Sensory Q&A Answers!

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Thanks everybody for your awesome questions! I got quite a few and I have answered them all individually below:

Which Disney character is your favourite?  What’s your favourite pizza topping.  What’s your #1 sensory nightmare?  #Thanks! From @adam62139
Hi Adam! Thanks so much for your question! Oooooh thats a difficult one. I am actually not a massive fan of disney (*hides from disney superfans*) I find disney films too much to handle emotion-wise because I cry at happy and sad parts! Butttttt if I had to choose a character I would maybe say Pip from the film Enchanted (2007). Pip is a chipmunk who is ADORABLE and I can do a great high pitched squeaky impression of him. I think Pip is small, challenged by the big outside world but is brave and tries to be fearless which is a bit like me…
I love PIZZA! I only eat margarita pizza though so my favourite topping is just cheese 😀
OOOOOOOH. Hard question there! I would say my number one sensory nightmare is being in a loud environment. E.g it could range from a concert environment to a loud restaurant! I am just awful with noise.
Have you used weighted blankets? If so, did you increase the weight of it as you grew?  Did you ever stop using it? From @mikeblair3
Hello! And YES. I love my weighted blanket and have used one since I was about 8ish years old. I got my current one from Sensory Direct (UK) on their website it states that:

‘One of the generally accepted principles of calculating the correct blanket weight is to take 10% of the users body weight and then add a pound. eg – if you have a child that weighs 5 stone this equate to 70lbs (5 x 14). Take 10% of 70lbs = 7 add a further 1 = 8lb blanket’

I definitely increased the weight as I grew as I found I needed more pressure and a longer blanket as I grew! I have done a blog post on my experience hiring and then buying a weighted blanket which might help further here

I unfortunately suffer a lot with night sweats so I find especially in the hotter months I have to sleep without it. I put my weighted blanket (in its own cover) over the top of my existing duvet.

Do you use any other tools or equipment to help? From @sensarounduk via Twitter
Hi! Good question – I have a Sensory DIY box that I use quite a lot. I find brushing my body really helps me and my mum is forever reminding me to do more brushing as part of my ‘sensory diet’. Sometimes I find a real need to walk and bang into walls and interact with the space (with my arms crossed over my chest so it doesn’t hurt) so I find things like walls are great for sensory input. Occupational therapy also works absolute wonders and equipment like awesome hanging swings, yoga balls, etc are also great for spatial awareness and getting sensory feedback. I also adore my ear defenders which are noise cancelling and help me cope in the world.
Hey! I have two questions, I don’t know if you’ve written about these things before here, but here they are: Do you use a time management or task management system? If yes, did it help with SPD? From M.O via comments.
Hi! Thats a great question. I literally LOVE managing my time and using to-do lists, schedules and mobile apps to help me be more organised. I use apps such as IOS Notes, Evernote, To-doist, Google Docs/Sheets, iCal and the IOS Reminder app to name a few! I also love to create mind maps and draw things to remind myself of objects, etc. Let me know if there are any good things you recommend or know of!

Do you feel scared when you have a melt down, not to be in control of your body? xxx From Many of Us 1989 via comments.

Hi! I do feel very scared and also very very alone when I have a meltdown because I cannot explain how I am feeling or acting. I can only express myself in physical emotions which is usually in the form of crying. Crying obviously draws attention to me which means I get asked a lot of questions but I can’t answer them as my body is effectively logging off and shutting down like a computer!If you look on the National Autistic Societies website theres a great quote: ‘If I get sensory overload then I just shut down; you get what’s known as fragmentation…it’s weird, like being tuned into 40 TV channels.’ This is exactly how I feel!

What are you most over and under sensitive to and what are your copping strategies? From Chrissie via comments.

Hey Chrissie! I am most oversensitive to:

  • Loud noises
  • New foods or anything with any herbs or spices
  • Sudden or unexpected touch
  • Most smells that aren’t neutral and I dislike people with distinctive perfumes, shampoos, etc.
  • Most textures (even underfoot when walking!)
  • New environments
  • Crowded places
  • Bright or flickering lights
  • Supermarkets – they are too colourful with all the products!
  • I have an inability to cut out sounds like background noise, leading to difficulties concentrating.
  • I have a low / non-existent pain threshold (even though I don’t think I do because everything that hurts REALLY HURTS to me!)
  • I can only tolerates certain types of clothing or textures.
  • And much, much more that I can’t think of right at the moment!

