Cholinergic urticaria…and what on earth it is.

I now know (it was/has been a long winded process) that I suffer from something called Cholinergic Urticaria. ‘But what the hell is that Emily’ I hear you ask…

Things from the beginning (this post is roughly a 10min read):

I am a hella sweaty person. I wasn’t always though. Since I was around 16 years old my sweatiness just continued to ramp up and up every year. I just seemed to be always sweaty no matter the time of year, the temperature, my environment, etc. I get it worst under my arms and on the palm of my hands. This is referred to as having ‘Hyperhydrosis’ which is a very fancy medical term for a person who suffers with excessive sweating. I tried numerous treatments for my sweatiness like special deodorants, sprays, and even a treatment called Iontophoresis.

The Iontophoresis treatment consists of a medical device which is used to pass a mild electrical current through water – you pop your hands/feet in the water dish (or use pads under your arms). This method is apparently shown to dramatically decrease sweating. However this didn’t prove beneficial for me – and it is super expensive if you want to do it at home for yourself. I had scheduled appointment sessions for it at my local hospital and luckily had access to it via the NHS (UK).

I also began to realise steadily that I was now suffering from more and more night sweats (like soak the bed, change your PJ’s immediately, I-need-a-shower-right-now-oh-no-I-can’t-it’s-flipping-3am) and then the FLUSHING turned up. Yup I’d get random flushing attacks every few days . My flushing was bright red tomato-like all over my face and on my hands too. This past year the flushing just became steadily much worse and I was having flushing attacks 1-3 times a day.

This made life BORING. I felt like I was constantly washing because I always felt sweaty.

And then… I slowly started to realise that foods were affecting my flushing. Hot food, hot drinks and tomatoes seemed to make me flush very violently and made me so blotchy like a rash. I used to love tomato soup – but I actually looked AWFUL after having some because it was a hot food full of tomato (this was my guess!).

I use to go to the gym near where I live but I stopped going because after 5-10 minutes of running/exercising I would look horrific. I had a horrible blotchy bright red face that was so hot and itchy and my arms and hands were bright red and would feel like they were burning. The redness wouldn’t settle down for up to 2 hours after going to the gym. I also suffered from this whenever having a shower or bath which was frustrating to deal with.

Social situations were becoming an absolute nightmare and still are to this day! As if I didn’t have enough to worry about sensory-wise and anxiety in general about social situations I now would go bright red and blotchy all over my face whenever I ate out or was going from indoors to outdoors or the other way round. My face just burned and felt red hot. People continued to point out:

  • ‘Emily’s gone all red!’
  • ‘Aww you’ve come over all embarrassed!’
  • ‘Why don’t you just take your jumper off if you’re hot?!’ (it’s my face that’s hot – I can be absolutely freezing and have cold hands but a flushed face!)
  • Also one of my favourites (not) ‘Do you know you’ve gone bright red?’

YUP. It’s my face – I’m quite good at knowing when it’s red BECAUSE IT BURNS and is NOT COMFORTABLE (rant over!).

So: I went to my GP and explained I was getting these weird flushing attacks and that I really wasn’t quite sure what was happening. Was I allergic to certain foods? Did my sweating have anything to do with my flushing? I was prescribed antihistamines to see if they made any difference.

I then waited 6 months for an Immunology / Allergy clinic appointment at my local hospital. A super lovely doctor started righttttt from the beginning of all the symptoms I had been experiencing over the years and at the end of the appointment explained that I had:

Cholinergic Urticaria…

Cholinergic Urticaria is a medical term used to describe ‘physical urticaria’ also known as hives. It is recognised by a hypersensitive response the skin has as a result of the body increasing in temperature and the release of sweat. “Why do I itch when I get hot or exercise?” is also the most common symptom experienced by other sufferers.

