Don't judge a book by its cover

This is what I think of all the judging!

Ok so I have got my ranty tanty pants on.  I am sick of it, completely and totally over it! The judgement that is.  I have written about judgey mcjudgey before on here and you know what I am still done with it!  Straight up I am going to say that I am as guilty as anyone of judging but I try very hard to not do it and to live and let live.  Honestly, unless someone else's actions are going to impact me or my family directly or put a child in harm's way (or an animal) then seriously I just don't know that it is my place to judge.

Looking at Facebook for me is a great way to quickly catch up to speed on what I have been doing and saying over the last few days.  Your activity log has a wealth of information that only you can see, if you have ever thought you did/said something or liked something and weren't sure check it out there, it is great.  I check it every day.  Yesterday all over the news feed was this letter from the Head of a school in the UK asking parents to re-think their dress when coming into the school for assemblies and meetings.  Now of course I had something to say about this.  

We are super lucky at our school we have a kiss and drop zone (though some parents forget it is drop then drive off but that is a different rant for another day! - and yes when you don't drop and drive off and hold up all the traffic I am going to judge!) This really means I could if I so chose to jump into the car drive the kids up to school and drive home and roll back into my bed all without getting dressed.  Of course there are a couple of issues with this currently the main one being I don't have a drivers licence so the rest of this applies in the before or in a theoretical sense.  

It would seem that Kerri Sackville (love her if you don't read her writing it is time to look her up!) shared the same article and there were some interesting replies.  They varied from the silly and funny, to the serious reasons for not being able to get dressed to the Judgey McJudgey.  

I have included a variety of them here for you to read: 

Unless the house was on fire in the middle of the night, I would never wear PJs outside. I cannot understand how these people justify wearing their night attire to school assembly. The notion of public wear and private wear should be pretty clear by the time you're about 3 years old.

Ummm what about swimming costumes? in particular, bikinis? I live in Qld. I have a pool. I jump out of the pool, grab a towel and literally get into the car to pick up the kid. Also, some days, I take him in my pyjamas and pick him up in my pyjamas and if anyone is going to complain that I am still in my pyjamas at 3pm my generic response is, "Sure, I'll start dressing to your standards when you find me a cure for Parkinson's."

I agree. I just couldn't bring myself to wear my PJs, or even tracksuit pants, in public. Two of my kids are also twins and even during the newborn stage I got dressed for school drop off!

I don't think I ever got out of the car in pjs. That's why it's called 'drop off' ... And flannies are very comfortable. It's not about a schedule. It about comfort, esp in winter. It's like people who wear Lycra. They're comfortable wearing that or jegggings etc. I couldn't care what other people wear. It's their business. Not mine.

That's just plain laziness to leave your home in Pjs. No respectful person would do that!
I have never left the house in pyjamas, & nor do I ever intend to. I'm one of those annoying people who think wearing shoes when you're out is a good thing too.

Thank god it's not a note about wearing underwear on school dropoffs #serialoffender

The thing for me is that I am coming from a very different position in the now to the before.  In the now life is pretty confusing for me first thing in the morning.  It takes me a while to get my head around what is going.  Frankly if I need to drive the kids up to school in my PJs I will.  I might pull a jumper over the top but honestly most of the time there isn't a whole lot of difference between my PJs and my day wear.  The biggest difference would probably be that my hair is brushed and so are my teeth and I have shoes on.  That said in the before I am pretty certain I wouldn't care what you wore to school and if I did notice and it was out of the ordinary for you I would maybe ask if there was something going on and could I help somehow, and if it was normal more power to you I wish I could care less about what other's think! 

Though some days that isn't a guarantee I have been known to jump into the car with slippers on thinking there were shoes in there only to discover on arrival there are no shoes, so slippers it was that day (and that was at work!)  Equally I once jumped in the car and did not notice that my thong fell off as I got in until I got to the shops.  As I had spent 10mins getting the twins and #1 in the car I was going into the shops for what I needed barefoot.  Judge me if you like but frankly some days it is just like that.  