Under sensitive:

  • To the space around me. I cannot walk in a group of people – I constantly bash and walk into others!
  • I have to have tight hugs and use a weighted blanket because I find touch very difficult.
  • I have the need to rock and swing to get some sensory input.

 

Sensory Q&A!

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I know I haven’t blogged in around a month…so I thought it was about time to get back to it! I also thought I would do another Q&A as I got quite a few questions last time and thought some of my blogs new followers might have some questions 🙂

Feel free to comment a question below (it doesn’t have to be specifically sensory related don’t worry!) I will also post a tweet on my Twitter page asking for questions too.

Keep your eyes peeled for a post with all the answers soon…

Sensory & Alcohol

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This blog post has been in the pipeline for a while for a number of different reasons…

  1. It’s something I’ve always wanted to cover in more detail on my blog.
  2. It’s something that seems to be affecting me since I was 18.
  3. It’s something that continues to frustrate me.

Alcohol.

I don’t understand why I (or anyone else) should ‘have’ to drink to fit in.

I don’t understand why if I don’t drink I’m seen as being a ‘party pooper’ or ‘no fun’.

I don’t like the taste of alcohol. I could quite easily live in a world without it. But since having a boyfriend I feel I have had to introduce myself to alcohol so that I can fit in more and act my age. I am able to drink Malibu and Coke, Pimms and Archers with Lemonade.

I find it hard enough to cope in a busy, noisy, party-like environment as it is – I don’t need alcohol to mess with my thinking and senses further. I am aware drinking can somewhat ‘dull’ a persons senses but I really don’t think dulling my senses is a good idea… and even if it was, the feeling wouldn’t last forever and I’d be back to square one.

I like soft drinks. I am happy with them. I know what they taste like. I know what to expect. I know they aren’t too strong or weird tasting. They actually provide comfort especially when given to me in an unusual and unfamiliar environment.

Friends and family members continue to offer me alcohol because I am 22 and ‘it’s the done thing’. They know I’m not mad on alcohol but still offer me wine,etc. I appreciate when people buy me alcohol such as Malibu and coke because they know I like it. I also appreciate that people forget I don’t like alcohol when they ask me what I’m drinking or other questions.

Do you drink alcohol or not? How do you feel about the subject? Feel free to discuss in the comments below…

‘Making Sense’ Book Review

I was given ‘Making Sense: A Guide to Sensory Issues’ as a birthday present in May. I’ve finally had the chance to properly read it as I’ve recently finished and graduated from uni. The book is written by the lovely Rachel S. Schneider from Coming to My Senses (www.comingtosenses.blogspot.com) and here is a little bit of background on her:

Rachel always found herself particularly sensitive to light, sound, and movement, and she frequently felt disconnected from her body and anxious about the world around her. After years of misdiagnosis, she was found to have SPD in 2010 at the age of 27. Since 2010, Rachel has become an advocate and leader in the adult SPD community’ (Excerpt from Amazon ‘About Author’ section)

I always ALWAYS in the past have got my hopes up when I have been bought or given a book to read regarding Sensory Processing Disorder. However I usually find I end up disappointed as many books are based on toddlers and children and I just can’t relate to anything they say or suggest doing.

BUT…Making Sense is SO so different. This book is PHENOMENAL (This is not a word I use lightly or usually know how to spell!)

Rachel just ‘gets it’ she writes in a beautiful, comical, simple and engaging way that is easy to understand. I have learnt a huge amount from this book including…