Individuals may experience a cholinergic urticaria reaction in response to any activity that increases overall body temperature (or causes a sweat release).  Some examples include the following:

  • Taking a hot shower or bath
  • ShowerSweat-MemeEating spicy foods
  • Exercising or doing physical activities that increase body temperature
  • Stress or anxiety
  • Emotional responses (sadness, anxiety, anger, laughing)
  • Transitioning from a cool environment to a hotter environment without allowing the body time to slowly acclimate to the temperature difference (such as walking from a cold room to a hot room)

THIS LIST EXPLAINED ALL MY SYMPTOMS. I cannot take a bath or shower without going red and blotchy. I can’t exercise without looking like I’ve been severely sunburnt, I get awful flare-ups when I am anxious, stressed, emotional and when I change environments! (However I luckily don’t like spicy foods!).

So to put it simply… I am pretty much allergic to my own sweat. When I thought I was having flushing attacks I was actually breaking out in blotchy hives. The doctor explained that being allergic to my own sweat (when I am the sweatiest person on earth) is a pretty vicious and never ending cycle. This was not the greatest thing to hear but it was reassuring to hear a doctor understanding my predicament.

When Googling about the condition I came across a lot of news / health articles that simply said ‘Woman is allergic to exercise’ like some sort of gripping news headline meant to attract readers. This was slightly disconcerting but also exactly what I felt like.

Anyways! Currently scientists and researchers don’t actually know why cholinergic urticaria (or heat hives) develops, or what causes it. Some research indicates it could be down to an autoimmune condition to one’s own sweat or ‘sweat serum’. Other studies, however, have suggested it could be a result of an allergic component or even a blood disorder.

There is no cure for Cholinergic urticaria, and treatment options are often limited. Some common treatments include taking antihistamines (such a Allegra, Zyrtec, or stronger ones), avoiding known triggers (such as hot weather, physical activity, and spicy foods), corticosteroids (only for extreme cases), anabolic steroids, UVB therapy, sweat/exercise therapy, diet changes (such as avoiding known trigger foods), and more.

Cholinergic urticaria often changes, much like season allergies or other allergic conditions. Individuals may experience periods of heightened sensitivity, as well as periods of almost no reactions or very low sensitivity. This can sometimes be affected by seasonal weather, as well as other unknown factors. This condition may last for months, years, or may even go away and come back sporadically throughout one’s live.

In one study, the average duration was approximately 7 years, although some people had this condition (on and off) for up to 30 years. Even though this condition may be long-lasting and highly variable, individuals suffering with this can often find treatment regimens that enable them to live a relatively high quality of life and go on to work, go to school, and engage in other activities.

So I am now on 4 antihistamines (2 taken in the morning and in the evening) and trying to avoid – but sometimes giving in to – trigger foods. Here is a list of the foods high in histamine for anyone interested:

Histamine Rich-Food:

  • Fermented alcoholic beverages, especially wine, champagne and beer
  • Fermented foods: sauerkraut, vinegar, soy sauce, yogurt,etc
  • Vinegar-containing foods: pickles, mayonnaise, olives
  • Cured meats: bacon, salami, pepperoni, luncheon meats and hot dogs
  • Soured foods: sour cream, sour milk, buttermilk, soured bread, etc
  • Dried fruit: apricots, prunes, dates, figs, raisins
  • Most citrus fruits
  • Aged cheese including goat cheese
  • Nuts: walnuts, cashews, and peanuts
  • Vegetables: avocados, eggplant, spinach, and tomatoes (this explains a lot!)
  • Smoked fish and certain species of fish: mackerel, tuna, anchovies, sardines

Histamine-Releasing Foods:

  • tomatoes1Alcohol
  • Bananas
  • Chocolate
  • Cow’s Milk
  • Nuts
  • Papaya
  • Pineapple
  • Shellfish
  • Strawberries
  • Tomatoes (this explains a lot!)
  • Wheat Germ
  • Many artificial preservatives and dyes

The antihistamines have helped a bit although I still suffer with 1 or 2 flare ups everyday and the night sweats don’t seem to want to give up. Maybe I’ll do an update to this post at some point in the future…

So apologises for the ridiculously long post but that was my weird old journey to finding out that alongside my SPD I also have Cholinergic Urticaria!