Mrs Woog (another amazing writer for you to check out) shared this great op ed piece about the letter from the school and the responses were varied here is another sample: 

I agree with the letter the prinipal has sent out. I think it's really sloppy and lazy to wear your pj's to drop your child off at school...the principal even said some parents would turn up to assemblies and meetings with teachers in their pj's. How innapropriate. And embarrassing. Its also teaching your kids to not put in the effort when they go out and about and to not have pride in their appearance. I definitely dont look like princess mary when I drop my kids off and no one else should either- but c'mon. Pj's to assemblies and meetings with the teacher? Tacky tacky tacky.

There's a time and place for everything.We encourage our kids to wear clean uniforms and be proud of their school so why not the adults dropping them off?Get up 10 minutes earlier and throw on jeans n a top and change into pjs when you get home.

Bring back the 90s when we were allowed to wear petticoats as clothing without receiving warning letters. Bring back the 80s when a wider variety of body images were acceptable. Bring back less of whatever this is. If someone thinks there pjs are cool and awesome and they want to wear them, then go for it. If they want to wear a cape then go for it. What wear in their own time is none of my business.

Nah, I've picked kids up from work in pjs many times. And *may* have ventured to Coles on more than one occasion in my "good" pjs.As long as the kids are fed, clothed, LOVED and actually sent to school, it's nobody's business how anyone else dresses. More kindness & tolerance and less judgment would be a great thing. We don't always know what's going on in someone else's life.

That brings me to another brilliant article I read today by Anna Spargo-Ryan about why she could speak up about mental illness (in her case) but really it could easily be applied to any invisible illness.  Anna is very open about her long-term struggle with mental illness but she says she can do this because of the privilege of her position in society.  She is fortunate to be in a dual income household and has the support of loving family and friends.  Anna works for herself these days so she does not need to disclose her illness to any employer but when she did, Anna had an awesome response where they recognised that she was more than her illness and did everything to keep her and work with her.  

Over the last 12mths I have been on a road to discovery of my own mental illness issues.  Like Anna I have also been incredibly fortunate to be able to do this from the position of having an incredible support network around me and whilst we are not a dual income anymore we are fortunate that we can make what we get stretch to cover our outgoings.  And like Anna I hide my illness from everyone including myself.  You would not know looking at me how I am feeling inside and that some days it is everything I have in me just to hold it together to be here.  You can never, ever know what is going on inside (be it a mental illness or a neurological illness or anything) just by looking at someone - always remember "don't judge a book by its cover".  I am not nearly even close to being in a place where I will need to disclose this to a prospective employer or employer.  Too be honest it is so far away I am not worrying about it (which makes a huge change for me!) 

You are probably thinking "Cath you have really lost it this time - how can you link these stories?"  Easily really and it isn't a huge stretch.  Schools are judging parents and lots of other parents for not wearing "appropriate attire" into school for assemblies and meetings.  Honestly, in my experience when I was teaching sometimes just the very fact that the parent showed up for the meeting or assembly is a big deal.  There are plenty of parents who can't be there (but want to more than anything!) for any number of reasons, there are parents who turn up dressed to the nines just so that everyone notices them and there are parents in between.

Has anyone when making these huge judgements about "they should take more care in their appearance," "get off Facebook and get dressed," "set a better example for your kids," ever actually stopped to think what might be going on in the life of someone else.  Seriously, we can never really know what is happening in someone else's life.  We will only ever know how much someone wants us to.  But the person judging about people not caring about their appearance might not know that at home mum and dad are dealing with a terminally ill child and they honestly don't get five minutes to themselves to get dressed before racing everyone out of the door to get to school on time.  The alternative is that they do take that time but by then their terminally ill child needs more attention and before you know it they have been up since 4am and it's lunch time and the other kids haven't made it to school yet again.  So in that instance is it not better that mum or dad just comes as they are rather than not at all?  

In my instance that five extra minutes I spend on Facebook instead of worrying about how I look could mean that I can actually hold a conversation with you in the playground instead of looking great (or real in fact just mildly presentable.) Then I hide up the back hoping you won't notice me because I have forgotten your name and other things we have in common because I spent the time doing my hair and getting dressed instead of working out who people are.  