  1. We have 8 senses?! Not 5!
  2. There are 3 sub-types of SPD – who knew?
  3. We have sensory organs (Interception being the ‘internal sense’)
  4. Our brains are fully developed by the age of 25 and what ‘neuroplasticity’ means and how important it is.
  5. The difference between a sensory meltdown and a sensory shutdown.
  6. Interesting studies that have / are going to research in SPD and links to neurology and possibly genetics.
  7.  Awesome treatments, therapies and tools for coping with SPD (weighted sleep masks and tinted glasses might just change my life!)
  8. How to stop bad thoughts from whirring around your head.
  9. How amazing ‘hitting the deck’ as an exercise really is and how to recover from a sensory hangover.
  10. What a ‘handler’ is and how important they are to anyone with SPD.
I have learnt so much that I had never come across before and I was diagnosed with SPD aged 8 (meaning I’ve read most sensory books, articles and websites out there!) and I promise you this book is just one of a kind. I don’t want to spoil or mention to much about the contents of the book in my review but I super dooper recommend buying it! It’s worth it and you’ll find yourself returning to it again and again.
One of my favourite quotes from the book is:
Someone with sensory issues doesn’t just merely end one task and begin another. We don’t simply leave the supermarket and step out into the street – we change sensory environments.

This is just SO true and something I relate to so much. I am constantly changing sensory environments and this is what’s super difficult about living with SPD. This is all invisible to everyone around me and Rachel just summed this up so well.

The book can be read cover-to-cover but also equally can be read by jumping to chapters you would like to read. One thing I want to just mention is that I found this book hard to read because of my SPD as things I read triggered feelings and my sensory problems. If you do have SPD don’t let this put you off at all just read it in chunks (which I did which turned out to be ideal).

However if you are a neurotypical or parent/guardian/therapist/etc you’ll have absolutely no problem reading it. I would recommend the book to SPD teenagers and adults but also parents of SPD people whether they are children or older. Rachel really provides an insight into everyday living with SPD that I feel everyone could benefit from reading and understanding.

The book has the most amazing illustrations done by the super talented Kelly Dillon from Eating off Plastic (https://eatingoffplastic.wordpress.com) I found I could relate to each illustration as they were so funny and true which made me laugh quite a lot…!

This book also touches on SPD in relation to mental health but also Autism (ASD) this was insightful. I learnt that SPD can mimic mental health disorders and although Autistic people have sensory difficulties, a person can have SPD and not be autistic (like myself).This was a super interesting read too as my brother is Autistic (he is a sensory seeker though, whereas I am a sensory avoider!) but I learnt so much about the similarities and differences between both ‘disorders’.

Okay so let’s wrap this review up nicely…This book is the most informative book on SPD that I have ever come across. This book sums me up as a person and I will be lending it to multiple friends and family because it really is so informative. This book really is phenomenal.

‘Making Sense: A Guide to Sensory Issues’ is available to buy on Amazon for £11.95 (totally worth it – treat yourself!)

Growing out my nails (for the millionth time)

Yup you guessed it (well the title kind of gave it away let’s be honest….) I’m growing out my finger nails yet again and trying (like really trying) to not bite them. If I’m worrying, or nervous, I immediately start biting my nails without even thinking. I think it works as a distraction, but obviously it’s not a very nice one.

I’ve posted before on my blog about growing out my finger nails. I’ve always started and then got frustrated or annoyed with how they feel and gone back to my old ways. However this time I am determined to avoid biting them. I realise that my hands don’t particularly look very nice or professional for someone who’s 22 years old, so that’s my motivation behind stopping…

Anyway… I was saying to my mum last night how weird my fingers feel like having more of a proper nail to them. Like they feel different (like heavier kind of) and my brain is almost having to get used to moving them again because they feel different. Weird huh? I guess it’s just my sensory side trying to get used to something new all over again, but I’d thought I’d share how it feels!

Anybody else have annoying habits that you want to stop? Any good coping mechanisms? Let me know in the comments below ☺️

Mobiles, Technology and SPD…

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I’ve come to the realisation lately that I always have my phone on silent. Like 24/7.

This can bug people.

I miss texts and calls but I literally jump if my phone makes a noise and I never EVER EVER have been able to tolerate it on ‘vibrate’. I have an iPhone and have never had the vibrate feature on and always have ‘Do not disturb’ on. My phone is usually on me, either in my pocket or a bag so it’s not like I forget my phone I just don’t like the noises of notifications (but don’t want to turn them off and miss even more!).

Even if someone else’s phone vibrates on the table next to me its enough to send my heart crazy like a surge of adrenaline releases and I have to calm down without anyone realising by slowing my breathing. As I’ve said before, and I will say it again, I’m rubbish with surprises!

