5 Fandom Friday – 5 Ways You Grew/Changed/Evolved in 2015

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  1. I’ve started trying to be more empathetic. Trying not to take other peoples moodiness too personally and also giving them some quiet time or recognising if they are struggling emotionally. It’s easy to take others moodiness personally but we don’t always realise how much stress they may be dealing with and how much it’s actually effecting them.
  2.  I’ve learned to accept my limitations and not to push myself until I’m exhausted and therefore going from one fail to another. I’m not a super-human and it’s ok to say “I don’t have the time/energy to be able to this, I’m sorry but it’s not going to happen.” Also to do half of the things well and enjoy them rather than trying to get all of the things done in a rushed and stressed out manner.
  3. I’ve learned that even though I can struggle to find the right words for things and keep my thoughts in order, I can actually be confident, articulate, emotive and put my point across in a very specific way in front of strangers in a court room. All thanks to taking the department of work and pensions to tribunal.
  4. I’ve realised it doesn’t mean you have failed or are shit at something (ok maybe a little) if you need to ask someone to help you with something. There is persevering, practicing and learning and then there’s struggling needlessly as a result of foolish pride!
  5. I’ve started taking care of my health on a daily basis but not worrying about what may happen in the future. I mean no one really knows for sure. I love chaos theory, ha! There is no point spoiling the moment you are in worrying about the moments ahead. If I just chill and go with the flow then not only am I going to be happier and have more laughs, I’m not going to be emotionally exhausted when/if I do need to tackle a problem.

One other weird thing….I felt like I had grown a few inches and lost a little bit of weight. Turns out I’m still the same as I was before!? I have been consciously (my god, I actually spelt that right first time) working on my posture so maybe that’s it.

Any points here that resonate with you?

Chrissie xx

Successful War with the Department for Work and Pensions and Illness Update

I’ll start with some good news first. I won my appeal against the Department for Work and Pensions – yay! I am so utterly relieved!

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DWP Assessment

Previously the DWP had ‘assessed’ me in the most pointless way – it was pointless because they literally awarded me no points, meaning that I was supposedly fit for work. I appealed with endless evidence from my GP and Neurologist who wrote me a letter especially for that purpose. I wrote a thorough list of notes on a copy of their report (which I had to request myself) addressing where they had taken things out of context and at one point completely omitted that I’d failed their memory test! Again the DWP utterly ignored all of this saying their original decision was correct and that I was fit for work.

Tribunal Appeal

I took them to tribunal where I faced two lovely and very understanding people with no government agenda who actually wanted to listen and understand me before judging my abilities. So with the evidence from my GP and Neurologist and the DWP report that I’d enthusiastically corrected in my best angry scrawl (blush) and my verbal testament and  written testament and my answers to their gentle and relevant questions, they concluded that my Neurology didn’t exactly fit in with the DWP’s points system but regardless of that fact, my fatigue, memory and spacial awareness problems rendered it too stressful for me to struggle with holding down a job and it would be at a detriment to my mental health – having previously suffered from severe depression after a never ending cycle of starting jobs, doing my absolute best, failing to cope and then being ‘let go’ from the companies.

Phew and Thank You!

There is absolutely no way I could have done this without the help of my family and friends and there support, advice and constant reminders to follow things up! Anyone who has managed to do this on their own is an absolute hero in my opinion. Online communities like Twitter and the Dyspraxia, MS and Sensory Processing Disorder Facebook pages and their members have been a massive source of empathy and knowledge also.

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So what the hell is up with me exactly?

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I have an autoimmune disease which means my body’s immune system is attacking healthy cells thinking they are invading and so destroying them. Unfortunately my immune system is actually attacking my brain and the myelin sheath that protects my nerves in my spine which is called demyelination. Unfortunately this is a  degenerative condition of which there is no cure for – some heavy shit I know! Fortunately there are drugs and exercises (mental and physical) to manage the symptoms (with varying degrees of success). My symptoms are so similar to MS my Neurologist has not yet ruled it out.

So Practically Speaking….

Basically the signals from my nerves are either very weak, don’t get sent or are slow to be understood by my brain and/or body. For instance my brain could ask my body to lift my foot up when going upstairs and my body’s response is either slightly late or my foot doesn’t lift up quite enough – oops! On the reverse side of that, I could have put a little bit of food in my mouth that is far too hot but because this signal from my body has taken a while to reach my brain I’ve already shovelled another spoonful in my mouth – ouch! I can see how dodgy nerve/brain signals can also effect memory and attention but why I get fatigue though I still don’t understand. I’ve been told ‘It’s just part of it.” It does take me a lot more energy to do things properly and to keep my thoughts straight than the average person but fatigue is a lot different than just feeling tired. It’s like the debilitating exhaustion of being really really hungover.

And The Other Conditions…

Along with that it’s clear I’ve had Dypraxia all of my life and to me personally I find that 80% of the demyelination symptoms are very similar but to a higher, even more unpredictable degree. Both the demyelination and Dyspraxia cause major sensory issues so I can also empathise with people who  have Sensory Processing Disorder. Because all of my different symptoms overlap so much I tend not to bother explaining that I have SPD because that is just a range of symptoms from the other two conditions I assume and not something that is separate (like it is for a lot of people).

