More ‘Funny’ but Very Earnest Things I Said and Did as an A-typical Kid

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I remember the Dr’s making a fuss that I wasn’t crawling yet and thinking I was ‘backward’ – a supposedly acceptable medical term in the 80’s. My Mum called my name and I noticed the new Dr and shouted “Hiya!” as I determinedly pulled myself up onto my feet and stood up.

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Another time the Paediatrician asked me “Can you draw me a picture” with a little frown I replied incredulously “Yes!?” My Mum had to explain to the Dr that he needed to ask “WILL you draw me a picture?”

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I got sent to speech therapy as a kid as I wasn’t saying (repeating parrot fashion) the ’normal’ amount of words for my age. The therapist who had a thick London accent said “Lorry” and pointed to a truck. Little Northern me said “No silly, it’s l-u-r-r-y! Mam, the lady needs school!”

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Apparently on my first day of nursery, it didn’t occur to me to play with another kid at the table-height sand pit. I just queued up behind them and patiently waited my turn!

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Also at my first day of nursery school when the teacher announced it was story time I headed straight for the beanbag, curled up and closed my eyes. It wasn’t until I heard everyone laughing that I realised they were all sat on a square of carpet cross-legged. Feeling totally embarrassed I guess I decided to style-it-out and just dragged the beanbag over onto the carpet and curled up on it again.

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In junior school the dinner lady brought out the big skipping rope but got distracted talking to another kid. Knowing that when you mess up – which I usually did after only three jumps – you have to join the back of the queue all over again, I saw my chance. I got my mates to hold the rope and began awkwardly skipping. When she noticed, the dinner lady freaked and told me to form a queue. I stopped and asked “So you’ve stopped me taking my turn skipping, to form a queue, to be the first one in the queue, so I can start skipping again?!” She waited until a big queue had formed and then sent me to the back of it – the cow!

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As a kid my Dad tried to engage me in math homework by asking “If you had nine oranges and you gave three to Mum and three to Nanna, how many would I get?” I replied “Two.” “No love, I’d get three.” With a rather perturbed expression I replied “Er, I’m really sorry Dad but you’d only get two otherwise I wouldn’t get ANY and you said they were my oranges!”

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Do you have any examples of you or your kids wonderful logic? I’d love to hear them!

Chrissie

Signs of Dyspraxia/Aspergers in Females and My Own Quirky Examples

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I’m approaching this post from my point of view of being female with Dyspraxia and Asperger’s – a high functioning (sometimes) version of Autism. It’s really difficult to tell where Dyspraxia ends and Aspergers begins as symptoms overlap regularly and quite often people have both. Here are some behaviours which are related to Dyspraxia and/or Aspergers that are only obvious in children/teens/young adults if you know what to look for. Clearly no one in my life new about these and were just totally perplexed as to why I was so different, including myself. Hopefully this post will make things easier for parents who are confused or anyone who can relate personally.

Skipping the crawling stage

Lots of babies with Dyspraxia/Autism/Developmental Disorders go straight from sitting and reaching out to walking. It’s like we just don’t have that crawling instinct in us so we just copy what we see: Lots of people walking around! I used to pull myself up and wobble my way around the room going from couch to couch at a really early age. My parents and Paediatrician thought this was astonishing progress but it’s actually more of a red flag of a hidden condition.

Sensory issues (SPD) with food, clothing, noise, light, touch or movement 

This can just be Sensory Processing Disorder in-and-of it’s self but I find it’s often related to Dyspraxia and/or Aspergers. Sometimes it’s the texture of the food that the child might struggle with or too many flavours in their mouth at once. I used to eat everything on separate fork-fulls as it never occurred to me to mix them but I didn’t mind if different foods touched on my plate.

I was highly sensitive to the texture of fabric (and still am). Anything vaguely rough i.e. not soft, used to make me itch and squirm like crazy! Also sitting on cheapo carpet for story time, I’d have to sit on my coat. I also need weight on me to feel snuggly and calm. So even in the middle of Summer I can’t sleep without a duvet on me. I remember my Mum telling me every time I’d be upset I’d wrap myself in this really soft and (more importantly I realise now) rather heavy blanket, and I’d instantly calm down. That way I could ‘feel the outside of my body better.’ Google ‘proprioception’ for more on that.

As a kid high pitched noises or unexpected alarms were totally debilitating for me. Even slightly high pitched sounds cause me physical pain so I have to wear noise cancelling ear plugs to concerts.

My eyes have always be light sensitive so these days I have transitions lenses in my glasses and a great pair of sunglasses that are polarised and anti-glare.

I’m mostly under sensitive to touch and movement, meaning as a kid I loved my hair platted, brushed and cut but I know some kids find this painful and stressful even when it’s done gently. This also worked both ways so my version of tag usually involved clumsily and accidentally rugby tackling people to the floor – oops!