This leads me on to more phone and technology related stuff…

I came across a girl I follow on Twitter talking about how she has ‘hearing motion synaesthesia’. Now I didn’t realise that hearing motion could come under synaesthesia which was the first thing I found immediately interesting… (In case you don’t know according to dictonary.com synaesthesia is ‘A condition in which one type of stimulation evokes the sensation of another, as when the hearing of a sound produces the visualisation of a colour’.)

The girl tweeted about how she heard motion sounds when looking at GIFs on Twitter and could not control this. GIFs (if you aren’t already aware) are a type of image file that support animated image – without sound. I also struggle with this and have written in the past on this blog about how I can hear motion even from different distances. For example say I can see someone running but they are not near me they are across a park from me, I can hear a kind of pattern that relates to when their feet hit the floor.

This hearing motion type of synaesthesia can get very wearing on a person. Even if something isn’t making a noise like a GIF or people moving my brain substitutes that silence with a noise or sound that relates to any pattern it can find in the moving object. This is confusing to write about and even more confusing to try to explain to someone face-to-face…!

Do you hear motion? Or do you have synaesthesia? How do you cope? Let me know in the comments below…

My weighted blanket hire review!

So I wrote a post a while back (read it here) explaining that I was about to hire a weighted blanket from a company called Sensory Direct (www.sensorydirect.com). So I had been using the weighted blanket on trial for two weeks and absolutely loved the weighted blanket! I needed a new one as I still had a child sized one which would slip off me in the middle of the night. The child one I had was 2.2kg and my suggested blanket weight in relation to my body weight I discovered was now 6.0kg! So the hire blanket allowed me to trial a MUCH heavier weight on top of me.

I trialled the large adjustable weighted blanket: click here to see the blanket

The large size is the exact same size as a single bed / single duvet cover and is designed to be placed over existing bedding. The blanket is adjustable and also fully washable with interchangeable weights and is suitable for older children and adults. The weights are contained in  tamper proof pockets which means that there is an even weight distribution across the blanket. The blanket I trialled is available in six weights from 3.2kg to 9.5kg (see their guide to pick the right weight for you!)

Sensory Direct then give customers these 3 options after a trial period of 2 weeks:

  1. You decide a weighted blanket is not for you and return the blanket to Sensory Direct.  (You will be responsible for the cost of returning the weighted blanket.)
  2. You decide that you would like to purchase a weighted blanket.  They will take payment for your new blanket and get it sent out to you straight away. With your new blanket they will send a Prepaid Returns label for return of the hire blanket, so you will not be without a weight blanket at any time (which is super clever huh?).  Once they then receive the hire blanket back the rental cost will be refunded to you.
  3. If you are still undecided you can extend the hire period for £10 per week.

My hire blanket was sent with the most beautiful light greeny cover already on it (£19.95 to buy) I decided after my trial that I loved the weighted blanket they sent and the cover colour so much that I went on and bought both! (my birthday present from my kind parents).

I love the idea of trialling a weighted blanket in order to see if it’s the right weight and is comfortable for each individual and I liked the idea of not having to commit to purchasing one until I knew if I happy with it or not. My new weighted blanket was sent out SUPER quick and I am about to return my hire one with a pre-paid label in the box it came in which will be super easy!

If you would like to hire a weighted blanket click here. They also do VAT Exemption for people who are chronically sick or have a disabling condition (see their website for more details). Any questions feel free to ask me in the comments below! Also please note this is not a sponsored post at all – I just thought I would write about my experience with Sensory Direct (UK Based).

My Sensory System

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This is a drawing I did which I found whilst clearing out my bedroom. It’s probably 2-3 years old but I felt it was still relevant to me today. The lines represent music ‘faders’ like you see a DJ or radio station using. My bodies ‘faders’ are always on full 24/7. This is very hard to deal with 😓

Sometimes I can hide my sensory problems. Other times I can’t and I erupt into a meltdown and have weird and unexplainable emotions. But I’m learning each day that this is how I am. I cannot change my sensory processing disorder. But I can damn well try hard to manage it ✨

I have no real routine at the moment (uni has finished and I graduate in a month) apart from work every weekend. This is hard but is one of the reasons I’m actually looking forward to getting a full-time job

Does anybody else feel like their ‘faders’ are always turned up to the highest sensory setting? How do you cope when you feel overwhelmed? Feel free to share in the comments below!