It never fails to amaze me how people love to say set a better example.  How about this, someone battling a silent or invisible illness (to you) is setting an amazing example for their children.  They are showing them that no matter what, regardless of how hard it is and how much you don't feel like keeping on going you keep pushing through.  No-one would dare walk up to a parent in the playground who might be quite obviously battling say cancer or in a wheelchair or something very visible and say oh why don't you put a bit more effort in to set a better example for the kids, they say things like "isn't it great you could make it!"  And they truly honestly mean it and don't even look at what they are wearing!  However, when it is something people can't see or don't understand the judgement comes in more.  Honestly, I know people have said to me you are looking great.  Sure on the outside but don't probe too deeply I am likely to crumble like kinetic sand or melt away quickly like the wicked witch right before your eyes.  

Next time you are tempted to judge someone on their outward appearance, stop, think and maybe just accept that it might not be what you would do but they are doing the very best they can.  We really need to stop judging each other and start empathising more honestly you will be happier for it.  Maybe I have given you something to think about.  

Here's a funny story about me back in the late '80s-early 90s I loved both my footy and going out dancing.  It was never appropriate for me to wear what I wore to the footy to the nightclub (I mean of course I could but seriously as if I would lol!) so I would take my red slip with me to change in the carpark at the footy and pop on my heels and go out for a night of dancing.  The thing is my ruby red slip was a nightie!  It was sold as lingerie but honestly it was too pretty for that!  More recently I had a wedding to go to when my twins were about 4mths old I felt frumpy as you can imagine so my mum took my shopping for a nice dress to wear.  Guess what we found a beautiful Lisa Ho slip dress that in all seriousness looks like lingerie!  Perhaps I was just a girl before her time.  

Hugs 

Cathy xoxo 

Video - Boys Don't Cry - The Cure 

Approximately 300 new days ...

I was searching the tv guide this afternoon to see what is on tonight and what is worth watching.  I got to Ch7 and stopped looking 50 First Dates with Adam Sandler and Drew Barrymore is on.  I used to love this movie.  I used to think how romantic that Henry loved Lucy so much that he would get her to fall in love with him over and over everyday.  I also used to think it was sad that she couldn't remember all the wonderful (and slightly crazy) things he did for her.  Then (spoiler alert) it is revealed that she keeps a pretty detailed journal.  Of course, because it is a rom-com she falls in love with him, and they find a way to make it all work with her memory loss.

I say I used to love this movie because I am not so sure anymore.  For me it hasn't been 50 First Dates but much closer to around 300 new days give or take a week or so.  I started writing in a journal on Mar 9, 2015 but according to hospital information I went into hospital Feb 17, 2015 and as I remember none of this time at all I am not sure when everything started.  I am living this every day and if I don't read my journal or notes in my phone or diary or read over Facebook and messenger I honestly have no idea what is going on and I am stuck in about May 2012.  That is when I can tell you my last solid memory is.  I don't know why I am stuck then I know it was around Mother's Day which is just after mine and my twins birthday's I know what that memory is and I can almost describe it down to the clothes we were wearing that day and the food we ate.  Of course that doesn't help me now, today in January 2016!

The image where Lucy is showing Henry her journal 

So much has happened between then and now.  Some things really wonderful like as a family (my parents, my brother, sister in law and three nephews and my family of five) headed off to Disneyland in Anaheim.  I honestly have no memory at all of this trip.  I have lots of photos which is great but to me it is someone else's story except somehow all the people in the photos are my people.  We got two new dogs, wiped from my memory.  I need to be thankful it is only dogs that we got, and that we didn't have another child like Drew does in the movie!  My hubby has changed jobs last time I remember he was working shift work for a completely different company not the case anymore, he has also grown a beard which looks great except that I get a shock every morning when I see it!  My kids are significantly older (clearly!) I look different, I mean I know we all have days where we look in the mirror and can't quite reconcile that the person looking back at us is really you, we all think we are younger, less wrinkles, less grey etc.  Try looking in the mirror and having completely different hair sometime in the last 4 years I have cut it all off, and it would seem I am in the process of growing it back well today at least.