Cure/treatment options quote: www.cholinergicurticaria.net

Foods list: www.mindbodygreen.com ‘Everything you need to know about histamine intolerance’.

Hello to you 👋

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Hello to you – I’ve recently had an influx of lovely new followers here on my blog and on my Instagram page! So I thought why not give everyone a little intro (or refresh!) on who I am and why I blog about sensory stuff. To me there is no better way then a good old-fashioned drawing to explain a bit about myself!

Summary of my drawings in text:

  1. I’m Emily, I am 23 years old and I work as a Creative Designer.
  2. I have Sensory Processing Disorder: a neurological disorder that (put simply) makes it hard to receive information to my brain. SPD is a neurological traffic jam and info I receive through my 5 senses doesn’t get organised or detected properly. This means my 5 senses are constantly overwhelmed and overworked so the world is a sensory place for me. SPD creates challenges in my everyday living and performing tasks. I was assessed / diagnosed with SPD aged 8 by an Occupational Therapist (OT).
  3. SPD described in a sentence: It’s like receiving every sense all at once: touch, taste, sight, smell and sound!
  4. I was 21 when I began blogging – hence the name ’21andsensory’. I decided to start documenting my sensory life right here on this very blog. I share tips, tricks, experiences, reviews and much more!
  5. I also experience/have/suffer from: anxiety, dyslexia, mild OCD and hyperhydrosis (excessive sweating and flushing)
  6. I even have my own sensory podcast…! You can have a listen here if you like. Also available through Apple Podcasts and Google Play.

So yup that’s me in a nutshell.

Blogging as a sensory-being in a super-sensory world!

DIY Sensory Box: A VIDEO?!

I have decided to do post an updated sensory box in the form of a video (fancy I know…)

The last time I photographed my sensory box it was super popular (and was at the very start of my blog: see it here) so I thought it was worth doing an updated version. I’ve included all the things that I use apart from 2 things:

  1. My weighted blanket: It’s flipping huge and I can’t fit it in the box but it is something I use daily…
  2. My wave projector: Again it’s just too big to fit in the box but something I use every night!

Product Links:

Do let me know what you think and if you have a sensory box or fidget toy box too! Also do comment below this post if there are any future videos you would like to see from me.

Please subscribe to my YouTube channel here!

I am a Chewigem Affiliate! They are company who have years of experience, designing, adapting and creating a range of chewing, fidget and sensory aids for children and adults. Check out their website.

Documentary Review: Aspergers & Me

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A couple of weeks ago I sat down to watch a documentary called ‘Aspergers and Me’ and I found it very thought (and feeling) provoking. I wanted to write a little review of it here on my blog to share with others…

The documentary follows a man called Chris who happens to be a BBC wildlife presenter. So here’s a little introduction to him:

“For most of his life, broadcaster and naturalist Chris Packham didn’t tell anyone about the one thing that in many ways has defined his entire existence. Chris is autistic – he has Asperger’s Syndrome, which means he struggles in social situations, has difficulty with human relationships, and is, by his own admission, “a little bit weird”. (BBC Media Centre, 2017)

Like 700,000 or so others in the UK, Chris Packham is autistic – he has a developmental disability affecting how he relates to other people, and also how he experiences the world. Specifically he has Asperger’s syndrome. His documentary invites us inside his autistic world to try to show what it’s really like being him. He lives alone in the woods with his ‘best friend’ who is called Scratchy. Scratchy is THE CUTEST dog; but Chris also has a long-term partner, Charlotte, who discusses the problems Asperger’s creates in their relationship – she describes Chris as being sometimes “like an alien”.