All of the questions…

Okay so I put out a blog and twitter post asking you lovely people if you had any burning questions you’d like to ask me or if you would like to see a specific topic covered on my blog…so here goes!

M.O asked:

Do sensory difficulties get more intense when you get sick, like a cold, for example? It happens to me and, as I haven’t been diagnosed yet (still looking for the right doctor), I wonder if this happens to other people with sensory issues. Thanks!

Okay lets see..thank you for the question first of all! I think my sensory difficulties definitely 100% get much worse and more intense when I am ill. I have a very low pain threshold even when I’m not ill so when I’m ill everything seems a lot more painful for some reason! I think I drive my family slightly mad when I’m ill as I’m a complainer and I hate being ill because I like to have a routine and be productive each day and being ill messes with that. I think my senses are all over the place and are very heightened when I am ill so someone touching or brushing up against me will take me longer to process and calm down from then it usually would if i felt okay. I’m 21 and haven’t found one doctor yet who thinks that SPD or my sensory problems are ‘real’ they will only ever take into account my medical history and not my occupational therapy that I have had on and off since the age of 8…maybe we will find understanding doctors one day! (Have a read of my blog post when I had the flu not too long ago for more info!)

Tangerine asked:

OCD would be nice to see, maybe even how it can interact with sensory issues…

That is a great question…I find my OCD comes and goes and it seems to be the worst when I am stressed or anxious. For example when shopping I used to have to touch a product I saw or wanted to buy off a shelf with both hands. I also had to touch stair rails or railings with both hands – I think it was to do with having the same sensation / feeling in both hands otherwise I felt unbalanced. I also have found when my anxiety is worse I tend to count windows on buildings to distract myself and wash myself/my hands quite a lot.

I will definitely write a post soon about how my OCD and sensory problems affect me (do have a look in my blog archive at my past OCD posts if you like).

Mikayla asked:

I would love to hear about how (SPD, anxiety and sensory issues) affects your relationships?

Again another really interesting question – thanks for getting in touch. I think I will break your question down into an SPD answer / an anxiety answer.

So from a sensory side of things my SPD definitely affects relationships (family and boyfriend). I’ve always found touch extremely difficult to process especially if it’s when I’m not expecting it (I hate surprises of someone touching me from behind). I also find scents like aftershave and perfumes hard to deal with on people and find that when I leave another persons house I find that I have shower/have a bath as I can’t deal with a lingering smell on my hair, clothes, etc. Its hard having SPD and being in a relationship as a relationship can affect all of a persons senses, sometimes all at once.

Anxiety-wise dating was a nightmare…I found it hard to eat in front of my boyfriend say at a restaurant and would have to escape to the loo to compose myself as the restaurant environment was too loud and overwhelming. I found that knowing my boyfriend as a super good friend before I started going out with him really helped me as I knew him beforehand and slowly he began to understand my difficulties and my sensory issues. I sometimes have to cry when I get overwhelmed which is unexpected even for me and I can’t control when I have a sensory meltdown so that can be hard too. It’s also only natural for people to get frustrated with me when I’m having a meltdown as although they understand what I might be going through they have never experienced it themselves.

Hope I kind of answered your question there!

Adam asked:

How about ordering food in a restaurant? So many competing sensory inputs…

ORDERING FOOD IN A RESTAURANT IS AWFUL. Haha blunt but I speak the truth…its indeed very hard because I cannot hear properly because of all the people talking, I’m dyslexic and never know how to pronounce fancy words and (like I’ve said in a previous post) I never feel full in a restaurant because they are so noisy that I think it throws of my senses and I don’t have the sensation of being full…weird I know!

So what do I tend to do…?

….I suck up all my anxiety and quickly point at the menu and attempt to say the dish! 🙂

Stacy asked:

Why does having a jacket on or weighted blanket make one feel better? What is the cause?

Hmmmm. It’s a great question but super hard to actually explain! I think the weight has a very calming effect like having a tight hug. I find a weighted blanket especially helpful at night – I think I definitely sleep better with one on top of my duvet as its like an even pressure on my whole body which is calming and can help me calm down if I’m overwhelmed sensory-wise.

I’m not sure if there’s any science / scientific explanation as to why a weighted blanket works but I know many people and children who benefit from using one on a regular basis – hope this helps!