What I can tell you now living with this short-term memory loss and no apparent memory creation (though it is thought that I am somewhere making memories they just aren't in a place I can access them at the moment according to my journals) is not nearly as fun as it appears to be in 50 First Dates.  It is hard reading over journals from nearly a year ago and having no real connection to what I have written so I have to guess from what I have put down what I mean and what is really going on.  Try it for just one week, try to write down all the things you think are important and then the next day in reality you could hand your journal to someone else altogether to read and get them to work out what is going on and how you are feeling.  It is really hard work!

Today I read back over a lot of my journals some of it wasn't important at all but some of it was incredibly important and very sad really to read.  It got me thinking about has anything changed?  I found a blog I wrote back in July last year and here is some of it because really I think there are parts of it that are exactly the same as I feel today.  

The truth is for me I don't really feel like a whole lot has changed.  But I am very reliably informed that things are getting better at least physically.  I think that the physical progress is much easier for others to see change in.  For me I don't remember what I was like yesterday so it is hard to know what the progress is.  I can tell you that today, I am walking around with the aid of a walking stick, I felt a bit wobbly at times but I got from a to b which I guess is the most important thing. - I am still using the walking stick I still feel a little woozy but I also have a very sore big toe!  Apparently I managed to get a hairline fracture in my big toe!  Seriously only me! My arm I understand has also been a problem today it really just felt weak and it just takes more to think about using it.  I had tingling in different parts on my arm and face as well.  - My arm seems to be cooperating significantly more than it must have been in July because I am knitting again.  It still feels a bit heavy but it is working.  

Emotionally I am not sure that a whole lot has changed.  I read that I am being treated for PTSD, Depression, Anxiety, Dissociation, and a few other things.  For me this really just means that most days I feel sad, empty, a total ache in my heart (this is hard to describe really), anxious, overwhelmed and confused.  In addition to that I am exhausted from feeling all of those feelings all the time.  Plus I spend a lot of time (well I have today) trying to work out what is going on.  I guess if you think of all those mental health things and the brain as a computer hdd, my hdd needs a reboot.  So for now my brain is operating in safe mode, while the repairmen (my therapist and I) take each file out process it dertermine with this is something that needs to be kept or moved to the trash and then re-format the hdd.  I think this is going to be an incredibly long process but best we take the time and do it right than do it quickly and have to redo it in a few years. 

I think the most common thing everyone wants to know is if my memory has improved, I don't think so.  I woke up this morning completely confused, my head feels empty, I didn't recognise our dogs, my husband has to orientate me to what year it is and how old the kids are and what is going on in a really quick space of time.  Lots of changes have happened around the house and in our lives that I simply can't recall.  So I would say no this hasn't improved or changed.  I get through each day by reading facebook a lot I know this seems crazy but it does give me clues on things that have been going on.  I think that my memory loss is the hardest part for me.  Anyone who knows me knows that I don't cope very well when I am not in control and not remembering yesterday and not knowing what is coming without reading a journal or a daily diary is probably as far from in control I could possibly be. - All of this is still pretty much true for me.  I probably appear ok, or pretty much normal, from what I read I think this is partly because I am getting better at covering or making sure I read up as much as I can before I have to interact with others.  I know there are comments on how much time I am spending on Facebook but honestly it is fantastic to be able to bring me up to date in a really quick period of time!  If you ever need to remember something check your activity log! 

I think we made it through Christmas and New Year ok.  From the photos I have seen from this time it looks like I had a nice time surrounded by our families and it looks like NYE was a great night surrounded by family.  My writing tells me that while I was exhausted we managed to make it through pretty much ok.

Watching 50 First Dates it is very apparent to me how much my family loves me and especially my hubby.  Every morning it seems that he brings me up to speed with the most major things and then leaves me to read if I want to.  It is truly exactly like every night my slate is wiped clean and I start all over again.  It is really hard for me each day, but I can only imagine how exhausting and frustrating it is for my hubby and kids having to remind me every day what is going on.

I am off now to probably find something else to watch because even though it has been on while I have been writing this up it is really kind of depressing for me because it isn't nearly as much fun for me or the family in real life.  One thing I do know for sure is that my hubby must love me to keep doing this every day!  