Chris experiences the world in a very different way, with heightened senses that can be very overwhelming. He grew up at a time when little was known about autism. Chris wasn’t diagnosed with Asperger’s until he was in his 40’s.

However with todays modern and scientific advances new possibilities are being offered to treat his condition. In the documentary Chris travels to America to witness new and quite radical therapies that seem to offer the possibility of entirely eradicating autistic traits. On the flip side of this Chris also meets those who are challenging the idea that autistic people need to change in order to fit into society. He visits one of many special schools in the U.S where children undergo repeated behaviour modification, in order to try to make them more normal. This makes for uncomfortable viewing.

Chris continues his travels, this time to Silicon Valley, one of the places where people with autistic traits are making massive contributions. Tech companies are slowly breaking the stigma and learning about untapped talent of autistic people. These people who are considered and often referred to as weird, geeky or lonely are starting to run the world.

Chris ultimately explores the question of whether he’d ever want to be cured himself, or whether Asperger’s has helped make him who he is today…

Would he ever choose to be ‘normal’?

“I’m anything but normal,” he agrees, staring at the floor. “I experience the world in hyper-reality. Sensory overload is a constant distraction. I’ve just been for a walk in the woods, and it was very different for me than it would be for you – the sights, the smells, the sounds.” He frowns, and glances at his partner, 41-year-old Charlotte Corney. “But we need to go to the supermarket later, and I’ll do anything to get out of it because supermarkets are a swamping of the senses. The lighting is hideous, it’s crowded, and the complex of smells is overwhelming.”                                                   (Chris Packham, Radio Times, 2017)

He is very good at getting across some idea of what it’s like to have a brain that is different, the sensory overload he experiences, sounds, smells and tastes. But what if there was a way of taking away these autistic traits?

“If there were a cure for Asperger’s, I don’t know if I’d want it. Humanity has prospered because of people with autistic traits. Without them, we wouldn’t have put man on the Moon or be running software programs. If we wiped out all the autistic people on the planet, I don’t know how much longer the human race would last.” (Chris Packham, Radio Times, 2017)

That’s the key, Chris says: not trying to change people, but learning to better understand and adapting to accommodate them. And, with this awesome and insightful documentary, he is really doing something to help with that.

The documentary was first aired (UK) on BBC Two, Tuesday 17th October at 9pm.

An Insight: The Fluorescent Jacket…

Why on earth am I writing a blog post about a Fluorescent jacket I hear you ask…just bear with me and read on:

Picture the scene: I am working away at my desk and at around 9.05am one of the company directors get into work. All normal and well so far. He then proceeds to hang up his fluorescent bike jacket on the hook by his desk. Now this jacket is visually brighter than the sun to a sensory being like me…(I realise this sounds utterly ridiculous but stick with me).

This jacket is in view just behind my laptop screen and is immediately screaming at me visually. It is so loud almost like a noise to me and is instantly distracting and grates on my mood.

I think back sometimes on how I feel when things like this affect me. They seem so big at the time and engulf me, taking up all my thoughts and feelings. How crazy is that? A bright neon jacket can affect me that much! In hindsight it’s a teeny tiny small insignificant part of my life – it affects me but I learn to cope and move on (through distracting myself and repositioning to face away from the indoor sun…!)

How do you feel about bright coloured objects, clothing and environments? Comment below with any stories and coping mechanisms!

And for more of my ramblings why not check out my podcasts? Links below!

anchor.fm/21andsensory

Apple Podcasts

Google Play Podcasts

The Mystery Blogger Award!

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Firstly I just want to say a big thank you to the lovely Bec for nominating me.  I would definitely recommend popping on over to her blog here. Her blog focuses on anxiety/mental health and she shares some amazing thoughts and ideas on it!

This award was started by Okoto Enigma on her blog, it’s an award “for amazing bloggers with ingenious posts.” Click the link to the blog for details!