I loved swinging, bouncing, jumping, rocking motions, anything with speed and movement. I found it really exciting and calming in equal measure. I’ve gotten more sensitive to movement as I’ve gotten older though.

Questioning and Analytical Personality

From a young age, maybe seven or eight, I started wondering about EVERYTHING. What is the meaning of life? Why can’t we feel the earth spinning and why don’t we get dizzy? If we evolved from Apes will we evolve into something better than human or is this as good as it gets? If fate existed then who would decide it? Why do different people around the world all think that their god is the real one? Are there aliens out there and would they think that we were the aliens if they saw us? I’d contemplate these things with my best friend for at least half of playtime each day and then we’d go home and ask our parents these baffling and sometimes amusing questions.

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Issues with Co-ordination, Balance and Spacial Awareness

Our bodies internal compas and steering tends to be badly calibrated, making it hard for us to do things like throw and catch a ball, ride a bike and swim. I only learned to ride a bike when I was 7 and my mate lent me hers (mine still had stabilisers on) and pushed me down a gentle grassy hill. For once, momentum worked in my favour. When I’d try to throw a ball my hand would open to late and I chuck it at the ground in front of me. Same for catching, I’d react too late because my brain couldn’t process the fast movement and it would just hit me.

I tend to use the word ‘proprioception’ instead of ‘spacial awareness’ as your body’s proprioception helps you judge the objects around you, your own limbs and how much space both things occupy and the space between them. A person who cannot automatically judge this will end up bouncing off things, walking into things, falling over things, tripping up over their own feet or throwing drinks at their face when drinking from an over-sized (and therefor unfamiliar) cup etc. I get bruised daily from having poor proprioception. I also do not possess the natural reflex to put my hands up when I fall or if someone suddenly throws something at me, so I’ve amassed a rather wonderful collection of scars.

Difficulty with Spontaneous and Unstructured Play

At the age of around three Mum dropped me off at a play group to learn social skills and how to exist separately from her. The assistant suggested I might like to go on the slide after me pointing at it while jumping up and down enthusiastically the moment we got there. When my Mum came to pick me up it turned out that’s ALL I had done. For an hour. My Mum was a little annoyed that the assistants hadn’t suggested to me that I do something else because she knew that it wouldn’t naturally occur to me, even though I was surrounded with other things to play with. I hadn’t talked to any other kids either, again because it hadn’t naturally occurred to me that this is what I was meant to be doing, simply because no one had explained this was an option.

No Idea of Boundaries or What is Unsafe

Oddly enough, considering my lack of communication with little kids my own age, I would enthusiastically say a loud “Hiya!” to any adult within 12ft. As I was getting older I started acting fearlessly when it came to jumping off stuff that was too high or climbing giant trees or standing up on swings and wondering if it might be fun to let go of the chains (it really wasn’t). Oddly enough, I was stupidly scared of going on fairground rides with the theory that if I couldn’t cope with it, I’d essentially be stuck on the bloody thing until it finished. Having tested this logic a couple of times as an adult – with literally sickening consequences – I now stick rigidly to it!

At the age of 10 I got chatting to one of the keepers at the zoo we were visiting who was around 18 I reckon. When I say chatting, it was more strolling and chatting to the point where my parents where tagging along behind. My ability to make this guy laugh and to ask questions that he actually found interesting, both pleased and worried them equally and I think they were very glad that he was a zoo keeper and not some random man! I think this behaviour also ties in with being able to communicate/feeling more comfortable with people who are much younger or older than ones self.

Not Getting the Natural Rhythm and Impulse Control in Conversations.

I would butt in constantly because a) I would mistake someone taking a breath or pausing to think, as them finishing their sentence. b) It would take me so long to process what someone was saying and think of a response, that they would have moved onto another topic. I’d suddenly blurt out (but actually I’d been waiting for a gap in conversation and missed many of them) what my thought on their previous topic was and they’d look at me like I was nuts. c) I’d be constantly saying “Oh I did that as well.” or “Well, when I did that…” not because I was self absorbed but because I was delighted to have something in common with some one (proving I was normal) and I really empathised with them. Not the best idea though when someone is trying to tell you something important that’s bothering them or what they did well etc.

Sometimes I blurt out something which is meant as a compliment and certainly sounded like it in my head but seems to get lost in translation between my brain and my gob. As a teen I enthusiastically said to a lad I fancied “Your hair gel makes you look like Sonic The Hedgehog!” I thought Sonic was The.Best.Thing.Ever at the time but everyone laughed and the poor kid just looked mortified. Oops!