Somewhere Over the Rainbow - Israel Kamakawiwo'ole

hugs

Cathy xoxo

12 Days of Christmas

I have over the last 12 days been following along the Black Dog Institute's 12 days of Christmas.  They have been sharing tips on how to make the holiday period less stressful.  I thought that I would simply collate all 12 into one place and share them with you.  

Day One: Work out priorities, keep a list
Prioritise tasks in order of importance and tick them off when they are done. Make the tasks realistic- don’t burden yourself with impracticable goals which will only stress you out.

The festive season is a great time to make the important people in your life your top priorities and attend to these relationships.

Day Two- Think before you agree

We often agree to situations to meet other people’s expectations. There is no better example of this than the holiday season, when we try to squeeze everything into our diaries.

Practise saying “no” to requests that are unreasonable or more than you can handle at the time- rather than suffer subsequent regrets and stress.

Day Three- Practice Relaxing

Take time out for yourself and focus on breathing deeply.

Pay attention to each breath in and out as they follow rhythmically one after the other. This will ground you in the present and help you to move into a state of awareness and relaxation.

Day Four- Identify your Stressors

Make a list of events which leave you emotionally drained. Once you have identified your stressors, connect each event with one or two ways to reduce the stress.

When these situations then arise, use them as an opportunity to practise stress reduction techniques such as deep breathing and note what works for next time.

Day Five- Take your Time

Don’t let people rush you.

Frenzied activities lead to errors, regrets and stress. If you feel like you are being rushed, request time to orient yourself to the situation before proceeding. Where possible, plan ahead and arrive at appointments early, composed and having made allowances for unexpected hold-ups.

Day Six- Set aside time for exercise and recreation
Allow time for yourself. Gentle repetitive exercise such as walking, swimming and cycling are great to relieve stress brought on by the inevitable end of year rush.

Or perhaps you would prefer some meditation, yoga, Pilates and dance? The trick is to find what suits you best. Hobbies that demand your attention are also valuable as they can provide a much needed sense of individual achievement and satisfaction.

Day Seven- Think Positively.

Smile whenever possible, you will be amazed at the difference this can make to how you feel.

If a difficult situation arises, try to walk away with a positive thought, this will help you deal with stressful times in the future.

Image by Matthew Johnstone

Day Eight- Watch your alcohol intake.
It’s easy to get caught up in the festive spirit and sometimes a drink or two can feel like the solution, but this is only temporary.
Drinking can create more problems in terms of physical and mental health.

Consider moderating your alcohol intake or switching to a healthier alcohol-free alternative like coconut water.

Day Nine- Perform small acts of kindness

Performing five kind acts a week creates a measurable boost to levels of psychological well-being. Giving not only makes you feel good about yourself, it enhances your connection with others and can bring you positive feedback from others.

Day Ten- Don’t do it alone

For some of us Christmas can be an overwhelming and occasionally isolating time, but we don’t have to do it alone.

If times get tough pick up the phone and talk to someone you trust. Or if you need help, don’t be afraid to contact one of our friends:

Lifeline: 13 11 14
beyondblue: 1300 22 4636
Kids Helpline: 1800 55 1800

Day Eleven- Live in the Moment

Try this one minute exercise: Sit in front of a clock or watch that you can use to time the passing of one minute. Your task is to focus your entire attention on your breathing and nothing else, for the minute.

Have a go- try it now.

Day Twelve- Have fun

It is important to not get caught up in all the festive planning and forget to enjoy yourself. Join in the festivities, be a bit silly and have fun!

Tis’ the season after all.

I hope that these tips help just a little bit and most importantly remember you are not alone. 

Cathy xoxo

Functional Neurological Symptom Disorder (FNSD)

Here is the third of the posts talking about some of the issues that I am currently dealing with.  Please remember these are simply my writings about my personal experience from my journals if anything in this raises concerns for you please see your dr or a medical professional for help.

The first two I dealt with the easier of the four major issues I am living with (though they might be easier to describe they are not necessarily easier to live with.)  This post will deal with Functional Neurological Symptom Disorder how that is affecting me and then I will deal with the memory and cognitive issues in another post.  