Here are the rules of this award:

  • Name the creator of the award and link their blog.
  • Place the award logo or image within your blog post.
  • Thank the person who nominated you and link their blog in your post.
  • Tell your readers 3 things about yourself.
  • Answer your nominator’s questions.
  • Nominate 10-20 people.
  • Ask your nominees 5 original questions of your choice.
  • Share 5 links to your best blog posts.
  • Notify each of your nominees by commenting on their blog.

Okay here goes…3 things about me:

  1. I love apples and blueberries. If I could eat them all day everyday I would.
  2. I love wearing Converses. I wear them 24/7 and luckily can wear them to work too!
  3. I love succulent plants I think they are wonderful.

If you could have the perfect 3 course meal, what would it be?

Ooooh. Okay erm…I’d say dough balls and garlic butter for starter (I love bland meals!) Veggie Spaghetti Bolognese for main meal and then definitely some form of ice cream for pudding!

What’s your biggest fear?

Now this is a tricky one. At the moment my biggest fear is socialising with people and loud noises! I am more then happy with great heights, rollercoasters, bugs, etc!

What would you say is your best characteristic?

Hmm. I love helping people out and problem solving things for people so I would say hopefully my best characteristic is being helpful 🙂

If you could go anywhere in the world, where would you go and why?

I love anywhere by the sea so I’d either say maybe somewhere in Devon or Cornwall or even somewhere on the coast in Italy!

How are you today? (Strange question, but I want to know how you’re doing)

I think I’m okay today. I’m also excited because it’s Friday tomorrow which means the weekend and less work stress!

Okay here are my 10 nominations:

  1. highlysensitivelifeblog.wordpress.com
  2. sociallyawkwarrd.wordpress.com
  3. introvertedthinkingblog.wordpress.com/blog/
  4. sensitivegiraffe.wordpress.com
  5. potsitivityy.wordpress.com
  6. anonymouslyautistic.net
  7. myanxietydiariesblog.wordpress.com/about/
  8. sensoryseastar.wordpress.com
  9. inmyaspergersworld.wordpress.com
  10. mariner2mother.wordpress.com

And my 5 questions for the nominees to answer:

  1. What makes you smile?
  2. Where would you most like to go no holiday next?
  3. If you had one day completely alone how would you fill your time?
  4. If you could have any job besides the one you have right now, what would it be?
  5. If you could rewind 5 years and give yourself one piece of advice, what would it be?

Lastly my five favourite blog posts I have written:

  1. My Sensory System
  2. Loud Environments
  3. Change and why its difficult
  4. Memes to do with me
  5. DIY Sensory Box

Book Review: ‘Almost Adulting’

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So you may have heard my recent check in via the app Anchor (if you haven’t it’s a podcasting app for mobile – I’m going to be doing more recording of my sensory experiences and advice on it, scroll down my blog for the post I did!) anyway on my latest podcast I mentioned that I was going to be doing a book review soon on my blog and I mentioned how I think it might be helpful for others to read too!

So as you’ve probably seen by the heading (and the shiny image above) the book is called ‘Almost Adulting’ and it’s by a super lovely lady called Arden Rose. She is an Actress, Producer, Comedian, YouTuber and now a published author as well!

So Arden’s book centres around how to survive your future adulthood. This is written in the form of  journal-like-sections relating to different topics such as:

  • Self-Care (think eating well, washing regularly, making time for yourself to unwind and de-stress)
  • Making internet friends
  • Dating and Relationships
  • Clothing and how to dress on a budget
  • How to travel alone
  • Moving out and decorating your new space
  • Going on adventures and making the most of life

Arden documents her own struggle with OCD in the form of trichotillomania. Trich is defined as having a compulsive need to pick out or pull out your hair. At the age of 13 Arden realised that after pulling out all her eyelashes and eyebrows she was struggling with Trich and needed help. It became a habit for her in times of stress and she started as a freshman at high school with carefully drawn eyebrows and a cover-up coat of eyeliner. I won’t mention anymore because the book explains it much better than I ever could but the way she copes and distracts herself with other mechanisms definitely makes this book a worthwhile read.

