‘Some autistic feels’

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So I received this super awesome ‘lil zine in the post from the super lovely Megan Rhiannon’s Etsy shop this week! It’s intricate illustrations are beautiful and give a little insight into ‘Some autistic feels’. Have a little click through the slideshow of images above which give a little sneak peek of some of the pages!

Follow Megan here: Twitter | Instagram | YouTube | Etsy UK Shop

Some of my own autistic feels:

  • Living in big comfy baggy jumpers and skinny jeans all day everyday. I would dress in grey and black 24/7 if I could!
  • Hot drinks: specifically tea which is my go to hot drink…(with plain digestive biscuits!)
  • My weighted blanket: I use it every night without fail and during the day if I feel stressed out or anxious (it’s from Sensory Direct)
  • My phone: I listen to lots of podcasts and audiobooks to keep me distracted and to learn on the go about new things. (I might do a little blog post listing all the podcasts I love) I also love taking photos and videos of quirky things.
  • My wave projector: I use this most nights, it replicates sea waves moving and it’s super calming to watch 😍
  • My Sensory DIY Box: my go-to when I need to fidget or calm down sensory-wise. Currently loving my little fidget cube and tangle!

So there are some of my own autistic feels – let me know what little things you use everyday to self-soothe or distract yourself in the comments below…

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’.

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