Something that amuses me is when I’m deep in thought with an imaginary scenario going through my head I might end up saying a bit of it aloud or doing the corresponding facial expressions. I swear my imagination has a life of it’s own and not just in my really vivid hyper-real dreams. Something that drives my bloke mad is when I don’t answer him because I’ve thought the answer in my head so strongly that I’m sure I have said it aloud already.

I tend to take people with dry humour very literally, even though I’m quite dry humoured myself. With expressions that I might not have heard before, it never occurs to me that it’s a tern of phrase and I take those literally as well.

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Memory and Concentration and ‘learning difficulties’

I’ve put ‘learning difficulties’ in quotes because I think a lot of people with Dyspraxia and/or Aspergers are usually fairly bright but struggle to learn things because of short term-memory, recall, sequencing and concentration probs. As a kid in class I would have this whole amazing adventure in my head and I mean an epically long adventure. What completely escaped me was the fact I only had just under an hour to get it down on paper so a) It should be a manageable length and b) I should start writing as I went along, not think it all up first and then start writing five minutes before the end of the lesson. When these two things were explained to me I attempted some vague time management but again and again I disappeared into my own thoughts where it was like time stood still.

My recall is useless, it’s like I know I know something but I can’t figure out where my brain has stored that piece of knowledge. In Junior school my hand would fly up and I’d look chuffed that I knew the answer but when the teacher picked me I’d just sit silently with a very confused look on my face as the answer slid away the more I tried to think of it. I confidently told the teacher once “Give me a minute, It’ll come back to me.” and everyone laughed, apart from the teacher who frowned and told me “Question and answer time doesn’t work like that as you well know!” I didn’t know or should I say I hadn’t remembered how structured it was. After that, I didn’t put my hand up again until I was well into high-school many years later.

When you notice absolutely everything it’s hard to filter out what’s not relevant to be able to concentrate. The sound of the clock ticking, the smell of someone’s deodorant (or lack of it), what the weather is doing outside, how tight the neck of your top is, what you’d like for dinner, that joke about the llama you heard last night, why is there a stupid silent ‘gh’ in words like ‘night’. Ah, right, what was I doing again? Why is this in my hand? Ooh, I can use it as a clue!

Sequencing (thinking straight) and Logic

My thought processes seem to go from A-B-D-A-E-D and then No! Now it’s ALL slipped away! Those logic questions like ‘If Suzanne had 12 apples and she shared 3 with Bobby and…” Bloody Suzanne and her frickin apples! Why’d she have to share them unevenly anyway! Even as a teenager I would physically have to arrange my pens and pencils into groups as if they were the apples (using them as counters essentially) to be able to answer these questions. My logic does not work in a straight line. I’d think myself into a loop with the same two bits of the equation going round and round yet I’d manage to miss out the third part entirely and I’d go straight to the last bit, then be utterly confounded as to why my answer was wrong.

In high school I started making notes for maths. Notes which looked nonsensical to anyone else. I was utterly delighted when the teacher said we had to show our ‘working out’ to show her our logic. I made my copious notes in a circle all around the sum and crossed out each one as I used it and proudly handed it in. Her face was an absolute picture! It turned out I had to show my working out in a way that everyone else worked things out or even that part was considered wrong as well. I learned how to write my notes to keep track of all foggy, sum related thoughts on a separate piece of paper, then I’d neatly write down my fake ‘working out’ in the style that they wanted to see in my text book. This meant I took three times as long to do every sum/problem and never finished the page, making the teacher think I didn’t understand the questions in the first place. *face palm*

Not the case at all. I found a lot of questions in high school – not Science or Maths related – to be mind numbingly boring. Not the actual subjects just the textbook questions so I liked to ask my own, which drove teachers crazy, partly because they didn’t always have the answer and partly because they had a lesson plan to follow. I’d also just go onto the next page of questions which I didn’t realise were supposed to be for the next lesson. Seriously though, four painfully simple questions (where the obvious answers were in the first four paragraphs of the text) were supposed to keep us busy for an entire hour. Oh my gosh the boredom!

A lot of the time I loose the point of my sentence and then just try to wing it but end up coming to an increasingly quieter waffle that just trails off. It helps to quickly loosely plan the structure of my sentence before I open my mouth when I’m around new people. Sometimes when I’m listening to someone, by the time they’ve come to the end of their sentence, I’ve already forgotten what they said at the beginning. Sometimes when I’m telling someone something I don’t start at the beginning of the sentence so there’s no context to what I’m saying. I tend to recognise that specific confused look on people’s faces these days and quickly (almost as if it’s part of the original sentence) add on what should have been said at the beginning. This makes me backwards like Yoda talk.