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I have no clue if anyone is a) reading this b) remotely interested. It’s here if anyone wants to use it as a resource for future reference or wants to understand the things I’ve mentioned a little better. If you have any questions just ask and I’ll do my best to answer them.

Chrissie xx

My Personal Examples of Sensory Processing Disorder Symptoms

 

I’m going to write this from personal point of view and although maybe not as comprehensive as an objective list of symptoms, I’m hoping it will be more interesting and add a bit more context. Staggeringly, I was only recognised as having difficulty with my sensory processing by a Neurologist around 2 years ago (age 32) and even though I’ve read a lot about people with SPD and chatted online, I’ve not met anyone else with it yet.

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Things I’m Under Sensitive To….

Touch. I love the feel of smooth shiny things like those posh granite work tops and PVC handbags.

Speed and Movement. I could travel in a sports car and zoom around corners at incredibly high speed or do doughnuts and it would just be so much fun. Yay – speed in a horizontal kind of way!

Pain. I can bump into things or fall over and it’s more annoying and frustrating rather than painful. I’ve dropped things onto my foot and crashed into things, had injections and blood taken and the people around me have cringed more than I have. Saying that, paper cuts and mild cramp feel so painful to me!

Pain. ‘Shouldn’t this pan be hotter by now?’…. …. …. ‘Shit it really is, ouch!’

Touch and Pressure. I like big hugs and I cannot lie (sorry for the Sir Mix-a-lot ref), big giant bear hugs that squeeze me. Usually I’ve barley comprehended the lighter hugs before the person steps back, so it’s like I’ve just missed it. Strangely, it also relaxes my muscles and calms me down almost instantly if I’m stressing out. Cows also like this as well apparently – but I’m not going cow hugging just yet.

Taste and Pressure I like my food either savoury and spicy or rich and creamy. I was in my early 20’s until I learned to appreciate subtler flavours and textures. As a kid I always smothered everything in HP sauce!  I also love crunchy food and as a kid I was quite bitey – objects not people!

Touch and Pressure. When people go to the hairdressers and complain that they were getting quite head-sore because the hairdresser wasn’t gentle enough. I have no clue what they are talking about. Again that kind of thing relaxes me so much I feel all floppy and sleepy.

Smell. I often think ‘This perfume smell nice, I’ll just add a bit more of it so I can really smell it.’ Then I wonder why people practically faint when they enter the room. At least I never fell foul of the old “Who ever smelt it dealt it” fart rule.

Touch and Pressure. I absolutely love tight clothes because they are against my skin (unless the weather is incredibly hot) why would I want my body to feel awkward and ‘lost’ inside my clothes?

Auditory. You can be chatting with me and I’ll be interested but then almost subconsciously I’ll tune out your voice and pick up on some other noise instead. The tone of mens voices and traffic noise just blend together a lot of the time for me – sorry guys! I do listen but don’t always understand the word someone just said even though I heard it, especially if they speak quickly and change subjects rapidly or with a sudden short sentence. I’m really bad at remembering what was said as a result.

Touch and Pressure. Don’t give me a wine glass if you are expecting me to get progressively drunk as I’ll put it down too hard and break the stem and most of the glass probably.

Touch and Pressure. When I’m struggling with something – for instance closing a door that’s a little un-aligned – and I loose patience and try really hard that door will accidentally be slammed loudly and with a ridiculous amount of force. “Gaaah!”

Touch and Pressure. I tend to drop things because I’ve forgot how tight I’m meant to be holding the bloody thing according to it’s weight and shape.

Touch and pressure. Y’know those kids in junior/high school that were definitely not bullies but they always went too far with practical jokes or play fighting? That was me – oops!

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Things I’m Over Sensitive To…..

Touch and Texture. I want to punch the manufacturer who started the trend of sewing nylon labels into the back of jumpers etc. Why not just use pokey, scratchy sandpaper instead?

Light. Have you ever watched the film Gremlins where little Gizmo is saying in an adorable little voice “Bright light, bright light!” For me it’s more of an “Argh, I can barley see anything. My eyes have a headache. Are you blind? No light needs to be that bright surely?”

Noise. Things that are high-pitched like unhappy babies screaming and tram and bus brakes, children and/or drunk people with whistles and loud screechy or very ‘busy’ music like acid jazz. Horrendous, like it’s right inside my brain!

Temperature. My Kryptonite is THE COLD or the false sensation of it on certain bits of exposed skin. Even on a mild day, if I have a centimetre gap between my boot and jeans I feel cold, even when I’m in doors! I know it’s not real but tell that to the rest of my brain. Brrr!

Touch. OK this part is kind of nice- in small doses. All of me can be ticklish but in a goose bumpy way – not a ‘stop this strange and unusual punishment!’ kind of way which most people get.

Movement. Rollercoasters or high-spead lift that suddenly drop, or even small trampolines.

Processing and understanding. New situations I have to suddenly adjust to and intuitively pick up on are pretty bewildering to be honest. I mean how the hell am I supposed to just know what I’m meant to be doing? Some signage or instructions are always welcome!

Texture. It took me until I was in my late 20’s before I could eat rough ‘foresty’ foods like steamed broccoli, kale or rocket. I also hated ‘squidgy’ food, primarily cooked mushrooms. I love them now though but had to practice to get used to the texture.