I really do recommend it especially to teenagers as it does give you a heads up of things to come later on in life but even as a 23-year-old I found it useful (I don’t feel like I’m an adult yet but all the little adult things I find myself doing add up I guess.)

The book involves a real mix of essay-like chapters, great advice in the form of motivational lists and also features a lot of quirky illustrations. Arden writes in a very open and honest way which is enlightening but also put me at ease – it’s hard to do adult things all the time!

After reading this book I felt kind of more content because it occurred to me that adulthood creeps up on us all. And nobody knows what on earth to do in the start. It’s all about practice and challenging yourself to go out into the big wide world (and trying to keep up with all the bills, chores and socialising at the same time!).

Image credit: Carolyn Suzuki (whose awesome illustrations are on the cover!)

My zen garden experience ⛩

Today I visited a Japanese Zen Garden and thought I would document my experience there! It was a very quiet and calming place with lots of bamboo, wildflowers, wooden decking, carved benches and waterfalls.

There was a huge zen garden with tiny pebbles that could be raked into different patterns and a viewing deck to look out from. Large wind chimes kept blowing in the breeze and being shaken gently by visitors as they went past them. There was a smooth lake with huge Koi Carp fishes swimming just beneath the surface (although they seemed to like to hide under the bridge!)

Overall it was a super peaceful and calming experience and I could have quite happily have sat in the garden for a while longer if it hadn’t been raining a lot on and off here!

Where is your nearest calm spot to walk or sit in? Is it your own garden? A public play area, field, garden centre, allotment, beach, etc? Comment below with the place or space that brings you the most calm. Also feel free to comment below any questions you might have for my up and coming Sensory Q&A blog post – thanks!

Filmed using an iPhone 6S and edited using Instagram Stories: 📸​​ @21andsensory

Awesome Video Resources ✨

So I thought (seeing as I watch a lot of videos and tutorials on Youtube) it might be quite good to put together a list of helpful videos / YouTube channels to share on my blog…

Megan Rhiannon:  Megan is a 19 year old Autistic girl who makes fab Youtube videos and autism talks on her channel. Be sure to follow her for great tips and advice.

Routines can often leave us feeling bored and uninspired. Sonia is a brilliant YouTuber and artist who explores the importance of Escape as part of the creative process. Cheer up after a bad day or week with some of Sonia’s suggestions!

Lucy Moon is a fab YouTuber who openly discusses her battles with anxiety and mental health. She does a lot of chatty videos as well as vlogs and provides some great advice.

Becky (presenting the videos) is the founder of Sensory Spectacle. Sensory Spectacle share lots of information on Facebook, Twitter, Instagram, and also provide experiential learning environments which can be used in workshops, at events, etc. Becky also is invited to speak at conferences about sensory processing difficulties and the experiential work she is doing.

This video is part of a  ‘Homelife’ series is a short video each week sharing information about why we might see some of these characteristics in people with sensory processing difficulties.

Conan Grey is a young creative and Youtuber. In this video he discusses how to deal with mood swings, anxiety and being able to relax (as well as get on with your day) no matter how you are feeling.

Amelia and Grace Mandeville are two sisters who enjoy making Youtube videos about their daily lives, experiences and even film the odd comedy sketch too! This video discusses how to survive school and some top tips.

Charlotte is a lovely YouTuber and also a fashion promotion student and intern, occasional blogger and veggie enthusiast! This is a great video describing her first year at uni. She discusses a range of topics including loneliness, excessive working and anxiety.

ASMR / Relaxation videos: I can’t not mention them! If you search on Youtube for ASMR videos (and google their definition) they are some of the most relaxing videos out there!

So there you have it – 8 brilliant YouTube channels which I have found super helpful – let me know of anyone I should be following and that I can add to my list!

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