Sequencing issues also apply to the order of letters in a word and the order of the words in a sentence, which is why it’s taking me forever to write this post! If I left this utterly unedited, some words would be unrecognisable and some words would be left out and some words would be repeated twice etc. As well as everything mentioned in the paragraph above. It would read as jumbled up as I think basically.

Just not getting stuff

It used to be really difficult for me to weigh up new situations. I don’t naturally have the ability to asses what I’m supposed to be doing or how I’m meant to be doing it straight away. I can’t tell you how many times I’ve just blundered straight into a situation and someone has said “Excuse me! Can I see your ticket?” and I’ve looked at them blankly, having walked right passed a very obvious illuminated ticket office. I remember being totally sensory-overloaded one summer after being stuck in a huge, noisy, meltingly hot cue at the post office, only to find out it was the wrong cue! I was told I’d have to cue up all over again in the right one. I tried to reason with the lady that it wasn’t fair but ended up bursting into tears. It was a really good lesson though as it taught me to just pause for a moment and assess situations first before throwing myself into them. I’m actually really quick at assessing stuff these days because of that.

After saying all of this I need to state that Dyspraxia/Asperger’s does not effect intelligence unless there are other developmental problems.

Honesty, Naivety, Tactlessness and Manipulation

My honesty meant that I was blunt to the point of being tactless. Often if someone was avoiding saying a certain thing or they’d messed up in some way and were trying to wriggle out of it I’d assume that I mustn’t have understood the situation properly (pretty average occurance for me tbh) and so I’d say “Yes, you did! You told her that blah blah…” or “I thought you knew you were supposed to do blah blah because I was there when they told you to.” That made me really popular in the first years of high school!

My natural in-built honesty meant that up until I was around 11-12 it never occurred to me that people lie. They lie to make themselves look good, feel better, to get ahead, to stir things up or simply to see if you are daft enough (or naive enough) to believe them. I was. Even aged 12-13 I believed that if someone was your friend then they wouldn’t play a joke on you or manipulate you because that’s a mean thing to do and friends are never mean. Wrong! It would take someone else to notice what was going on and point it out (practically bang me over the head with it) before I’d realise. Luckily this stopped when I got friends who were more mature and kind and realised that I had ‘difficulties’ in certain areas that they shouldn’t take advantage of.

Oddly enough I became a really quick study in reading people as I got into my mid-late teens in order to fit in and appear ‘normal’. I think this is why Dyspraxia/Aspergers is so overlooked in females as we can be great chameleons at blending in enough to pass for being Neurotypical. I’d never just go along with stuff to be popular but I was good at staying quiet and observing peoples tone of voice, or little gestures or how they would back track and subtly change their meaning if what they were saying wasn’t going down well with others. I started to notice people’s pride and the need to be popular and the fact that they were more prone to agreeing to do something if they thought it was their idea in the first place. I also learned that people like people who listen and give just enough advice that’s helpful but doesn’t entirely go against what they ultimately have already decided to do anyway.

I was becoming, without realising it, a little manipulative. All those years of studying human nature to be able to understand it was meaning I was now able to predict it and use it. I’d say 80% of the time it was just to talk my way out of forgetting something yet again or to hide something quirky thing about myself or to pretend I’d listened to or understood what was being said but the other 20% was to get my own way. I found it easier than people respecting me enough to take my opinion seriously, especially when I was struggling to explain it properly. Plus, when I couldn’t mentally keep up with group conversations to be able to give my input at the time, manipulation was a handy short cut to steer things the way I chose later on. I was only strongly presenting the pro’s of what I wanted to do and none of the cons but still kinda manipulative.

Turns out I was so emotionally guarded (to make sure I didn’t get my very fragile emotions hurt), sarcastic (sometimes I was being serious), ironic (again thanks to my many observations of situations), totally calm in stressful situations (naturally detached) that my group of friends thought I was actually kinda cool. Bahaahaa! No. Apparently I was also cool because they (mistakenly) thought I didn’t care that much about social norms and had a strong sense of self. It was more that I just didn’t get them. Like when someone dies and you say “I’m sorry” to the relatives. My reply was “I’m not saying sorry. It’s not like I killed them!” Dark humour right? Nope. I did know exactly who I was but that was someone who was clearly from another planet. I had been getting the distinct message from teachers and society in general that I was wrong in some way, which was upsetting and so confusing. It was due to my amazing friends and in-part to my parents unconditional love and patience that I managed to cling onto my sense of self. Although I have to say, some days I was genuinely praying for the spaceship that must have dumped me here, to come back for me!

My naivety still effected me into my mid 20’s as a travelling temporary Admin Assistant where I wouldn’t be able to tell if groups of people were just humouring me and letting me hang out with them, as they felt too mean to ignore me. I would think I was genuinely friends with these people until others strongly hinted otherwise.