Visual. Spiky things. Luckily for me who’s A/W wardrobe is mainly inspired by punk and rock it’s only increadibly fine spikes that I find freaky. Spikes that are pushing through something make me want to throw up. Yup. Or the sound of creepy crawlies, y’know that popular sound effect they use in sci-fi and horror films far to often? OMG when a TV screen goes half pixelated so you can still see a distorted image of the person, my skin just crawls!

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Where SPD Overlaps With Dyspraxia

Judgment of Speed, Height, Weight, Mass. My judgment on these things tends to be laughably incorrect a lot of the time. Not great for crossing roads quickly but good for accidentally flattering people – or insulting them.

Spacial Awareness. Mine is bobins! This effects knocking things over, tripping over things, forgeting what is behind me in the room, missjugding how close I am to an object. Which way I am facing in the building in relation to where it’s positioned (hospitals and colleges are fun for this.)

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SPD – Who and Why? 

A person can just have SPD without having any other disorders, however it can be difficult to diagnose someone with SPD (especially if they are under and over sensitive to different things) so a lot of the time it gets recognised in people who have other conditions such as Autism, Asperger’s, Dyspraxia, Mosaic (high functioning) Downes Syndrome or nuero-degenerative conditions such as MS.

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Resources

Sensory Processing Disorder Foundation website Helpful but USA based.

Amazingly the NHS website had no info on Sensory Processing Disorder only Auditory.

Wonderful Facebook Group for Adults with SPD UK and US

Here is a very informative site created by a Mum of a child with SPD.

I hope this helps someone to understand someone with SPD a little better or themselves even!

Chrissie xx

Note: Credit to Kelly Dillon & Rachel S. Schnieder for this fantastic poster!

Learning To Recognise & Truly Feel ALL Of My Emotions

I’m typing this tipsy – not because alcohol is my essential coping mechanism or because it’s fun to obliterate a bad memory or feeling but because I simply enjoy getting rather tipsy. Four years ago and for the first time in my life I learned to drink for fun. We all naturally lean toward some kind of copying mechanisms whether it be demolishing a big block of chocolate, shopping for yet more things we don’t need or fishing that packet of fags out of the bin that we said we’d quit. It could even be by being overly bossy and controlling of people or situations.

From age 13 I made it my aim to drink a litre of strong white cider every Friday. That was my day which kept me going through a week of repressing my feelings. That was when I stupidly thought that I could really feel my emotions and let loose. I was doing that but I wasn’t processing them or understand them unfortunately. It was more “Let’s have a laugh and forget about all of the crap – woo whoo!”

Forward a year age 14 and now I’m on to drinking quart bottles of vodka because the cider just isn’t doing it for me anymore. I have to drink it quickly because it has to take effect but then I have to sober up somewhat because I need to get the bus home at at 10.00pm.

I realise now I was always blocking out negative comments from others, negative feelings about myself and generally not allowing myself to feel. Maybe I naturally felt too much as a kid and decided it was sort of scary. Maybe I was made to feel by a relative that someone else was in greater emotional distress so I was to play down any anxieties as if they were of less importance. Maybe I felt I always had to be in control so that I didn’t cause a scene.

Basically the reason doesn’t really matter. It was the fact that by my teens I would do anything before I would actually feel anything. By my early 20’s it was cigarettes for when I was stressed. Sex for when I wasn’t feeling in control (“well I’ll soon change that!”), beer to let my ‘real’ personality out (witty but pretty wild) and dancing while loosing time in alcoholic oblivion so that all I was thinking about was the beat and the base.

What happens when the club shuts, you’re on your own, you’ve run out of booze and fags and you’re starting to feel again? I mean you are sobering up and that uneasy, lost, bewildered feeling is starting to creep back in.

Luckily by my late 20’s I had The Bloke. He ‘left me’ to go to the 24/7 supermarket, he hadn’t dumped me in the way that I misunderstood. Afterward he scrapped me off the floor and basically rescued the sweet, kind, closed off, bitchy block of stone that he’d been going out with for 3 months.

That’s when I learned to actually feel my emotions again.

I say feel – not deal with. Two very different things those.

I was raw and adorably childlike yet frustratingly childish in my neediness.

It was a long difficult road but fast forward 5 years and I like embracing my emotions now. Emotions fill us with joy or sadness. It doesn’t matter – what matters is that we have them and we should embrace them as that’s how we can learn to cope with them – even appreciate them.

Now I’m in my mid 30’s I don’t automatically decline a hug when I’m sad because “I’ll loose it and start crying” because that’s ok. I don’t have this awkward pretend empathy because I don’t know how it feels to go through a particular emotion. I don’t have a silent rage inside of me anymore or a feeling of unjustness that I need to burry.

I feel everything and it’s freaking fantastic – even the really crappy bits.

Guess what? I’ve lost control quite a bit and done some ugly crying (you’re crying for god sake, who cares whether you look pretty) and I’ve had mini emotional meltdowns where it’s all felt too intense. Embracing your emotions really takes some getting used to! However, I’ve not completely fell apart. I’ve not been disowned by everyone (one person yes, but that says more about them than me).