Functional Neurological Symptom Disorder is a big long name that describes a big long list of symptoms that occur due to a problem with the function of the nervous system and how the brain is sending or receiving messages.  It has also been referred to in the past as Conversion Disorder (the brain is converting the message into something that the body isn't receiving correctly) or Somatoform disorder (we have all heard the term psychosomatic before - meaning it is a disorder relating to the interaction of the brain and body.)  What we know is that with Functional Neurological Symptom Disorder there is no physical damage to the brain such as tumour, MS, stroke etc.  If we think of the brain as a computer then the brain itself is the hardware and the nervous system is the software then Functional Neurological Symptom Disorder is a problem with the software and not the hardware.  The good news with this is that for the most part symptoms of Functional Neurological Symptom Disorder are not permanent and in time with the right targeted therapy or even just time alone you will get better or back to normal (better and normal might be different to what they were in the before FNSD world though).  

What are the symptoms of Functional Neurological Symptom Disorder?  There is a huge long list of different symptoms such as hemiparesis, limb weakness, headaches, etc and if you are interested I will include a website that has a lot more information that you can read.  My particular symptoms are that I have functional left side weakness (or hemiparesis), my arm and leg are affected, they feel different in fact if I had to describe it I can actually feel them and I am extremely aware of every single movement my arm and leg make.  If you think about your limbs I know for me I am not conscious of how my right arm or leg work/move I just use them to do what I want and they do it.  But my left arm feels like it has a heavy, heavy weight sitting on it and to get it to move I have to think really hard sometimes it works and sometimes it doesn't.  I was told by my physio today that my leg movement is improving out of sight and that I am no longer dragging it as I walk, which is all good news.  

To get around I am using a walking stick so that I don't fall over though that has happened a few times and my arm even though it kind of works is incredibly weak.  A strength test that I did today with the Occupational Therapist measured my arm strength in my left arm as approx 1kg and my right as 26kgs.  Though my walking stamina on a treadmill has increased and I can now get up to 16mins which is a 10min improvment on 8 weeks ago.  I now pretty much had full range of movement with my left arm it is still a little weaker and every now and then feels numb but mostly my arm is good.  My balance and dizziness is still a huge issue so I am still using the stick and I am not good at judging distance so I seem to be forever hurting my left foot. *

This means for me that getting around is very slow and sometimes my arm/leg don't do what I think I am telling it to do  and it takes a huge amount of concentration to acheive the same task with my left side as my right side.  At the moment I am not driving, and we don't know how long that will be for.  I can't carry anything heavy in my left hand like a cup of tea and walk across a room because the concentration required to tell my leg to walk and the concentration to tell my arm to hold the cup compete!  We tried this at OT and I spilt the tea!  Showering, drying myself, drying my hair, doing pretty much anything that requires two hands is not happening unless I have figured a way to do it mainly with my right arm and using my left for support.  This has all improved greatly!  I can shower and dress and wash myself most of the time but I am still using a chair and hand held shower most of the time it is just easier.  I am cooking most of our meals and I can certainly carry a cuppa which is huge!  All of that said I don't do anything except make and carry a cuppa, when there is no-one home in case I fall over or loose my balance! *

As you can imagine this is all incredibly frustrating for me and the family.  I hate relying on other people to do things for me and I am sure that there are times that they get annoyed having to do lots of things for me!  Of course this loss of independence has a huge impact on my mental health and if I didn't already have issues there I am sure I would now coping with this!  

I am lucky I had a good dr who recognised what this was very early and was able to ensure I got the right approach to treatment.  For me that is a multi-disciplinary approach, OT, phsyio, psych, neurology, neuropsychiatrist.  I am only seeing OT, physio and psych on a weekly basis and the others as needed.  The challenge with rehab is to ensure that I have the right balance between doing enough to ensure that there is improvement and not too much that I go backwards.  

Functional Neurological Symptom Disorder is for the most part cause unknown.  The researchers think that for some people stress and past trauma can have an impact however, this is not the case for all people so why some people will get this and some people won't is really unknown.  Though for me from reading my journals I would think that stress and past trauma have played a huge part for me.  Most definitely if there was no psychological issues that were part of the cause they would certainly become part of the problem with the time it takes for diagnosis for many people.