Empathy and Highly Sensitive Emotions

A lot of females with Dyspraxia and/or Aspergers feel emotions really deeply so things like a situation being unfair, involving us or another person can really bother us. When we empathise with some we really empathise with them to the point of feeling upset because they are and crying and we might end up crying with them! It took me all of my teens and 20’s to realise that even nice people don’t always behave in a fair way though, and just because you may have massively gone out of your way for someone many times does not always mean that will do the same for you.

Me: You didn’t do that really important thing for me that you said you would.

Friend: I was a bit busy with, er, something.

Me: But I did that thing for you that time, even though it was really inconvenient for me, which you knew.

Friend: I didn’t make you do it, that was your choice.

Me: Whaaa?????!

I realised that however that a) It’s not fair to expect everyone to be as emotionally involved and intense with everything as you are, including your friendship b) There is such a thing as being too nice to the point where people take you for granted or even take advantage. c) Self respect comes from setting boundaries with yourself and others. d) EVERYONE makes mistakes or forgets things, or stops paying attention, it’s human nature and it doesn’t mean they don’t care. However, it’s good to keep in mind just how regularly this occurs as they might be trying to tell you something!

Coping with Change and Unexpected Situations

I’m still getting there, day by day. However, I no longer have a melt down over takeaway orders being wrong – even if I’ve looked forward all week to the one thing they’ve forgotten to include. Recently my bloke suddenly suggested we go to a Thai restaurant in town which we’d literally just read about and which closed at 11.00. It was 9.30 so we had to go right away. I was in my PJ’s and in relaxed slob mode but I calmly said “Yeah let’s go”. I acted (notice I say ‘acted’) like a serene in control person the whole time I was putting together my outfit and tidying my hair and applying concealer all within a 20 minute time slot before the cab arrived.

That would have been completely out of the questions 6 months ago. The mere idea would have been ridiculous to me because I would have immediately felt anxious. Anxious because I hadn’t expected and therefore gotten my head around what was happening. I’d have been in the totally different mind set of “Of course I can’t.” It also helps that I have a little black dress which looks great with leggings and black boots. Simple.

It’s also about things not happening. Looking forward to going clubbing all week and then people saying they’re not in the mood. I’d be gutted. I’d planned it. I’d gone through scenarios in my head about it on a loop. ALL WEEK. I’d skip straight over distraught onto determined – determined that the person would go! Now I realise that’s selfish and slightly insane. I deal with unexpected situations a hell of a lot better these days. It’s all just part of life and no big deal most of the time. The unexpected can even be a good thing. That Thai place was great!

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I hope this has helped people to feel a little less weird or to be proud of how weird they are. Remember that your neuro-diversity means you are just different (to Neuro-typical people) and not inherently wrong. And as comedian Francesca Martinez says “What the F**k is normal anyway!?”

Chrissie

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10 Helpful Things Having Chronic Illness & Invisible Disabilities Have Taught Me About Life