Even if I was left with no one and had to start all over again it would have been the right choice. NEVER EVER FEEL LIKE YOU SHOULD BURRY YOUR FEELINGS DEEP INSIDE. We are humans. We need to feel. This is what separates us from robots. It’s what makes us truly unique. It’s okay to cry and let it out. You don’t need to be ashamed of this either. If you learn to feel then you learn to accept those feelings and you learn to cope with them over time. They are part of you. The joy and the despair – it’s all you. It’s what makes you you.

Love and giant bear hugs.

Chrissie xx

P.S. A few days later – I learned some rather alarming news about my health in a series of letters from my Neurologist to my Dr that I’d requested (for ATOS) and I looked up the three (yes three) conditions online on very specific professional sites . What I found out really worried me but I was busy reading the specifics of each one and the fact that one is very rare and I couldn’t find a reason for the other erm..Then I found that two conditions can at least be slowed down by drugs – phew! Then I was late and had to rush. I didn’t process it properly and spent the next few hours calmly explaining it my loved ones and looking on the bright side. Then A couple of days later I burst out sobbing for around three hours because what the bloody hell this is some seriously scary shit! It was classic – I did exactly what I warned everyone against. I guess it’s hard to see the wood for the trees sometimes. So yeah, I need to head the advice I’ve written above a lot more basically. 

 

Book Club – The FreeMind Experience by Tom Fortes Mayer

About the book

Last week was Mental Health Awareness Week (11th -17th May) and I started reading what could be described as a self help book with a difference. It features the authors personal journey, self hypnosis techniques for relaxation and reprogramming, along with music suggestions to help you to relax or release emotions.

How it works

Tom combines his experiences as a therapist, teachings from ancient wisdom traditions, rapid-behaviour-change techniques and wittily and candidly recounts how his outlook on life changed for the better.

The Three Pillars of Absolute Happiness:

Pillar 1 Peace (emotional intelligence and deprogramming fear) – how to let go of limiting thoughts, beliefs, feelings and behaviours that are holding you back.

Pillar 2 Power (success psychology) – how to unleash your enormous potential and flow through life with brilliance by learning to relate to life in new ways.

Pillar 3 Purpose (unconditional love) – how to enjoy everything that matters most by experiencing more connection, contribution and celebration.

Has it worked for me?

I realised that I’ve basically gone through pillar 1 myself already as life has given me a few wake-up calls and I’ve had long chats with the bloke (usually after too many beers, ironically) about how I’ve felt and why I wasn’t functioning very well. I’m able to relate to my emotions now and to understand them and handle them better as a result.TheFreeMind Experience

Pillar 2 helped me to feel more optimistic and better about myself and kept on reminding me of that. It gave me ways to catch any negative thoughts as soon as they occur and then to reprogram my way of thinking so they re-occur less and less and naturally become positive one’s instead!

I’m half way through pillar 3 at the moment and I already have a greater sense of being at one with life, rather than battling through it or feeling angry when it frustrates me because things aren’t going to (my) plan. I feel lighter somehow and a lot more chilled. I’m also smiling more, being more accepting of others if they act out because they’re having a bad day, I’m more patient and tolerant. I’m also looking at the beauty in the world that’s all around and appreciating it more, rather than just rushing past it on the way to somewhere with my head down. The bloke actually asked me if I’d taken ‘any happy pills or something?’ nope, there’s no need!

To Sum Up…

Don’t expect this to be an uplifting journey all of the way through. You have to start with a lot of soul searching and maybe re-remembering negative times and feelings you may have buried or didn’t realise effected you so much at the time. Feelings that have made you cynical or defensive or unworthy or even phobic etc. but it’s the perfect way to dump any emotional baggage or negative learned behaviour. Then you learn to re-connect with yourself and love yourself in a way that we all should, because how can you begin to positively relate to others or reach any goals if you don’t believe in yourself? Then the book helps us to appreciate everything and everyone – yes, even the crappy times and the arsewipes – because it’s all part of the shared experience we call life and we can’t control everything anyway. But also to really throw ourselves into life with a lighter heart, new enthusiasm and a deeper kindness to others and ourselves. Can’t argue with that! The music suggestions and the idea of attaching positive emotions to them so that when you play that particular song, you feel uplifted all over again is just genius!

I’d love to know would you give this a try? Have you tried something similar?

I was sent this book to review but this in no way effects my opinion. Honest as always!

Other posts of mine about related to positive mental health

You don’t have to hide your disability or condition

Accepting your limitations can be a good thing

10 positive things dyspraxia has given me

Products to help you drift off to sleep rather than tying your thoughts into knots

Why fake isn’t always fabulous

My favourite things about winter (a time that can brutally affect people with SAD)

Scars are your survival marks

Feel happier just by being

10 reasons why bad weather can sometimes be good

Chrissie xx

Accepting Your Limitations Can Be A Good Thing

We’ve all seen those motivational posters, they sprung up in offices during the 80’s featuring wild animals looking magnificent with a motivational tagline below and I-Dont-Push-Deadlines-I-Push-My-Limitsnow they are shoved at us in the form of Instagram and Pinterest pins. Y’know the ones about always pushing ourselves to be better. You should never stopping long enough to even think about giving up, right?