My psychologist thinks that I have been in one way or another manifesting symptoms of FNSD for years I had a period of hysterical blindness where my eyesight couldn't be corrected with glasses to be legal to drive but it corrected itself this was after a particularly awful trauma, I had about 12mths with no voice after an incredibly stressful period in my life, I have always been a migraine/headachey person.  In all of these other instances the symptoms eventually self resolved when either my brain had processed the trauma enough to be able to cope or let go of the stress enough to move forward.  This is typically not how it works.  There is no causal link between x and y causing z.  There are often lots of contributing factors and even the immediate pressing trauma, grief, incident, stress etc could actually be another symptom of FNSD and it is in fact accepting that there is a neurological condition and treating that will aid recovery most.  Obviously if there are other issues that are pressing and need to be dealt with it is important to work on those as well but generally working on the psychological issues alone will not resolve FNSD.  

In my case it is thought that something came to a head this in turn reacted with all the other past trauma including some of my closest relationships, muddled everything up in my head and started sending out muddled signals to my arm and leg, so it was almost as though my brain was in one big constant panic attack and didn't know how to stop the cycle.  I understand that I spent significant time in hospital addressing the physical symptoms, and I was discussing with my psych today that I get this sense that there was this feeling or expectation that if I just accepted and faced up to my issues then I would be back to normal and better.  I can't be certain I really have nothing at all to base this on and I don't even know what hospital I was in or who was treating me.  So it is a strange thought to have.  She actually affirmed what I was saying and that is most definitely a common misconception about FNSD, people and often these are our treating physicians or those closest to us just want us back to "normal" or "better".  What is normal and what is better in the after of a FNSD diagnosis can be very, very different to what would have been "normal" or "better" in the before.  

The reality is for me and many like me the "event" that was the end result that appeared to be the "cause" of the FNSD but is thought to be really another symptom that also needs to be worked through. So in my case facing up to my demons helped more with my psychological recovery (which still has a long, long way to go and is ongoing) than my physical or cognitive symptom recovery from FNSD.  Either way it was and is an important thing to do and whilst it might read like I am writing in code the truth is I do not know or understand or remember, the how, what, why of the event.  I know (through my journals and sessions) that this has been resolved and everyone has moved forward.  I may never get access to that part of my brain to give me that information.  My psych tells me that all I really need to know is that it has happened and dealt with and it is time to move forward.  Time to start finding the "better" and "new normal" for me.  These could be very different from the before me and could be difficult for people around me to get used to as regardless of what the cause was I am different and I am changed as I process the things in my head.  

Most importantly, I am improving as hard as that is and as slow as the recovery may feel (though too be entirely honest I don't remember yesterday so maybe it isn't that slow at all!) I am improving.  Of course as with any recovery I have good and bad days which is to be totally expected, but hopefully there are more good days and less bad days.  Typically people tell me I look really good better than they have seen me looking in a long time so I MUST be doing better.  The truth is I know that my illness is invisible and that because it is invisible it is hard to understand.  There are no physical outward signs (except my stick for balance/dizziness) and I probably do look better because I am finally getting help for my misfiring brain.  Sometimes people can think that an invisible illness is a "fake" illness but the truth is that for most people with any type of invisible illness (could be neurological like Parkinson's or MS, Dementia, FNSD, or psychological like depression, anxiety, bipolar or something else like Crohns, Chronic Fatigue, Epilepsy, Seizures, Endometriosis or more) they are actually faking being WELL, because they are over their illness just as much as you are.  

There is a long way to go in gaining a wider understanding and acceptance of FNSD both within the medical community and with patients themselves.  Often the hardest thing of all for patients with FNSD is that they can feel incredibly alone and isolated because they have never heard of FNSD, their Drs may have a limited understanding and most importantly others have never heard of FNSD.  The single most important fact to remember about FNSD is that IT IS a neurological condition, and it has at this point no known cause, it can have a psychological component for some people but not everyone.*

Further reading can be found at www.neurosymptoms.org

www.fndhope.org

Here is a video put together by an organisation in the US FND Hope that also explains it a little bit.  

*  Edited 29/1/16 to add all the new information that has been part of my psychological recovery and more information I have learnt about FND.