  1. You get to know who your friends really are. When, in some people’s minds, it’s just easier to not hang out with you, it makes you value the ones who adapt and stick around so much more.
  2. Accepting your idea of fun is just as valid as everyone else’s. You should never be made to feel like you are supposed to be upbeat and super fun because you are hanging out with friends. If you just aren’t feeling it then it’s totally fine to P1000036 (1)say “Y’know what, I’d much prefer to just watch TV and chill with a pizza.”
  3. It’s so much easier to do tasks when you break it down into tiny parts. I tell myself ‘I’ll do this little bit for now….Oh well I might as well carry on and do a little more seeing as I’ve started.’ Suddenly the task that had turned into a massive mountain in my head (because I’d been putting it off) suddenly seems realistically achievable.
  4. You only have so many spoons. Yeah, I don’t get why ‘spoons’ have any relevance to chronic illness, even as a metaphor either. So I use the term ‘batteries’ instead. As a chronically ill person with two hidden disabilities I start of with less batteries to begin with and seem to use them up much faster as well. I’ve noticed sometimes that cooking the food uses up all of the energy that I’d be getting from eating the food so I’m actually in an energy deficit afterward. These days I stop for a quick rest in between doing tasks (sometimes in the middle of them) or I will put my pride aside and politely ask someone if they can help me out as I’m “low on batteries.” It’s a simple statement that people instantly understand and it makes so much difference to how much those batteries last.
  5. Know your worth.  I can’t tell you how many times I’ve been told things like “No wonder you’re tired if you didn’t go to bed until 12.00am!” and other flippant comments which utterly disregard how difficult and complicated the symptoms of chronic illness and disabilities are to cope with. I also get things like “Well no one else seems to mind that….” On these occasions I always breezily ask “Oh, does everyone else have the same sensory processing disorder/chronic fatigue/dyspraxia [insert relevant illness or condition] in exactly the same way as I do?” On days where I’m particularly brain fogged I’ve had people say “Don’t say things like that, it makes you sound stupid” when actually ‘just’ stringing a coherant sentence together is an epic achievement for me and I’m hardly trying to deliver a TED talk am I! Never let people treat you as if your illness/condition/disability is your fault or an annoying inconvenience.
  6. Getting dressed and out of your PJ’s changes more than just your clothes. It might use up all of the energy you have for quite a while but it will make you feel better emotionally in the long run. It makes you feel more like ‘you’ as you actually look more like you again. It can also make you feel less bound to being indoors and can encourage you to go outside, even just for a short while. I’ve bought lots of ‘chilling clothes’ which are cozy, easy to put on and look good together…Unless my brain fog means I put them on inside out!
  7. You will probably say or do something pretty goofy in public, either because of fatigue, brain fog, pain, your body going rogue and not behaving or all of the above. Don’t beat yourself up about it and try, if you can, to laugh about it. Adjusting your perspective can mean the difference between being mortified or having a laugh with a stranger.
  8. When you are having a good day or slightly better day, my gosh do you appreciate that day! That is all.
  9. It’s the little things that count so focus on what you can do. We had to cancel something we were really looking forward to last summer as the heat was so debilitating for me. Over that week we had a film night with my fave cheesy 80’s films and another with new superhero films and lots of junk food, we took the time to cook nice meals (I peeled the veg, that totally counts), went out to our favourite restaurant, met up with friends in town for a few drinks (and air conditioning), only for a few hours but still great to catch up. We also did a bit of shopping on one cooler evening and treated each other to lovely things. I couldn’t always leave the house and didn’t get up until 4.00pm some days but we really made the most of what I was able to do and it meant so much.
  10. Having a chronic illness, disorder and/or disability does not mean you are less-than other people or broken, it means you have to use all of your resources, will power and patience to do things, everyday, that everyone else takes for granted. You rock!

Bonus lesson

I’ve learned to be much more patient when people ask me questions about my conditions, even if they’ve asked them several times before. I’d much rather someone ask a seemingly silly question (as long as its an earnest one), rather than them making an incorrect assumption because it means they are making the effort to understand.

My Weird & Apparently Perplexing Disabilities & Conditions

Theres a lot of information to convey here so to stop you getting bored and to stop me getting totally lost in what I’m saying, I’m just going to list them, tell you when I first noticed them, when and who I tried to get help from and whats being done about them as they all kinda weirdly link up.

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Hyper-Thyroidism

In my early 20’s walking home from work ever night, I’d tell myself ‘I just need to make it to the next lamp post’ over and over until I got to my front door, I’d be that exhausted. It wasn’t until one day in work when I was slurring my speech, couldn’t walk or think straight that I (and my lovely colleges) got worried. I booked an appointment with my GP and was running late, he phoned my landline and when my Mum answered he began to question her about me possibly ‘burning the candle at both ends and partying, like these young one’s do.’ My Mum was gobsmacked and told him a) I was an adult and therefore he was breaking patient/Dr confidentiality b) I was a sensible young woman and if that if partying was the reason for the exhaustion I could have figured that out for myself and c) he was being very assuming, patronising and arrogant and the least you expect of your Dr is for them to believe you when you are clearly ill! He did a simple blood test and confirmed I had an under active Thyroid. Sadly, that was the simplest and quickest diagnosis from then on.

Massively Swollen Puffy Ankles and Feet

Aged 12 I went to my GP one summer and showed him my giant elephant ankles and feet. He immediately told me that I was obviously having way too much salt. I told him my parents brought me up to eat moderately healthily and I didn’t add extra salt to my meals and never ate ready meals. He told me to reduce my salt intake ‘drastically’. Years later in my early 30’s I mentioned to my mate that “My body just doesn’t sweat” so when I’ve been walking in the sun for around 40 minutes I feel nauseous, have a headache and feel really quite feel faint. He immediately looked concerned and asked if I was getting enough salt as you need a certain amount for your body to start sweating and to cool down so you don’t get heat stroke, which I’d been getting! Also the body needs a balance of salt, sugar and water (those electrolytes in those isotonic drinks everyone buys these days) in order for the body to function properly. As soon as I increased my salt intake I stopped getting the terrible swollen ankles and feet which had dictated my miserable fashion choices every summer for the past 20 years and I had lots more energy as I wasn’t dragging around pounds in water weight!

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Food Intolerance 

By the time I was in my mid 20’s I figured something must be wrong as was I tall and slim, yet I had a very distended round belly, like two thirds of a football. I looked four months preggers! I went to see a nurse and was told “Be glad your tall and slim in most other places, we can’t all look like a model.” and sharply asked “Is there anything else or is that ALL you came to see me for?”