The problem with this kind of mentality is that if we constantly did this without a break and with all of the mental pressure which that entails, we would probably reach a mental or emotional breakdown – faster than a physical breakdown or our actual goals. Everyone has their own personal limits. Whether that’s in the form of patience, strength, confidence or even just being around people without wanting to run away to get some space.

This brings me to why I started writing this. As a fairly young blogger (fairly meaning I’m in my 30’s) and living in a big city with bar openings, boutique launches and blogger meet-up’s happening every week, I sometimes feel a great pressure to be sociable. That’s what people do isn’t it? They meet strangers other bloggers, have a drink and a laugh, Instagram themselves doing this and then do it all over again – the next night possibly. It’s not always for me I’m afraid. In fact I passed up going to a popular blog conference the night before it happened. I actually felt guilty that I’d passed up the opportunity to work with brands and meet bloggers I’ve ‘chatted’ to loads on FB and their blogs and keep-calm-its-ok-to-say-say-nomine. What was wrong with me? Anxiety at meeting new people? Well partly, I think most people are a little nervous if they’re honest but it wasn’t specifically that. I was getting a lift down and back so travelling wasn’t the problem. Depression? No I’ve that and this wasn’t it. Was I just giving up and not pushing myself. Was I taking the easy way out? Hang on! This is meant to be enjoyable and exciting not an awful endurance test! Then I realised the truth. I just really didn’t want to go. That’s it. I feel guilty it took me this long to be honest with myself as someone could have had my place but I felt really relieved also.

I can sometimes feel fatigued easily, physically, mentally and emotionally. It seems to require quite a bit of thought and concentration for me to do things without messing them up or just going blank and staring into space, like my brain has gone onto stand by. ‘Brain fog’ they call it. This usually involves my mouth hanging open slightly and a glazed look on my face – so glamorous! The conference would be eight hours long, starting at 9.00am. I’d already felt ‘off’ for two days. I was more lethargic than normal and rather apathetic to things that I tired-cat-e1296037478713normally love doing. I was also having an emotional wobble for various reasons I won’t go into. All of these things tend to get rapidly worse when I ignore them and try to plough on regardless. I can be on the brink of tears one minute and snapping at people the next for no discernible reason. Kinda like when a kid gets ‘over-tired’ ha!  How many times have you pushed yourself to do something you feel that you ‘should’ do even though you know, deep down you need a rest or that, if you’re being honest it’s just not quite you? How many situations have you got yourself into because you thought you were ‘supposed to’ and then realised you had those nagging feelings of doubt for a good reason? Why do we put this pressure on ourselves? Is it because we think we have to have lives brimming with masses of fun experiences and if we slow down, we are a few steps closer to the Grim Reaper? Maybe it is just plain old FOMO and that feeling of regret when seeing peoples cray cray selfies the next day on social media. Personally, I think it’s the constant pressure which modern society puts on us to push ourselves and to achieve more because now we have many more opportunities than the previous generation had. It’s our duty to achieve (and to attend) it all! So here’s the sort of ‘motivational’ quotes which I’ll be paying attention to in the future.

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Chrissie xx

December Monthly Round Up

My family and friends have opted out of appearing on my blog, so that they won’t be affected by the subsequent fame that would of course ensue, so there are no pictures of christmas gatherings to entertain you with. I’m sure you are just, oh, so saddened to here this :0)

This month I’ve been…

Watching…

Scrubs and falling for Dr Cox all over again.

Myself and The Bloke watched a wonderful film called The Machine about a man who’s daughter is physically ill. He intends on building an artificially intelligent android and uploading his daughter into her. The AI develops advanced emotions and a subconscious. The mans government boss has other ideas and wants to use her as a weapon along with the war veterans he’s modified. Luckily the modified Vets also have other ideas. This film is really quite beautiful with subtle heartfelt dialogue and room for the characters to develop. There are the obvious parallels to be made with Blade Runner in it’s themes, characters and score but this is a much smaller independent film and I thought it was better for it.

Wearing…

My Fraggle Rock tee that I treated myself to for xmas. I also bought a white faded Count Duckula tee (I’m all for being retro) only to find it’s not faded or retro looking at all which makes it look rather childish. I’m going to die it light grey like the other one and hope it subdues the colourful print – eek! I’ve also got reviews of some gorgeous jewellery coming up in January so keep a look out for those.

Feeling…
Absolutely chuffed to bits with my new laptop! It has a very similar operating system to The Blokes computer so I’ve customised it and figured it out pretty quickly. Gutted that I got the wrong game for The Bloke for christmas! I swear I picked up Grand Theft Auto and asked the assistant if it was a follow on pack or a full game just to check, then I took it to the till and paid for it. I opened the bag a day before christmas to wrap it and realise I’d actually bought Far Cry – WTF!!! It’s going to be fun taking that back now the 28 day return time has past. I’m trying to get help from an occupational therapist by going through my local councils services instead, as I’m not keen on the Neurologists almost blasé suggestion of taking a sample of my spinal fluid like it’s no big deal. I’ve been waiting for around two years now to just get some suggestions and excersises from an occupational therapist to make my memory and coordination problems (that I’ve had all of my life and that haven’t deteriorated) easier to cope with – that’s really was all I was asking for in the first place.

