomorrow. I dont see the point of another wasted trip to her when I can just put it all in a letter and ask. Ill keep a copy as well so if this referral or meds doesn't improve I've got proof I asked for it as well as neuro. 

She kept focusing though (this is my one complaint, admit it, you knew there was one coming lol) on saying i waddle like a penguin as im convinced my body is too weak to hold me up and im scared of falling?? I said thats not something ive ever thought would happen. 
Sure my legs feel like jelly but as i said to gp I dont feel ever to the point where i would collapse or fall. But she kept insisting I was adjusting my walk to protect my leg?! 
I said Ive walked with a waddle 5+ years. 
It used to take about 3 miles before it really kicked in with pain and fatigue or by the end of a really busy shift but not once was it fall related its always been pain. 
My knees were sore I walked funny which hurt my back..... nope she would bring up the "dont be scared you'll fall" speech when standing. Even mum tried to explain it but she was fixated on it. The orthopedic I saw some 5 years ago said its my back causing my unusual gait. Hey ho. She was shocked when I told her it was one of the orthos from the same hosp we were in....I also got slightly shirty when she said the pain i had in foot which has now gone has left me thinking i need to walk funny to avoid hurting it ( my foot never hurt) and if I had been seen sooner it could have been corrected before it got this bad......I pointed out ive waited 14 weeks for this appointment and not through want of trying either. 

I dont really know what to make of it all. Ill just keep digesting it I think for a few days and go from there. Knowing what I have going on is real is a huge relief. Knowing it may or may not improve and has turned my life upside down is harder to accept long term.

1. You have something common – you are not weird
2. You do have something genuine – you are not imagining it
3. You have symptoms that are potentially reversible
4. Its not your fault that you have these symptoms
5. But you will need to put some effort into getting better

The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.
Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst.
If you stick to the SAME level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this SAME level of activity may make you just a little less tired than it did before, or cause just a little less pain.
You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing
So, Ive been given some more core strengthening exercises to try and do 3 times a day. I see her again on 7th April. In the mean time, who knows!