A few years later I figured out it must be a food intolerance from several articles I’d been noticing in various magazines and went to see a GP. She agreed and told me to do a food elimination diet. When I asked for more information she looked at me like I was daft and said “You cut out most foods and then reintroduce them slowly. Anything else you need to see me about or is that it?”

It turns out after paying privately for a blood test along with a thick info booklet and food planner, that I’m intolerant to wheat and gluten and dairy and eggs and that symptoms aren’t always evident for up to four days. There is no way I’d have been able to figure out all of my intolerance’s and kept up a healthy diet on my own! Symptoms include bloating, facial redness, water retention especially in the face and stomach, skin itching, temperature fluctuations, constant thirst, headaches and stomach pains, sneezing, blocked sinuses/excess snot (sorry!) and fatigue. I’d had all of these all of my life (when I was a kid it was like I had the flu constantly. If I made it to school for four days in a row, it was miracle!) but the symptoms were never connected to food intolerance or even to each other.

Dyspraxia

Had this all of my life, first noticed by my parents and primary school teachers but not by my Dr who I’d been under since I was born! Teachers asked my parents, my parents asked my teachers, both were utterly baffled at my way of thinking and doing things. When I was 28 I read an interview with the singer Florence Welch who talked about Dyspraxia and it was an utter revelation!

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I asked a GP to get help with this aged 30. He was sympathetic to the amount of stuff I’ve always struggled with and amazed I hadn’t been diagnosed with disability as a teenager or at college. He astonishingly referred my to a Neurologist. These referrals are like gold dust! I then got passed between three of them because non of them dealt with Dyspraxia and didn’t really care or know who did. Five years later, yes FIVE, I’ve gotten a referral to a mental health team with maybe a years wait list to then get referred to some kind of Physiologist, hopefully the right kind.

Sensory Processing Disorder (SPD when your brain over or under processes stimuli)

A large amount of people with Dyspraxia also have SPD. I along with everyone else just thought that I have very particular quirks and like things just so, however as a kid I’d get really upset easily if I was too cold, too hot, the food ‘felt funny’ in my mouth, clothes were too scratchy or it was too windy etc. I have more quirks these days but get less annoyed/upset because I realise it’s just my sensory shit and I can find ways around it or ways to cope with it. Unless things I’ve been expecting and looking forward to something and then it suddenly changes, which really really upsets me as I feel sort of lost and bewildered. Lack of ability to adapt to new things is very common for people with autistic spectrum disorders. SPD and Dyspraxia kind of run parallel and overlap a lot with spectrum disorders you see so some people who have Autism/Asperger’s also have Dyspraxia.

I’m so glad I found blogs written by Dyspraxic people mentioning SPD because I then found an amazing Facebook group for SPD. We aren’t as unique and weird as we were made to feel at all and actually have masses of sensory quirks in common.

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I asked my Neuro (who denied this condition even existed and said ‘It’s just one of those things, your just being too sensitive’) to refer me to an Occupational Therapist (OT) for help with my SPD and Dyspraxia. She turned out to be clueless as to the term SPD, didn’t seem to understand what proprioception was (the feeling of where the outside of your body is compared to the air around it) or interpception (your bodies navigation system and steering and the way it interprets your senses. The ability to sense the position and location and orientation and movement of the body and its parts. Responsiveness to external stimuli; the faculty of sensation) because she kept just describing me as ‘clumsy’ which is ridiculously simplifying the problem and ignoring so many things which can be done to help with all of that, I later learned. Her advice with my severe memory problems (to the point I feel like I’ve got early onset Alzheimers a lot of the time) and wonky concentration was to print off a child’s work sheet from the internet suggesting I group things together that I’m trying to remember. Gee thanks, I could not have done myself – oh wait….

Demyelination (when the Myelin sheath which protects your nerves from damage is attacked by your immune system)

This was discovered by mistake when I had an MRI looking for reasons other than Dyspraxia why I might have had Dyspraxia all of my life as my Nuero thought there must be something else causing it. He happened to discover Demyelination which I can’t have had all of my life because it usually develops over time and from the age of around 20. It could be MS it could be something else. Whatever it is, my immune system is basically attacking healthy cells thinking they are invaders, causing them to wear and then to get damaged and then scar so the nerve signals get weaker or disrupted/distorted.

Hypermobilty – when joints are too flexible, which can lead to joint and muscle pain, joint stiffness and accidents and Arthritis, the auto-immune kind oddly enough!

A large majority of Dyspraxic’s are hypermobile. I’ve been having problems with my joints since I was 14 when one of my knees sublaxed, meaning the joint almost comes out of place but manages to just hang in there and in my case, rock back into place again. I was sent for an X-ray and told I was fine.