Eating…

Boxing day dinner with roast and mashed potatoes cooked perfectly by The Bloke. A giant Thorntons reindeer in milk chocolate that should last me around 2 months of cheat days! I’ve taught myself how to cook (yes, using paste from a jar counts) a fantastic Massaman stir fry. It tastes so creamy thanks to full fat coconut milk and crushed cashews and is dairy free.

Using these beauty products…

My Proactiv+ starter kit worked really well and cleared up my skin completely but it was a bit of a shock to receive an email from them detailing three large payments I would be making that month to them for full sized products because I’d supposedly signed up to an ongoing and very expensive plan with them. I don’t think so!

Soak Yourself patchouli and vetiver soap, combined with Good Things daily exfoliator and a light moisturiser – maybe from Lush? – should do just as well.

Discovering…

That you have to read the small print carefully and make sense of cleverly worded jargon and beware of any type of plan. I’ve learned how to write good blogger pitch emails which means I’m able to collaborate with some wonderful brands and designers. I’ve also discovered that Jack Daniels, Dr Pepper and fresh lime juice tastes wonderful.

I hope you had a guddon’ and even if you didn’t, I’m wishing you a really wonderful new year full of surprises of the most awesome kind.

Chrissie xx

But Which Developmental Disorder Do I Have?

At last! Hurray! I’ve been wondering why it’s been harder for me to do simple everyday tasks, when other people just seem to be able to get on with it, without thinking, all of my life. Now I know!

Ok, so that came a bit out of left field didn’t it – although if you follow me on Twitter maybe not – so where to start…

Two years ago I read an interview with Florence Welch (of Florence and the Machine) in which she explained that she had Dyspraxia, a developmental disorder. She explained the symptoms and it was like she was describing what it’s like to be me, better than I’ve ever been able to. It was a revelation – some kind of resolution. Sorry, couldn’t resist.

After researching Dyspraxia online for a while I managed to find a comprehensive list of Dyspraxia symptoms in adults or what I prefer to call quirks, as they really do shape your character and not always in a negative way as people naturally assume. I also read that ADD (Attention Deficit Disorder) can often go hand in hand with it. After reading through the symptoms of both disorders I was in tears. Not because I was upset but because finally, after 32 years, I completed understood myself. I released that I’d never hbeen stupid, or lazy, or careless, or ‘off with the fairies’ I simply had an impairment. I was driven, a lateral thinker, creative and I’d been coping with something that should have been diagnosed in childhood by my Pediatrician.

How the quirks of a developmental disorder (which I’ve been officially confirmed as having) effect me personally:
I’ll put ways of coping into

Gross motor co-ordination skills

As a kid I never figured out the whole crawling thing. I’d reach out to be picked up. I got bored and as soon as my legs where strong enough I’d stand up, cling onto the sofa and lock my knees. When we went out my parents put rains on me as a toddler so that when I frequently tripped up, frequently, I’d just dangle from them and not hurt myself.

Throwing as a kid involved the ball going straight up in the air, sometimes landing back down on my head or even behind me! The other day I tried to throw a ball back over a fence to someone but it hit a tree branch above me and landed neatly in between my feet. Catching involves me reacting way to slowly and grabbing at the air as the object hits me in the face. I’m actually laughing out loud as I type this.

Ridding a bike without stabilizers seemed really scary until, one day at the age of seven, I was too embarrassed to use them any more and asked my friend if she’d let me borrow her bike and if she’d shove me down a small hill. It worked!

I trip over thin air.

If I’m walking slowly I can’t walk in a straight line, unless I pick up speed and momentum then it’s almost like a fun game trying to steer my body around obstacles successfully.

I have very little spacial awareness. I can’t tell you the amount of times I have genuinely walked into a door… A shelf…A fence…A tree.

[I naturally tidy up and remove any obstacles in my living or working space as I go along, which really helps.]

Fine motor co-ordination skills

I hold my pen like my life depends on it when writing. If I try to loosen my grip I drop the pen.

My left hand is good for dextrous tasks and my right is good for more forceful tasks. I write left handed, use my phone write handed, play squash with both which ever will get the best shot. I’m not ambidextrous though, that would be using both hands equally for every task. I prefer squash to tennis as the ball bouncing off the wall gives me those few more seconds I need to judge where the ball is going.

I randomly drop things. My brain forgets it’s still holding something if I’m per-occupied.

[When I’m holding something delicate I don’t chat or let my mind drift. I concentrate solely on that object.]

I didn’t have to cope with tying shoe laces until I was about eight. Thank god for velcro. By then I’d already picked it up from watching others.

I like strong tea and wring out tea bags by squishing them between two teaspoons. Sometimes I accidentally flirt it right across the kitchen. This makes me laugh – every time.

All of this spilling means I’m often sticky. Wet wipes are my friends.

It’s impossible to apply mascara without getting all over my eyelids.

Speech and language

If I’m very tired, or have low blood sugar or I’m just really chilled out and relaxed my speech gets a little slurry. I’m sure people who have only met me during these times must assume I’m constantly drunk!

I have trouble with sequencing and when I’m enthusiastically make a point I’ll be incredibly articulate but get stuck in a loop with my point or loose my place. Sometimes I’ll start my sentence with a prefix and then put it into context at the end. Yoda like I sometimes speak. I write like that when blogging, then have to edit it ;0)

Every now and then I CAN END UP TALKING LOUDLY WHEN I’M FEELING A BIT HYPER OR REALLY HAPPY! or almost in a whisper for no apparent reason.

When I’m a little tired or distracted words I want to use are always just on the tip of my tongue such as grapefruit, wardrobe or duvet. As are peoples names, even my friends. I actually get really articulate when I’m angry. What’s with that? Haha!

Perception

I find it hard to track things moving really quickly so if someone tosses me a set of keys say, my initial reaction is to duck and cover.

I’m rubbish at gauging the speed and distance of cars. If I was in a hurry to cross the road, I’d almost walk into the back of the car before it had fully passed. Sure way to get your foot run over, which I did. Now I’m overly cautious, really overly cautious. When drivers pause for me or flash their lights for me to cross or don’t indicate or drive right out of side roads at speed it really throws me off.

I dislike loose clothing and feel ‘a bit lost’ inside it. Unless it’s really warm I like tighter fitting clothing on my back and upper arms. Hey, everyone likes being hugged, why not by your clothes? I hate high neck lines and jewellery that’s close around my neck as it makes me feel a little claustrophobic. Hey, not many people like being strangled right?

I can hear a high-pitched noise from really far away but have to ask the person next to me to repeat themselves as there is too much background noise ‘crowding’ my senses. This one really confuses my bloke.

I can be fairly light sensitive and would constantly wear shades if I lived in a country that wasn’t overcast for 75% of the year.

My sense of smell is pretty bad unless I take a moment to close my eyes and block out any distractions.

I find it hard to judge, the weight and amount and taste of ingredients especially in relation to other ingredients, so cooking is always an experiment. The amount of times someone has had to wrestle a bottle of salt or oil from my hands. Which leads me to pouring and not massively over pouring purely by mistake.

I used to have an appalling sense of direction until I became a temp age 21 and got used to following my trusty A-Z.

I didn’t learn my left from my right until I went to high-school – even now sometimes I have to pause for a moment.

I often have in mind what date and time I’m meant to be doing something important but not see the significance of it in relation to today’s date, then suddenly randomly realise ‘OMG that’s tomorrow!’ [writing everything down on a paper wall calendar and crossing off each day is invaluable.]

Learning, thought and memory

I virtually have no short term memory. I can glance three or four times at the date or time in the space of a minute because I’m distracted and it’s not sunk in. I can forget what day it is and suddenly remember a couple of times during the day. I can put something down and immediately forget that it’s there. I can start a sentence and forget what I said at the start a sentence and forget what I said at…

[Keeping everything tidy by giving each thing a permanent place to live and then returning it there straight after using it, makes finding things so much eaiser. I even got a special mention by my boss once for being so efficient and having the most organised work space!]

Poor sequencing causing problems with maths and spelling. My maths improved slightly when I moved out of home and had to do my budgeting on the go in the supermarket. [I’d by my usual items so that I had a fair idea of the price anyway. My spelling has improved immensely because I blog frequently.]

[It has a lot to do with practicing how to access the relevant knowledge and trying not to loose your place while processing it, rather than simply learning correct spellings and timestables. Although, basic learning does require your short term memories to sink into your longer term memory, which I seem to struggle with.]

[People just don’t understand: It’s not always about taking more time to learn a skill, it concerns whether I have the capacity to implement that skill effectively when I have learned it? With certain things I have to admit that I simply don’t have that capacity.]

Understanding commands and following instructions. Two at a time please, any more and not only will I not remember the others, I’ll also get flustered about the first two as well.

Teaching by telling, showing, doing. I’ve written them down in the most effective order. I once came home from brownies with the resolute idea that I had to ‘decide which badge I wanted and make it by next week.’ In reality the brownie leader had simply mentioned that next week we would be working toward earning our brownie badge of choice. As a kid and a teen it was like my brain absorbed instructions/information and then flipped them around, shook them about like a snowglobe, added some sprinkles and spit them out, only vaguely resembling what they once were.

I either struggle really badly with concentration that it’s almost mentally painful for me or I’ll get so completely absorbed in a task I’m enjoying that I’ll loose all track of time. [Thank goodness for To Do lists and scheduled reminders] I remember in junior school I could easily think up an entire story in my head with an opening, journey, character development, plot twist and epic conclusion. Then the teacher would say “Five minutes writing time left everyone.” Yet I’d only managed to write the first sentence. I’d get so lost in my own thoughts, you see. I suggested once “Look, why don’t I just tell you the story, it’s awesome, you’ll love it!” which didn’t go down too well, I remember. [I’m so much better now because I’m aware of it and I’m strict with myself and plan my time.]