This happened three more times by the time I was 20 and it had gotten to the point were I was no longer able to run without my knees suddenly collapsing and I was in mild pain all winter. I complained to my rather perplexed GP and I got sent for another X-ray and again told I was fine and ‘it’s just one of those things’.

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So at the age of 33 I asked for a referral from my Neurologist (utterly incompetent as a Neurologist but he’d do any referral, just to get rid of me I think because I had ‘so many unusual difficulties’) to a Physiotherapist. She was a good laugh and patient with me but couldn’t understand why certain exercises hurt my joints, she suggested I wasn’t doing it correctly, then when she realised I was she just looked confused. Again I got the usual ‘just one of those things’ shrugs.

I asked for another referral to a different Physio “Someone who understands a lot about hypermobilty because my last Physio seemed to be utterly unaware of the condition/disabilty somehow.” A few days before my appointment I learned from the Physio’s secretary that my Neurologist had referred me for weaknesses in my forearms and wrists, not mentioning hypermobilty at all. Utterly irresponsible! If the secretary hadn’t have checked (after remembering my previous request) I’d have possibly seen a second oblivious Physio who, again, could have done more harm to me than good.

So this new Physio Dave was amazing, he not only understood Hypermobilty completely he was also familiar with Dyspraxia and two other related disabilities, one of which we both agreed I most likely have. He gave me brilliant (and realistic) daily exercises to improve my balance, co-ordination, control, strength and stamina. He’s referred me to a Rheumatologist who should be able to tell if I have Ehlers Danlos Syndrome and what type.

My GP (who was surprisingly familiar with EDS) asked me why I wanted the referral “because there’s no cure anyway.” I actually had to explain that if I’d have had a diagnosis years earlier I could have gotten help with so many health problems (which weren’t taken seriously) over my life, which have needlessly gotten worse and done damage so surely it’s better late than never?! Plus, EDS effects the heart so surely that should be monitored at least!

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Ehlers Danlos Syndrome

A certain amount of people who are hypermobile have EDS. It’s simplest definition is faulty collagen, meaning it can be dense in some areas and sparse in others like Swiss cheese, so totally uneven and far too stretchy – Jim Carey’s face has nothing on me! This can effect connective tissue (hence the hypermobilty), your heart valves (mine were faulty when I was born), your digestive system (it’s common to have intolerance’s to wheat and dairy and for it be slow in general, which I have), to have an underactive Thyroid, teeth and bone weakness (my teeth are terribly weak and wear down easily), visible small blood vessels like thread veins and bulging blood vessels (both of which I have on my legs – sexy), uneven collagen (my cheeks are like a relief map of a tiny hilly area, my gums are so fibrous that general anaesthetic is useless, my boobs are way too heavy for their size and I had terrible stretch marks by the time I was 14, I have some scars which are sooo soft as are the palms of my hands and feet incidentally but other scars which are way over the top compared to the initial damage), difficulty absorbing and using certain vitamins (I can’t absorb Vit B12 and need injections instead). There are literally no other symptoms left, I have them all. If these were Pokemon I’d be well chuffed.

Four things to add context….

Each referral to a new ‘specialist’ (I use this term loosely these days) takes between 3 and 12 months of waiting on a wait list. So nothing happens quickly.

Fatigue is increadibly common with people who have Dyspraxia and Hypermobilty because we have to work so hard just to do the simplest of things and my Demyelination also causes terrible fatigue especially in the heat. Oddly this has never been acknowledged by any of my GP’s a) because my Nuerologist hasn’t bothered informing them and b) they all consider it to be just a side effect that’s not serious, even though extreme fatigue (to the point where I sometimes have to be helped out of bed in the pm and with getting dressed) is the most debilitating thing I struggle with, at some point every single day and the reason I can’t work.

After asking a wide range of people in various forums and reading a lot on this subject, it would seem that a lot of people with hypermobilty, dyspraxia, EDS, Asperger’s and Autism seem to be genetically prone to food intolerance. Food intolerance is now thought to be auto-immune related (as our immune system reacts largely to the health of our gut). It’s fascinating (but rather logical) that what we digest can effect the auto-imune system, which in turn can effect the brain, which in turn goes full circle and has physical effects again!

I’ve changed Neurologists. My new one did lots of tests, said he was going to send me for more and actually seemed to understand the terms and disabilities I was referring to – hurrah! Shit, I forgot to ask him to inform my GP’s that my extreme fatigue is very real and why. Looks like I’ve got a phone call to make.

It’s utterly exhausting researching my conditions and deciding on which referrals I need and caring for myself while I wait.

Zzzzzz

Chrissie

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