Often when I write/type things quickly either miss words or repeat the same word twice twice. If I’m overloaded or nervous I easily up jumble the sentence in my words ;0)

Emotion and behavior

You know when you’re a kid or a teen and you’re hanging out with your mates and discussing what possible trouble you could get up to next, well that used to be fun but slightly stressful for me. “Right, we have decided – finally – that we are doing this.” Then I’d pipe up “But I don’t want to do that.” “Christine! We have spent half an hour trying to figure out what to do and you’ve hardly said anything. Now, you speak up!? Where have you been!?” The truth was I had spent the time trying to get a word in and then miss-timing it so when I did manage to get my point out it was irrelevant or seemed almost random. That intermingled with wondering things like if penguins had the choice, would they choose to wear jumpers?

As far as my teenage judgement skills went, I’d often hear people say “You always have to take it that step too far don’t you.” Oops!

I’m not great at entering new situations, unless they are heavily sign posted, and being able to just know what the hell I’m meant to be doing. If there’s some – anyway – I can end up making an arse of myself, I’ll manage it. I’ve learned just roll my eyes and shake my head a little and accept it with grace and humor. As a teen, not so much. [These days I do pause upon entering a new situation, just to take stock of it and compose myself, which really helps.]

I’m a little like this in social situations as you will probably know having met me or read previous posts on here. I’m very blunt which some people find refreshing, others bitchy and some find it plain hilarious. You know the US saying “That sounded better in my head”? Honestly it did! Haha!

I’ve always been a little impulsive with my decisions my moods and my likes and diss-likes. They are ever changing in little ways that most people wouldn’t notice unless I bother to vocalise them. So quite often I don’t bother until I’m sure I’m sure. Or I’ve changed my mind at the last minute. I never do this with friends who I’ve made plans with though, ever.

As I’m writing this I’m working through the list of symptoms for dyspraxia and developmental disorders as a guide to jog my memory. At the bottom it says ‘tendency to get easily frustrated’. Well hit me with a shitty stick. Obviously battling with my concentration etc. ALL OF THE TIME to do certain (supposedly) simple tasks, does make me a tad ‘frustrated’? I don’t throw things across the room anymore though. I do slam down what I’m holding every now and then while going “Aaaaaagh! for f**K sake!” Mostly, I just take a deep breath, roll and drop my shoulders back then put on my determined face and try again.

[All of these traits can be managed to a certain extent by me having some calm down time to process everything and to relax so I don’t get overwhelmed. Best example: After working for three days I often won’t be able to sleep until around 4:00am because my mind is still buzzing even though I’m exhausted. Imagine having to concentrate extra hard with everything you do, which uses up all of your mental & emotional energy. But with a lot of sleep and a calm day in between I’m recharged and good to go again!]

I hope this long list of my very specific weirdness has been of some help to people or at least of interest, please let me know. Everyone with developmental disorders, even one’s similar to what ever the heck mine is, will experience things a little differently from each other. Have some quirks but not others or with varying degrees.

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Slipping through the net

My parents did bring this up with my pediatrician throughout the 80’s and 90’s: My total lack of spacial awareness and lack of co-ordination and concentration. My difficulties with absorbing information and maths and English. His response was “Children develop at different rates. She’s fine.” Although, this is true in a wider sense, I and therefore my parents were really struggling. My teachers just kept on asking my parents what was going on, like they were qualified to know! However, the Dr did send me to a speech therapist, who had a strong posh London accent! My very Northern parents nearly had a fit when we were walking down the road and I pointed out “a big larry” rumbling passed. *repeated face palm*

To be fair ‘Dyspraxia’ was only recognized in the early 90’s but ‘developmental disorders’ (and various other terms for them) definitely had. At the very least the school should have picked up on symptoms similar to well known disorders such as dyslexia and/or Attention Deficit Disorder. Right, moan over.

Thankfully after asking parents of children and people in their twenties with certain conditions, it would appear that schools and colleges nowadays are more alert at noticing students difficulties and getting them support.

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What now?

A year ago I spoke to a GP who failed to tell me he was a locum and went off my misinformed guess of who I might possibly need referring to. After a six month wait I got to see a Neurologist who after a full work up and extensive questioning about my history, confirmed that yes, I definitely did have a developmental disorder which seemed similar to Dyspraxia and/or ADD. He couldn’t confirm the specifics for sure but he could confirm without a doubt that I had been miss-referred by the GP. Another six months, another Neurologist saying exactly the same thing. It’s now a total of fifteen months later and I’m still waiting to be referred to ‘the right person’. It doesn’t help that the two Neurologists share the same secretary who hasn’t managed to get a single thing right when arranging communications or appointments. Total fail, is an understatement.

After spending ages in forums I’ve learned the people who usually diagnose and offer help if needed are Psychiatrists, Psychologists and Occupational Therapists but I’m reluctant to make another suggestion in case, some one runs with it and it’s wrong again. Luckily I’ve found a GP who is fantastic! She’s charting my progress with great enthusiasm and interest. She put my mind at rest and told me that she would write a letter to the benefits agency so they can’t be totally dismissive now I’m back on regular signing.

While I was at the job centre I heard an employee referring to me when I walked by “Why does she need to see ***** (the person who deals with people who need more support). There’s nothing wrong with her!” Maybe to assuage their annoyance I should have limped in a circle while making random howling noises.

If anyone knows for an absolute fact which person is qualified to diagnose specific developmental disorders in adults, please let me know. It’s important because a) I’d like to know what’s going on once and for all so I can get some support b) I need to let the benefits agency know all of the specifics.